Kylee

Kylee Has Passed

2011-03-22T08:02:00.004-05:00

This will be my last post. Kylee has passed away on Sunday morning at 5:43 am with Jason and I by her side. We had the best last two weeks with her right up to the very end. She was so happy and had alot to say. Jason and I were with her when she passed and it was so peaceful. I can not thank the staff at Children's Hospital enough or Melissa Borth for everything they have done for us during this time. Kylee actually passed on Melissa's birthday. Melissa has been a nurse who has come out to our house since Kylee was just a few days old. Her showing it tonight from 4-7 at Cline and Hanson and tomorrow from 10:00 to 11:00 with funeral at 11:00 at St Patrick's in New London.
Thank you to everyone for all your support during this difficult time.

Update

2011-03-14T16:19:00.002-05:00

Things are going well. Kylee is sleeping a lot more but when she is awake she is full of smiles and laughs. I asked someone how much longer they thought she had (I know I can't hold them to a date but just wanted an idea). They said if things keeping going they way they are they are thinking of middle of the week. She is my Irish girl...so Thursday is St Patrick's day. Again...I can not thank everyone for all your thoughts and prayers and I can not thank the staff at Children's Hospital of Wisconsin enough.

Resting Peacefully

2011-03-07T18:35:00.002-06:00

We made some tough decisions in the last week about Kylee but have decided that it is time to stop everything and let her go to heaven. She will be staying at the hospital until then. We had to explain to Collin that Kylee will be leaving us and that was so hard. We also made some hand molds of her and made a family collage of our hand prints. Kylee is so peaceful right now. I have never seen her more peaceful in my entire life. Nothing seems to be hard or difficult for her (she was not liking being moved or having her diaper changed and she was throwing up all the time). Please pray that we have the strength to get thru this difficult time and that Kylee goes peacefully. I can not thank the staff at Children's Hospital enough for everything they have done for us. They are amazing.

Neenah

2011-02-27T18:41:00.002-06:00

Sorry I haven't posted in a while. A lot has happened. We had made the decision on Thursday to take Kylee off of life supports and leave it up to Kylee as to what happened from there. Well as we know she is a fighter and still handing in there. She is having some lower oxygen stats and harder time breathing but other then that doing pretty good. We didn't expect her to do so well so we really didn't have much of a plan after that. If all goes well we are going to be heading to Neenah to Children's there to be closer to home. Collin came up today to see Kylee. We had talked to the child life specialist on how to explain death and dying to a six year old. She said it would be best for him to see her so that all of a sudden one day she is just gone and he never sees her again. So we decided today was a good day as she looked pretty good and had alot of tubes removed. He was happy to see her. Thanks everyone for all your prayers and support.

1 Step Forward...2 Steps Back

2011-02-16T19:28:00.003-06:00

Yesterday was a really bad day for Kylee and for all of us. Her sugar levels went over 600 (that is as high as the meter goes in the room) so she was started on insulin. They were not able to back her down off the vent at all. They wanted to take her to the operating room to place a PIC line (kind of like an IV line under the skin) however they felt that was to risky so they tried it bed side. I told the Dr the only thing I wanted was to be able to hold my daughter so he thought if he did it bed side if something happened I would be right there and could hold her. They ended up not being able to place the PIC line and just but in another IV line. They are having problems not having enough IV lines for everything she needs (medicine, blood products, fluids.....). We talk about possibly taking her off everything and how that whole process works (they let us do pictures with her if we would like, they do her foot and hand prints in stone and paper and then we decided how to go about removing things and keeping her comfortable). She had lots of family come to visit today and I took 24 hours off from phone calls and computer updates. The miss Kylee stepped up to the plate and once again showed us how strong she can be. Her sugars are now down to 200-300. They have started to bring her down on the oxygen part of her vent and her BPs and heart rate have been great. She is such a strong girl. She wanted to show me that it wasn't time to give up yet :) Thank is my girl. I love her so much.

No surgery

2011-02-14T18:58:00.002-06:00

Kylee ended up being scoped from the top down but they saw nothing that would actively bleeding. She had a breathing tube/vent placed on Friday as well as a chest tube to drain the fluid around her lungs and a NG tube placed to get all the yuckys out of her belly. She has been able to go down on the vent settings a little but usually ends back up. She is also getting some medicine to help get the fluid off her body. She is probably about twice the size she was before she went in. They really are not finding much wrong with her other then the flu (type A...yes she got a flu shot). No reason for the bleeding or how she could have gone from being so healthy on Monday (we had a full day of appts in Milwaukee and all said she looked great) to so sick and in ICU the next day. Sounds like we have a long road a head of us but we will take it one hour at a time. Thank you everyone for all you prayers.

Surgery

2011-02-11T10:41:00.002-06:00

Kylee has just continued to get worse. She started bleeding again. Is having a lot of issues with breathing and pain. They have decided to place a breathing tube to help her with her breathing. They are also taking her down to scope her and will have surgeons on standy in case they would need to do surgery. It is very risky to put her thru this right now however they feel she will not get better if they don't go in and fix whatever is going on. I will try to post after the procedure/surgery is done.

ICU

2011-02-08T19:55:00.001-06:00

ICU

Just wanted to post a quick note that Kylee is in ICU in Milwaukee. She was air lifter there this morning. I found her in her bed covered in blood and she had blooding coming out every end. They are not sure where the bleeding was coming from but it has stopped. They now think she is septic. I will try to keep everyone posted.

Make A Wish

2011-02-06T10:12:00.004-06:00

Make A Wish

So now that Kylee is done with her cancer treatment the oncology department made a recommendation for Kylee to receive a Make A Wish. The couple came out and saw us on Thursday night to talk about Kylee's wish. She is wishing for a 3 season room and a outdoor swing. How the process works is that they meet with you ask you different questions and then they take it back to the Make A Wish office and they decide what they are going to do. So we are very excited to find out what Kylee's wish will be. We did however say not trip, swimming pool or pet. Those are all things we would not enjoy or don't have the extra time for right now. So you will have to stay posted to see what Kylee's wish will be.

MRI

Kylee had a MRI done a few weeks ago because she was having really bad seizures. Her worse seizures yet. We had to give her the emergency seizure medicine which we have never had to give to her before. Nothing new showed up on the MRI which is good but the way the Dr (someone who has never seen us before) told me was not so good. He told me nothing changed on Kylee's MRI however we need to decide what we are going to do as Kylee's tumor will probably keep growing and will only make her seizures worse and we will just have to keep increasing her seizure medicine. He told us we should think about palliative care as well as DNR (do not resuscitate) for Kylee. This was a shocker to me. I then asked for all Kylee's MRI results as no one had told me anything about a tumor. So what this Dr was talking about is Kylee has a "growth" that formed from her having a brain bleed when she had high BP and low platelets. It has not gotten any bigger in the last few months but they can not know if it is cancerous unless they do a biopsy on it which since Kylee can not do any more treatment for cancer there is no point in finding out if it is cancerous. The fact that it has not grown is a good sign. We also found out she a a cyst on her penial gland which may explain why she has been so tired. The pineal gland controls your melatonin which deals with your sleep. So tomorrow we are heading to Milwaukee to see several Dr's and ask lots of questions and talk about the palliative care and the DNR. The first few weeks of thinking about all that made me very emotional and I cried alot but now I feel stronger about things and am ready to deal with it.

School

Kylee is back and school and enjoying it. I had a very difficult time letting her go back to school. I felt like she had been thru so much and I had come so close to loosing her that I didn't want to let her go. I just wanted to keep her home and close to me an not share her with anyone. I talked with the school and we decided it was in Kylee's best interest to go back and so I let her go and I must say it was one of my best decisions. Kylee loves school. Almost every day her note from school says how happy she was and how well she did. They send me home lots of pictures and she is smiling and laughing in all of them and playing with her friends. I love it and it makes me feel so much better about letting her go. I love seeing Kylee happy and that is all I can ask for.

**Sorry I haven't updated much lately....things have been a little busy with the kids in school, Collin wrestling and me back at work (for now...my work is getting rid of my department).

The Best Christmas Present

2010-12-06T20:54:00.002-06:00

The Best Christmas Present

We had Kylee's oncology appointment today and it was filled with many emotions. Kylee got her beads of courage today. It is a necklace with a bead for everything she has been thru (she gets one bead for radiation, losing her hair, every poke she has gotten, every transfusion and the list goes on). Her MRI results were normal. For the type of cancer Kylee has they usually do MRI's every 3 months for the next year to year and a half but because if Kylee's tumor was to return we wouldn't be able to do anything about it (she can't handle radiation or chemo) we have decided not to do the MRI every 3 months unless she is showing symptoms of it being back. Her IV was stopped today. Her needle was removed from her port (she always has a needle in her chest in case she needs labs or transfusion so they don't have to poke her every time). Her port will be removed in January and all of her counts have doubled which means her bone marrow is starting to work. They said her bone marrow will always be sensitive like when she gets sick and things so they will just have to keep an eye on it during those times. Since Kylee is now done with her treatment for cancer we got to ring the bell. A bunch of her nurses and Dr's and office people all stood around us while I read the plaque and then Kylee and I rang the bell....I cried like a baby. I was so full of emotions. So happy that she is doing great and we are done...sad that our odds were decreased from 85% to 50% and just in complete shock...it feels like the past six months has just been a bad dream and that someone just woke me up today and it is over. Kylee is going to be heading back to school this week and we have no scheduled trips to Milwaukee until after the Holidays. I am so excited......What a great early Birthday present for Kylee and a early Christmas present for Jason and I....who could ask for more.

MRI and IEP

2010-11-27T10:12:00.003-06:00

MRI and Update

Sorry it has been a while since I have posted. Life has been crazy as usual. We are still waiting for Kylee's bone marrow to kick in. Until it does we continue to have labs done twice a week and platelets and blood transfusions. One nice thing is that Oncology has decided we can have our transfusions done in Neenah (about 30 minutes from our home) instead of Milwaukee (about 2 hours from home). This safes us a lot of time and stress. We have had a few bad weeks with Kylee but things are better. She was in a lot of pain and needed medicine every 3-4 hours. She was also throwing up a lot and having lots of seizures and increase in her blood pressure. She had a CT scan and it came back as she was having some swelling in her brain as well as several "new spots" that were not on her previous CT scan. After they reviewed her last MRI with her CT scan they think she may be having some bleeding in her brain from her high BP's and low platelets so we are having to keep a close eye on her BP's and keep her platelets high. They have scheduled her for a new MRI to see what the new spots are and if she is having some bleeding. It was scheduled for last week but of course she got sick so we are now having it on December 2nd. She has been feeling better so we are assuming the swelling the brain has gone done. So now we just wait and see.

IEP

Kylee's IEP for school is on Monday. She hasn't been to school yet this year with everything that has been going on. The first part of school we were pretty much living in Milwaukee so it wasn't possible. Now that we are not able to go any further in treatment we are home more but now I am worried about cold and flu season and with her bone morrow not working she is more at risk for getting sick. So I am so undecided but she really needs therapy so I am going to have to ask about home bound services or see if we can do outpatient therapy if we don't send her back to school yet.

Thank you everyone for all your prayers and support. We could never thank everyone enough.

Our Treatment is Over

2010-11-01T07:16:00.002-05:00

Our Treatment is Over

We have been told for about a week now that Dr Jogel wanted to talk to us about Kylee's treatment and that we should prepare ourselves that her treatment is done. Well Kylee ended up in the hospital over the weekend due to mix up in labs (they told them she had MRSA in her blood culture when she didn't). So for two days she got IV antibiotics and one she was allergic too and had to keep getting it. Then the hard copy of the results saying there was a contamination in the culture and not MRSA. The MRSA result was from her ear culture which we knew. So while we were there for all that Dr Jogel had a talk with us. He tried so hard to put it gentle and I had to finally come out and say it for him so he knew I would be ok. Kylee has not yet been able to recover from the radiation. She still needs blood and platelets on a regular basis. So we were going to harvest her stem cells and then give her a small dose of chemo and see how she did. Well her counts have never been high enough to do the stem cell harvest. He said that if we don't do the full round of chemo (9 months) then it doesn't really increase her odds much. He said he just doesn't feel like it is worth it to do a little chemo and put her at such a great risk for the little bit it might help her. So our plan now is to do MRI's every 3 months for the next year and a half. That is the greatest risk of the tumor coming back. After that the risk is slim but it still could come back so we will do MRI's every 6 months until she is 4 years out after that we will just do them once a year. Part of us is sad that treatment is done and we drop her chances from 85% to 50% but the other part of us feels a great relief. We didn't want to put Kylee thru the chemo. We knew how hard it would be for her but yet as parts we felt we needed to do everything we could for Kylee. Now the decision was out of our hands. It will be hard going forward. We are going to have to try really hard not to worry about the what if's and let me tell you that is really hard. I am going to try really really hard not to but please forgive if I do. Part of me just wants to fall apart but the other part of me feels I have to be so strong for everyone else. I'm sure I will have my moment soon and I will pick myself and go forward just like I always do. It will be so hard every 3 months waiting for those results to come back but once they come back and they say things look good it will be a huge weight off my shoulders for 3 more months. On a more positive note hopefully things will start to get back to the way they use to be. Less Dr appointments and hospital stays. Kylee can get back to school and work hard in therapy. I can get back to work and hopefully just have more time together at home as a family. It will probably take a little while for her to get back on track from the radiation but I am looking forward to it.

Pictures of Benefit

2010-10-09T07:57:00.003-05:00

Pictures from Benefit

The princess arriving to the benefit. This made me cry. They announced the princess Kylee was there and everyone cleared a path for her to come thru. It was so amazing.

The pink castle is a card box. My good friend Matt made it for us. There is also a collage of pictures from our family photo session and then a large picture frame for people to sign. That really made a nice keepsake.

This is a blanket that my cousin Lucy made. She made us two. One was small and Kylee took that for our 6 weeks in Milwaukee for radiation. It had pictures of all of her family on it. This one is pictures of Kylee thru the years and then one with each of her nurses and then a nice little poem on it. I can not thank my parents and Lucy enough for this.

This was a princess cupcake tree made and donated by Lori Hilker. It was so cute.

This is Jason and I sharing our dance with Kylee. I will try to post the video but are having a few issues getting it. Hopefully soon :)

Benefit

2010-10-02T18:19:00.003-05:00

We had Kylee's Benefit last weekend and it was a huge success. The number of people that showed up to support us was unbelievable. Kylee has just gotten home from the hospital the night before and was not feeling her self so she only made a short appearance. When she got there they announced that Princess Kylee was there and they cleared a path for her to get to the front. It brought tears to my eyes. Then Jason and I shared a dance with Kylee. We played Collin Rayes she's with me as it explains exactly how we feel. The girls exceeded there goal for money raised and it couldn't have come at a better time as I had to take a 3 month leave of absence from work. All of Kylee's Dr's appointments and hospital stays was just not allowing me to work and I was getting very woren out trying to do so much. I have many pictures and a video and will try to post some day...when I have some time.
Kylee has had many hospital stays over the past month. She is still having problems keeping her levels up for her WBC, platelets and hemoglobin. She got MRSA in her ear as well as an infection in her blood. Along with high blood pressure issues. This past week she had both an upper and lower GI done and we are waiting for the results of that. She also had some blood work done to check to see if she has a chemo sensitivity before we start chemo and she also had an MRI to make sure the tumor hasn't grown back. We are awaiting the results of all that too. Hopefully next week. We have also gotten the ok to start feeding Kylee by her J tube again instead of the TPN (IV feed). We got the ok on Monday but still have not been able to feed her. We found out that Kylee has an intolerance to sucrose and had to change some of her medicines. We also found out that her milk had lots of sucrose in it so we had to switch to a different milk and the DME company sent us the wrong milk so we have to wait a few more days to get it. Next week we are seeing the transplant team for a possible stem cell harvest. I have been getting lots of paperwork in the mail from our insurance company about her "transplant" and it makes it sound like a much bigger deal then they explained it to me so it will be interesting to see how things go.
After learning how to do IV's, TPN's and IV antibiotics I have come to the conclusion that I think we need more nursing help. I have done 10 days for getting up at all hours of the night to do the antibiotics and after having a night were I unhooked her IV TPN instead of the antibiotic I decided I probably shouldn't be doing it half asleep. However finding good nurses is hard. We have several really good nurses and I would be lost without them. They have done so much for us during this difficult time. We also have one of our old nurses coming back...Now I am just looking for one more but all nurses that call I seem to hit a dead end. I have learned over the years to always go with your gut feeling when it comes to nurses and never settle. I am trusting my daughters life with the so never....never...settle.

September: Pediatric Cancer Awareness Month

2010-08-31T08:49:00.005-05:00

Pediatric Cancer Awareness Month..Our Journey With Cancer

September is pediatric cancer awareness month so I thought I would take this time to look back on our journey with cancer. I will always look back at June 14, 2010 as the day our lives were turned upside down. Kylee had been suffering for several weeks with what we thought were migraine headaches. As a mother I knew deep down something was wrong and so I called Dr's and nurses and made trips to the ER everyday for 3 weeks. Three weeks may not seem like a very long time but when you are watching your child suffer every day three weeks seems like a life time. On June 14th we took Kylee in for a CT scan. I left there feeling like everything was fine and that they would be calling me soon to say they found nothing and would begin treating Kylee for migraine headaches. Instead the Dr called me...wait the Dr...yes...I should have known right then and there something was really wrong. The Dr never calls. Then the words came out..Karen..we found something on Kylee's CT scan. We believe it is a tumor and we need to get you to Milwaukee to Children's Hospital as soon as possible. My heart dropped. She is not suppose to have a tumor...she has migraine headaches...NOT a tumor. A million thoughts and emotions went thru my head. How am I going to tell my husband...how am I going to tell my kids...why Kylee...what else can happen to this poor little girl. I wasn't sure if I should cry, be angry, be strong or to throw up. I got myself together and started packing and off to Milwaukee we headed. The next day was full of tests and the day seemed to last forever. Then cancer came into our lives with out an invitation. There was no going back. We now had huge hurdles to cross. We had to make decisions about our daughters life and our life that we never thought we would have to make. We had to decide what a quality of life was for Kylee and our family. We had to decide if we would have surgery to remove the tumor and do chemo and radiation or if we would do nothing and let cancer run its course. Those were the hardest days of my life. I don't know how I got thru them but I did and we are now on week 6 of radiation. It has been a raging river that we are crossing but we are taking one pebble at a time...a mountain to climb one step at a time...one day at a time...one second at a time....Kylee steps. Whatever it takes us to get thru this.

A gold ribbon has been the symbol of childhood cancer since 1970. Please post this gold ribbon on your facebook page or blog page to show your support during September for pediatric cancer.

Most people would not guess by looking at me that my middle child is amongst the one in 330 that will develop cancer by the age of 19. My oldest will start school this fall and1 in 46 kids in the United States will be diagnosed with cancer every school day. I may work as a claims adjuster for a medical insurance company but my house looks like a hospital and I play the roll of nurse on a daily basis.

Our journey with cancer has just begun but I am grateful that we are still a family of five and enjoy each day I have with Kylee. Our life is full of of daily trips to the hospital, radiation, chemo, bald head and lots of emotions but I still have my Kylee and that is all that matters.
This is and will be a very difficult journey however the love and support from our friends, family and strangers provides us with not only strength and financial support but the ability to feel happiness and enjoy laughter in one of our darkest moments. We could never thank everyone enough for everything you have done for us.

Week 5

2010-08-28T18:51:00.002-05:00

Week 5 has not been going to well. Kylee ended up in the hospital late on Tuesday night. Kylee was in Milwaukee with my mom and nurse Teresa. I got a call at 10:45 pm (I was sound asleep and couldn't figure out how to answer the phone) saying Kylee was at the ER and they needed my permission to treat her. So of course I couldn't dial my mom fast enough to find out what was wrong. She was running a temp of 101. They did labs and her WBC was very low and her ANC level and platelets were also low. As well as having a very irritated head from the radiation (it was very red and felt like it was on fire) and a bad diaper rash. So she went in patient had a transfusion and some shots for her WBC and a million blood test and found no reason for her fever. So on Saturday they told us we could leave but we had to stay at the Ronald McDonald House so we could bring her back if anything would change. They also said to try and keep her out of the ER as much as possible as it is full of germs. They said they would rather we call them and go to the oncology clinic or right to the HOT (cancer unit) then to go to the ER. We got a extended stay room at the McDonald House which is nicer. It has more room. Collin also came down for a few days and we took him to the Milwaukee Zoo. He really enjoyed it. School is starting next week for him. First day of Kindergarten for him. Kylee will be missing her first week of school but we are hoping she will be there for the next week. We are hoping to do dual services for her (both school and homebound) so if she is to sick to go to school she would still receive therapy at home. I have to talk with the school and we will have to have a IEP to discuss it.
Other then that nothing new to report. We were suppose to be done next week but because she was sick we will be adding on after Labor day to finish her radiation up. Then we will get a 4 week break before starting chemo. The talk is that they don't feel she will be able to handle chemo but Kylee always likes to surprise the medical field so I hope she proves everyone wrong.
A few weeks ago I joined a support group in Appleton for people with children with special needs. I really enjoyed my time with them. They meet the 2nd Monday of the month and they meet for drinks first (that is my kind of group). I knew 3 moms that were there but met many more and learned so much from them. It is nice to be around other people that know what your life it like. Everyone gets cancer because everyone knows someone who has had it but not everyone understand what life it like with a disabled child.

**You never know how strong you are until being strong is the only choice you have**

Week 3 and 4

2010-08-21T10:21:00.002-05:00

Wow...2 weeks have gone by and I have updated. That is because they have been a busy few weeks. For the most part Kylee is doing really well. She continues to have low levels for her WBC and her blood as well as dehydration issues so we have been getting blood transfusion and IV fluid. She has also lost her hair. This was really hard for me. I knew it was coming but no matter how much you prepare yourself for it you are never truly prepared. It was falling out in large clumps and was getting all over her face and mouth so we decided to go ahead and shave it. It was difficult to do but was for the best. On a positive note about that.....We have some really great friends....Ashley Murphy and her family made Kylee so adorable scarfs. They are all decked out with flowers and bows and are so cute. I have also had several people offer to make hats and headbands for her. Everyone has been so wonderful about helping me get thru Kylee loosing her hair and helping her look like the princess she is. Kylee also has been running a fever of 101 for a few days last week so they had to watch her closely with that as she has no immune system and a fever of 101 is grounds for hospitalization but she seems to have gotten over that all on her own. Her heart as has been checked out and things look good there. Nothing has changed in the last 6 months on that so that was very good news. I think that has basically been our last 2 weeks. Only 2 weeks left of the 6 weeks radiation. It is all a blur and will be happy when it is over :)
Thank you everyone for all the support you have given our family. I will try to post pictures soon. We have been taking lots of them during this process.

Week 2

2010-08-09T11:02:00.002-05:00

Week 2

Week 2 was a crazy week. Kylee's counts all started to drop as well as something called her ANS. If her ANS drops below 500-700 we have to be very careful of infection. Hers was 1036 on Monday but by Thursday it had dropped to 350. They decided to have me give her shots to increase her WBC and as of today that is helping. It was up to 600 range today. Her hemoglobin is also down so we had to be very careful that she wouldn't hurt herself or scratch herself as she could bleed very easily. It got so low that they decided to give her a blood transfusion so on Friday she went inpatient until Sunday. Last of all she became dehydrated and so mom got to learn how to give IV's. She ended up gaining 2.2 pounds overnight from the IV so we had to stop them. So overall a very crazy week. Happy it is over and hopefully week 3 goes better. I also got a call from my mom today that Kylee has started to loose her hair. So I am off to Hobby Lobby tonight to get some cute hats, scarves and wraps for her head. She also got a very pretty sash from our friend's the Lundt's that says very important princess. So that has been the overview of week 2 and we are now starting week 3. If we can get past Wednesday things should get a little better as the radiation will be reduced from head and spine to just head.

Thank you for all the prayers and support.

Picture

2010-07-29T13:43:00.003-05:00

Here is a picture of Kylee at the McDonald House today. She is just hanging out having fun. For the most part she is handling the chemo and radiation pretty well. Looks like she is exercising :)

Week One

2010-07-29T07:15:00.002-05:00

Week One

Week one is almost done. Kylee started both chemo and radiation on Monday. Monday didn't go too bad. She was pretty tired but that was about it. Tuesday they drew her labs and her sodium was done and she had gained a pound. They were thinking she was retaining water. So on Wednesday we had to have labs drawn again and if they were worse or if she gained anymore weight she would be put in patient. Wednesday labs looked better so we were good to go. What they think happened is that Kylee had really bad #2 diapers on Friday so I gave her pedialyte for 24 hours and slowly worked her up to her full feed. They are thinking the pedialyte has less sodium in it then her milk and that threw everything off. Tuesday she had a hard time with the anesthesia. She couldn't keep her oxygen level up so she ended up needing some oxygen. Other then that she is doing pretty well. She is only needing about 1/3 of the anesthesia then what is normal for some one of her size. She also had a skin reaction to the stickers they put over the markings for radiation. He said he has never had anyone allergic to them before I said Kylee always likes to be the first for everything. We also had a VERY difficult time trying to find a place to stay. The Ronald McDonald House was full so had to basically be homeless for a while. Then we ended up staying at a hotel the first night and a place called Kathy's House (wouldn't recommend it to anyone..would rather stay at a hotel for the price you pay) the next night and then finally got into the McDonald House. I can't thank our nurse Teresa enough for all her help down there the first few days. She did all the packing and unpacking for me while I was at the hospital with Kylee. Kylee is down there with my mom and our nurse Marsha for 2 days so I can come home and try to work. I also can not thank them enough for helping us. Our family is really pulling together for us. So we are 10% done. This is going to be a long road but trying to stay positive.

Kylee McGlin Benefit

Some of our friends and family are doing a benefit for Kylee. It is going to be on Saturday September 25th from 6:00 to 9:00 pm at Bean City Bar and Grill. It is going to be a family event with games, DJ and different raffles. They have been doing a wonderful job with setting everything up. I can not THANK them enough for everything they are doing for us. The benefit is going to be a princess theme. They are having T-shirts made up saying Kicking Cancer Princess Style and then the Kylee McGlin Benefit. So THANK YOU....Michelle, Kristi, Kelly and Jill for all your help with this along with everyone else who has donated raffle items so far. This really means a lot to us.

Family Pictures

2010-07-22T07:42:00.005-05:00

Here is a video that the lady that took our family pictures made for us. It is so nice. It was hard work get everyone to sit still to take pictures but well worth it. There is music to it so be sure to have your volume on and get your tissues ready.
Our wonderful friend Ashley had the idea of getting Kylee's picture taken with gold balloons as that is the color for childhoold cancer. On Sunday night as a family were are going to let the balloons go. This is going to be our send off of our journey with cancer.

http://video214.com/play/8h9z6MOIg7UVuWr4dVJPOQ/s/dark

Happy Girl

2010-07-20T06:43:00.003-05:00

Just had to post of a picture that our nurse sent us of our happy little girl. They were sitting outside soaking up some sun and having a girly day :)

Decision Made

2010-07-19T06:14:00.002-05:00

Decision Made

Well today we give our ok to go ahead with radiation and chemo and the process should start next Monday. Six weeks of daily radiation Monday thru Friday. It will be a long process. Each day we will have to get up early and go to day surgery and hour before radiation. They then will put Kylee to sleep transfer her over to the hospital that does the radiation (Children's Hospital in Milwaukee does not do it but a hospital connected to Children's does). The radiation will take about 20 minutes and then she will go to recovery and once she eats she can go back to the Ronald McDonald House (we are 2 hours from Milwaukee). Then we will start the process all over again the next day. We are hoping to break up the 6 weeks between me and my parents and nurses as for one I don't have 6 weeks to take off of work until the first of the year and I have already used much of my FMLA and we have a long road ahead of us before the first of the year. Plus it will get to me a long road being down there. It is so nice to have such wonderful parents, nurses and a husband who will stay home and work and take care of the 2 boys. We have to go down some time this week to get her "prepared" for the radiation. My mind has not even moved on to chemo but I guess that is where the Dr's are more concerned about Kylee. She has so many other health issues that they are not sure how she will handle the chemo. As always one step at a time....lets get thru the radiation and then move on to chemo.

New Equipment

Before Kylee got sick we had ordered her some new equipment. Well it is in and she is finally well enough to be using it and I love them. We got her a new chair called a Nandu. It is so nice. It helps her to work on her upper body as it only supports her lower back. You can also adjust the height of it so she can sit at a little table. Then we got a tumbleform wedge that you strap her into and she has to work on staying on her tummy and pushing up with her arms. Last of all our good friend Ashley Murphy sent us a sitting device called a sit u up and it is shaped like a "c" and also helps her work on her sitting. Could you tell that sitting was a goal for the age of 4? I guess I can cut her a slack with everything that has been going on :)

Pictures

We got our family pictures taken yesterday. Can you believe that we haven't had a family picture taken in 4 years? Yes...that means no family picture with Kylee or Keegan and after yesterday I remember why that is. It was hard work. Keegan just wanted to run. If the lady said sit he would stand if she said stand he would sit. Plus it was so hot. I am hoping for at least one good family picture and 1 good picture of Kylee and then I told Jason we are not doing it again until Collin gets married.

Happy Girl

To end on a good note. Princess Kylee has been such a happy girl. She just smiles and laughs and we are really enjoying every minute with her. Everytime I see her smile it makes me want to cry because that is all I want....I just want her to be happy and enjoying her life.

Big Decision

2010-07-12T17:52:00.002-05:00

Big Decision

We have one of the biggest decisions to make and that is how to go about treating Kylee's cancer. Typical treatment is radiation to the entire head and spine. With Kylee being so delayed we are a little worried about doing that and so were several of the Dr's. Then we saw a psychologist who saw Kylee for about 10 minutes never once awake during those 10 minutes and asked me about 20 questions if I was lucky. Based on that he decided that Kylee was done developing and that we should go ahead with the full head and spine radiation. I said I completely disagree. Do you know anything about 1P36. Do you know that many of these children learn to do lots of things other kids do but at a much slower rate. So you want to tell me at the age of 3 she is done. REALLY are you SERIOUS. Well needless to say he doesn't want to see us again. Can't imagine why...maybe because I would show up with lots of data to show that my daughter isn't done. Show him how much progress she made in school in just a few months with a tumor growing in her head. So with that being said Jason and I just don't feel right about doing the full head and spine radiation. We feel like she has lots of progression in her and just don't want to take that chance. Unless they would give me some guarantee on Wednesday I don't think they will be changing our minds.

Appointments

Wednesday we head back down to see the genetic dr and to meet with oncology one more time. After that I think we have to make our decision and start. They said they would like to start the process at least 1 month from the surgery date and that will be on Monday. So not much time.

Thank you

We continue to receive so much support both emotional, financially and physically. We could never be able to thank everyone enough for everything you have done for us. This is a very difficult time for our family but we will get thru it one step at a time.

Kylee is going to kick cancer princess style.....she is going to kick cancers butt and she is going to look good doing it :)

We Are Home

2010-07-01T08:51:00.003-05:00

We are home from the hospital. Kylee came home on Tuesday. What a couple of weeks it has been. As most of you already know Kylee had been suffering with headaches and throwing up issues for weeks. We had thought she had something called CVS until she was still throwing up and having headaches. We had a CT scan down in Neenah a few weeks ago and the Dr called me and said they had found something. I should of known when the Dr called that it was not good. They said she had a tumor along with some fluid build up and that we had to get to Milwaukee as soon as possible. When we got down there they couldn't get over how well she was doing considering the size of the tumor and where it was located and the fluid build up. The next day they did a MRI and said yes she has a tumor we think it is Medulloblastoma as the tumor was not there on her last MRI 8 months ago so it is considered to be a fast growing tumor. He gave us all our option (biopsy or removing or doing nothing). It was a difficult decision but we decided to have it removed. So a few days later she went thru a 6 hour brain surgery to have the tumor removed. That was the longest day of my life. They would call me every 2 hours to update me on how she was doing. They had a hard time getting all the lines in her (imagine that...Kylee...a hard poke), she lost blood so she had to have a blood transfusion and they had a few issues with her blood pressure. Other then that she did very well. The Dr came out and said there was a perfect barrier between Kylee's brainstem and the tumor so she was able to get all of the tumor and not damage the brain stem (that was a relieve) however it does appear to be Medulloblastoma. So we got good and bad news. After we went in to see Kylee she looked great. She still had all her hair but the little spot that they had to go in and remove the tumor and no bandages and just a little facial swelling. We were so happy at how great she looked. Well over the next 24 hours Kylee did not wake up. They did another CT scan and seen she had lots of fluid build up and she would need an external shunt place. They didn't have any OR rooms open so they did it right in ICU in her room. As soon as they place it she woke up and the next day we were out of ICU. We now have the task ahead of us as to what to do about treating the cancer. They figure they got all or most of the tumor but if we don't do chemo and radiation it will grow back. Due to Kylee having special needs if she were to have radiation to her entire head and spine she may loose most or all of her skills and would probably not gain them back. We have decided that is not an option for us. So our other options are to do just radiation to the site and chemo or just chemo. This lowers her odds from 80% to 50-60% to become cancer free. We go down to Milwaukee next week to meet with a team of Dr's to talk more about our options and what we would like to do.

Thank You

We would like to say THANK YOU to everyone for all the kind words, prayers, physical and financial support. The out pouring of support has been so wonderful and we would never be able to thank everyone enough for everything every one has done for us. I would like to say a special thank you to Jill (Lowney) Maus for setting up a savings account for Kylee at Community First for donations and for letting me know about the Community Tree (a non-for profit organization that helps families). I can not thank you enough for that.

Brain Tumor

2010-06-24T08:39:00.002-05:00

Brain Tumor

As many of you know Kylee was diagnosed with a brain tumor last week Monday and had the tumor taken out this past Monday. They are pretty positive that it is cancer and we are waiting to see the doctor to decide what our next steps will be. This is where all Kylee's headaches and throwing up was coming from. The hospital we are staying at does not allow us to update blog pages as they have what is called a caring bridge site and they want you to use that instead of the blog. So sorry it took me so long to update and I don't have much time to write more. Please feel free to e-mail me or add me as a friend on facebook.

Thanks.

Two more Diagnosis

2010-06-02T12:25:00.002-05:00

CVS and Hip Dysplasia

It has been a while since I have posted but things have been crazy in our household. Kylee has been sick for the last couple of weeks. It started out with what we thought were migraine headaches. She would just cry and cry and act like the lights hurt her eyes. So we were calling around to Dr's trying to get her treated for the migraines. It took her 3 days but she seemed better. Then the next week she started all over again however this time she also had vomiting issues with it. So we treated her again as a migraine headache. She seemed better for a day and then it seemed to start all over again. We had her checked out and did x-rays and they couldn't find anything to cause her vomiting. Today we talked with the GI Dr and he has diagnosed her with CVS (cyclic vomiting syndrome). So basically they will give her a medicine to treat the vomiting (same thing they give chemo patients) and then they will give her a medicine to try to keep her from having another "cycle". Now with all that being said...I think she has had this for over a year. In Feb of this year our friend Beau was diagnosed with it. His mom and I were talking and said how much it sounded like Kylee. Then she seemed to get better. That is how it works. They will have issues with throwing up and then they seem better. So just happy to have a diagnosis and a treatment plan.

While we had the testing done for her stomach we also found out that Kylee has hip dysplasia and it is getting worse. Well first off I never knew she had it...as far as I knew all hip x-rays she had were normal. She hasn't had one in a year so it developed some time in there. So we are off to add 2 more doctors to our list for that along with some shoulder clicking. We will be adding a rehab doctor and a orthopedic.

Computer Issues

We have been without a home computer for some time (part of my reasoning for not post) as ours decided to die. THANK YOU to my wonderful friend Ashley (Beau's mom) who is donating me one to I can stay connected with everyone. I have been lost with out it.

School

Well Kylee finished up school. She will be off for a few weeks and then start summer school. They had such a high response for summer school in her class that she is now limited to only 2 days a week. Which will be ok. Then on the days she doesn't have school we are taking her to the local hospital for therapy. She has come a long way with her therapy at school. She is holding her upper body so much better. Sitting alone much better (I am hoping for a complete independent sitter by her 4th b-day). Playing and reaching for toys. Tracking toys with her eyes and just liking being around people more. We are also looking at doing story time at the library with her so that it would be something similar to school. We are trying to keep her in a routine. She likes routine.

Vacation

Next week we are on vacation. As much as this breaks my heart we have decided to leave Kylee at home with our nurses during our waterpark stay. Kylee can only handle it at the waterpark for a short time and then she wants to be back in the room. With the 2 boys being so active and each interested in different things it is hard for just one person to take both the boys. It will be hard but good for everyone. Kylee will be much happier at home then anywhere else and we have such wonderful nurses that I know she will be in good hands and well taken care of (spoiled).

Happy Summer Everyone!!!

Surgery

2010-05-06T15:01:00.003-05:00

Surgery

Kylee's surgery went well. She got her 3rd set of tubes placed and her adenoids removed. He said her tonsils were a little large but not bad enough that they needed to come out. Her surgery ended up running late and then she had some problems with her oxygen level dropping after she came out of surgery so it was a long night. She was fine while she was awake. So they couldn't decide if they wanted to send us home or not. We ended up getting into the McDonald House so they waited for her to fall asleep and then said we could take her to the McDonald House hook her up to our machines that we brought for her heart rate and oxygen and then if she did fine we could come home and if not bring her back to the hospital. So they discharged us at 10:30 lastnight we went to the McDonald House. She had a few drops in her oxygen but not much so we just got home. She is looking a little white and not herself but I am sure in a few days she will bounce back. Thank you for all the prayers and well wishes.

GI and School

2010-05-01T19:21:00.002-05:00

GI Appointment

We had Kylee's GI appointment on Friday and all went well. In fact it was the best GI appointment we ever had. For once we didn't complain about #2 diapers and throwing up. We really think the medicine we give her every month has taken care of that. So we are now going to try to bring her down on it as she does have lots of #2 diapers when she is on it. We also talked about starting to feed her in her stomach and he was ok with that. He said whatever mom wants to do (he is a smart man). So we are going to come up with a plan to feed her quick feeds in her stomach during the day and then a slow drip into her intestine at night. Hope it works. He is also bringing her down on her calories again. She has gained another pound (30.7 pounds now) in just a few weeks. So she is going down to 27 ounces a day and the rest is water and the last thing on this list is she needs a bigger feeding tube as she has outgrown the size we have been using.

School

I went and sat in on school for Kylee on Monday and it was great. She does so well. On Mondays she has a very busy day...gym...occupational therapy...physical therapy and if time allows speech. They do so many fun things with her during therapy. They have a little scooter they rider her around on in the hallway and she has several older friends. When they see Kylee in the hallway on her scooter they come out to say hi. She also has a new "boyfriend" at school. Her last one had to move to the afternoon class and now she has a new one. I got a picture sent home on Friday of the two of them hugging. It was the cutest picture every. I guess he is always worried about where Kylee is and like to be by her. She also has another friend named Zoe. They ride the bus together and often have vision therapy together. Kylee has really grown to like her and will smile when I say her name. I just can't believe how far she has come at school. We have decided to send her to summer school and she will receive therapy at our local hospital as that is where her therapist at school are from. We are trying to keep things on a regular schedule as so she doesn't fall out of the routine.

Surgery

Kylee is having her surgery on Wednesday to have new tubes put in her ears (her 3rd pair) and her adenoids removed. We have called to the Ronald McDonald house to get on the list for Tuesday night so we won't have to leave so early on Wednesday morning. Please keep us in your thoughts and prayers on Wednesday. The surgery is minor but as we have learned in the last couple of weeks from another 1P36 family is that even when you take a child in for something minor it can have a horrible outcome. They had taken there daughter in to have her feeding tube replaced and ended up having to have stomach surgery, ventilator and helicopter ride. Scary.

The Giggles

Kylee had the giggles on Friday and it was so darn cute. When we were going to Green Bay to her GI appointment she would laugh every time we went over a bump. Then when we were about half way there she just started laughing about every little thing and she was laughing so hard she started to snort. It was so darn funny. Then she started to laugh Friday night every time I would say the word serious. She is a goofy girl but I love it. Days like that are priceless.

No More Blue Spells

2010-04-23T12:53:00.002-05:00

Blue Spells

We took Kylee to the cardiologist on Wednesday and was told her heart look wonderful. She said things look better and better every time we come in. She said we have to come back in 6 months for a follow up because she is on the hypertension medicine but we didn't need to have another echo done for a whole year. That was good news but it didn't explain why she was having the blue spells. So as we have found out from some other parents on the 1P36 support group it is just something that happens. As long as she doesn't have difficulty breathing and her oxygen level is normal we are not to worry about it. They figure it is either poor circulation in which they told us to just keep more clothes on her and rub her arms and legs or it could have been that she was in a dysautonomia crisis. I am leaning towards the dysautonomia crisis. Kylee has not been formally diagnosed with it but just matches the symptoms to a tee. She has been in this
"funk" during these blue spells. Just unhappy and crying and then all of a sudden she was out of it and was the happiest little girl you have ever seen and let me tell you I am loving it. So heart looks great...no more blue spells and my happy girl is back. I'll take it.

After School Moments

My favorite part of the day is when Kylee comes home from school. This is always mom and Kylee time. I read her book on what she did in school that day and then we sit on the sofa and Kylee fills me in on everything. She sits there and smiles from ear to ear and just babbles away about her day. However you can always tell when it is therapy day because those days she is not so happy. She is doing really well with school and is starting to reach out for objects and play with toys. She got her first report card and she did pretty good. She was a E (meaning she can do it most of the time but not consistently) on everything except for she met her goal of being able to hold onto a toy and transfer to the other hand 3/4 tries. I am going to go sit in on therapy on Monday just to see what they are all doing with her and see what we can carry over at home and/or if there are anythings we can improve on at school. Should be a fun day...plus then I get to see all of Kylee's friends and for a few moments feel like I am a part of her school life.

Next Friday we go see GI. Knock on wood things have been going good in that area. I am going to see if I can get orders to start feeding her back in her stomach so that our nurses can do it also. She has been doing great with it. Her #2 diapers have also gotten much better for most of the month. When she is on the medicine for the 7 days it is horrible. One day last week we had 10 diapers and they go everywhere. Once she is done with the 10 days she goes once a day. With that being said I think she did have an overgrowth of bacteria in her small intestine so I think she will be staying on the medicine for a while. What they usually do is put you on it for 6 months then bring you off until the symptoms come back and then put you on for another 6 months. As long as the c-diff stays away I will be happy.

Surgery

2010-04-12T10:48:00.002-05:00

Surgery

Kylee is scheduled to have her adenoids taken out and new tubes in her ears on May 5th. It is funny how Dr's don't know there schedule. He told us he was going to try to get her in last Wednesday and if not last Wednesday then this Wednesday. When the lady called he had no openings until May 5th. So that is the big day. I am hoping this will help with getting rid of some of the ear infections and maybe help her eat orally a little better also if she is not so clogged up with junk.

Eating

Eating has not been going so well lately. Ever since we took her to the dentist to get her teeth cleaned she will not let you near her mouth. The school speech therapist has decided to start all over from scratch with her. Which means no orally eating but just getting her to be less defensive about have thing around her mouth. This is no unusual for Kylee. Every time she gets sick or something "upsets her life" she regresses in eating. We have however started to fee her thru her feeding tube into her stomach instead of her J tube and she is doing pretty good with it. She can take about 6 ounces right now which gives her an extra 3.5 hours off her J tube feed which is nice. So we are just going to keep working on trying to increase that number so she can spend less time attached to a tube.

Turning Blue

We have been having some issues with Kylee turning blue when she sleeps. The first time it happened in a very long time was on Easter Sunday but she has had it happen several times since then. I can't really figure out what it is. Her oxygen level and heart rate are normal so I wouldn't think it is sleep apnea. She gets lots of fluids so I would think it was degradation and the last time we saw the cardiologist she said her heart looked great. So can't figure it so I had to call in some help.....have a call into my Gurdian angel Deb at the special needs clinic. I thinking it has to do with circulation but not 100% sure.

Night Away

Friday night Jason and I are taking a well needed night away. We are going out for supper and drinks and then spending the night at a hotel in Appleton. Not to far from home but just enough for a little get away. We are so thankful to have such wonderful nurses that are helping us out so we can get this time away and such wonderful family that are helping with the two boys. We would be lost without them. Thank you.

ENT Appointment

2010-04-05T20:22:00.003-05:00

We took Kylee to the ENT today and she is getting a new tubes in her ears and getting her adenoids taken out. We don't have a scheduled date yet but he is figuring this Wednesday or next Wednesday. He said taking her adenoids out might help some with the ear infections and some of her snorkle noises her nose makes but he said she has a deviated septum and that is where the noise it coming from. I never knew she had a deviated septum. Learn something new every time. So hopefully this will help her feel better and get her back on track.

Purple Day

2010-04-02T10:03:00.004-05:00

Purple Day

Last week Friday was Epilepsy awareness day (wear purple day) so Kylee dressed in purple for school and the rest of us wore purple ribbons. Including big brother Collin. We also sent ribbons to school and all of Kylee's teachers and aide wore them. I also had several co-workers, friends, family and my sister and her fellow co-workers. It was so nice to see how many people wore purple to honor Kylee and others with epilepsy.

Crazy week

Kylee has been very crabby for several weeks. We first thought it was because she was being brought down off some of her seizure medicine. Then we thought it was from her hypothyroidism and being started on a new medicine. Well we decided on Monday to take her to the doctor and it turned out she has a horrible ear infection. It was so swollen they couldn't even see inside it. She has tubes and they are suppose to drain but because it was so swollen it couldn't drain. So we ended up having to drive her back and forth to the Dr's everyday for shots and to have her ear rechecked. It has been no fun. I think we really need to get back to the ENT and get it all checked out. Also my dad (Grandpa Eddie) has been sick and in the hospital however he is coming home today and we are very excited. As usual never a dull moment in the McGlin house.

Hope everyone has a nice Easter :)

Another Family

Tomorrow we are meeting with another family from WI with 1P36. They have a little girl named Chloe and live in Madison. We have been talking for many months and have always wanted to meet up but have never had the chance. Tomorrow they are going to be in the area so we are meeting in Appleton. I can't wait to finally meet them in person after talking with them for so long. I will be taking lots of pictures to post. It is going to be so exciting.

Happy St Patrick's Day

2010-03-17T08:54:00.005-05:00

Happy St Patrick's Day from the McGlin's

Always has to have the finger in the mouth for pictures. She is so hard to get a good picture on. I think I took 5 and decided this was the best. She had enough. She was all in green and has her toe and finger nails painted green. She is a true Irish girl.

Hypothyroidism

Last week an>took Kylee to Milwaukee and got the diagnosis of hypothyroidism. Just another diagnosis and medicine to add to the list. At least this one isn't a major one.Hypothyrodism is very common in children with 1P35. Kylee has gained 10 pounds in less then a year and has gained 4 in the last 3 months. We are thinking it may have to do with the hypothyroidism and are hoping that the weight gain slows down.

Another Wisconsin Family

We have been told by our nurse coordinator that there is another family in WI with 1P36. I think if I am counting correctly that will be 4 families including us. There is one in Madison (yes...Ms Chloe that is you) and then 2 families down by Milwaukee. There is suppose to be another family some where around us that Chloe's family was told about but I don't think any contact has been made with them yet. So with several families in the area Chloe's mom is putting together a little weekend this summer for all of us to meet. Every year there is a 1P36 conference but this year it is in Utah and we won't be traveling to it. Next year it is suppose to be in Minnesota and I am for sure going to be there. I can't wait to make contact with this new family from WI and let them know that there are some great resources out there for them. I would be lost with out my 1P36 family.

Pneumonia

2010-03-07T09:56:00.002-06:00

Sorry it has been a while. Kylee was sick with RSV and was in the hospital for a little while with that. We brought her home and took her in for a check up a few days later and they said that she was doing great and that she had recovered from RSV. I asked if they thought she could still get pneumonia and she said no that she was past that stage but if for some reason she developed a fever to take her in ASAP. So the next day Kylee was very tired and slept most of the day. At 7:00 pm I decided to start to get her ready for bed and when I felt her she was burning up. I took her temp and when it got to 105 I stopped and said get ready we are taking her to the ER. Her temp was threw the rough and her heart rate was 200 (normally it is in the low hundreds). Then she started throw up some yucky colored stuff. We took her to our local ER because we were afraid to drive to far with her. We got her there and they told us they couldn't find anything wrong with her but her WBC was high so she must have an ear infection. I told him I was not leaving there unless he talked to Children's Hospital. So he called there and told them he thought she had an ear infection. They said to giver her a shot of antibiotic and to see our Dr the next day. Well we couldn't get in to see our Dr the next day until the afternoon and Kylee just seemed to be going down hill. I called and talked to my angel in Milwaukee (our nurse coordinator with the special needs clinic) and she said she didn't feel she could wait that long and to call our regular Dr back and see if we could get in sooner. Well she couldn't and they suggested to take her to the ER. So off we went again. I hated thinking I would have to take her to the ER again...we had been there so much and I felt like no one would listen to me. This time we took her to Neenah which is about 30-45 minutes from us but are better equipped to handle Kylee and they listen to me. They did a chest x-ray and said she had pneumonia. They then looked at the x-ray's from the night before and said she had pneumonia then also. They said that it was hard to see on the 1st one because it was behind her heart but that it was there. Her WBC had also tripled from the night before. So off to the hospital we went again however she only had to stay for 1 night. They said they felt that by us getting her to the ER so quickly when the symptoms started she was able to get the antibiotic right away and that is probably what helped her. Then they also said they felt we went thru the wore part of the pneumonia at home. Well Kylee bounced back quickly and even went back to school on Monday. She is doing wonderful. You wouldn't even know that she had been so sick. So it was a long couple of weeks but just reminded me that I am Kylee's mom and I know when something is wrong and not to stop until I get help for her.
This week we head back to Milwaukee on Tuesday for a endocrinologist appointment. It should be interesting to see what they have to say and hopefully she don't pick anything up while she is there as last time we had her there that is when she started with the RSV.

We Are Home

2010-02-20T13:46:00.002-06:00

We are home from the hospital. Just got home a little while ago. Kylee is still on oxygen but is doing ok. She really needs the oxygen when she is sleeping. I am hoping it doesn't develop into pneumonia as she just doesn't seem strong enough to cough all that junk up. The nurse said there was 5 kids up there and 4 of them had RSV so it is going around really bad. She said older kids usually just get diagnosed with bronchitis. Kylee use to get some really expensive shots to prevent RSV but she is now to old for them. Our insurance company is probably also kicking themselves in the butt. Since Kylee started school we have had to leave our portable oxygen tank at school because she can't transport it on the bus. We asked our insurance company for a 2nd one in case she would get sick and we would have to take her some where. They decided to deny it. This item cost a couple hundred dollars. Now that they didn't pay that they will be paying for a 2nd ER visit and an ambulance ride. If we would of had it our Special Needs Dr would of just called the hospital and we would of taken her there ourselves and had her go directly inpatient. Sucks to be them...maybe they should listen to this mommy. So I called yesterday to let them know and they are going to re-evaluate it.
Kylee has not been on oxygen 24/7 since she was 1. It seems weird having her back on it and I have to get back into the swing of all the extra stuff that goes along with it.
We would like to thank everyone for all there prayers, well wishes and help. We would like to say a special THANK YOU to our neighbors Steve and Jill. We will be in our house 2 years in June and Steve and Jill welcomed us with open arms. They help so much with our kids. We are truly grateful to them.

RSV

2010-02-18T11:37:00.002-06:00

Just want to post a quick note that Kylee is in the hospital in Neenah with RSV. She is on oxygen and neb treatments but is doing pretty good. Hoping it will be a short stay.

Cookie Monster

2010-02-17T11:02:00.002-06:00

Cookie Monster

Last Friday was Kylee's Valentine's Day party at school. I got a phone call and when I answered it they said hi Karen this is Ms. Heather (Kylee's teacher) and my heart sank. I thought something must of happened at school and she must of heard it in my voice. She says no no this is something good. She said I just wanted to call and let you know that Kylee is eating a cookie and is really liking it. We video taped it and would like to send it to you. I could of cried. She has never eaten anything like that before. She said is was nice and warm and fresh from the oven so it was really soft. They tried to e-mail me the video but the file was to large. Then on Monday when we were in Milwaukee we were eating lunch and we were feeling bad eating in front of her and so I gave her some of my cheddar broccoli soup to try and she liked it and didn't fight me on every bite. I am so proud at how well she is doing eating.

Appointments

Well Monday was a fun filled day of appointments. We started out at radiology at noon for a new GJ tube (to Ashley's mom...we had one of you button covers on again and they loved it). Then at 1:00 we headed to her first dental appointment. Lets just say she did not like it at all and screamed thru most of it but the staff did a great job with her. She had lots of build up on her teeth but they said that is very common with kids who are tube fed. They cleaned them up really nice and then gave me a few tips on how to brush her teeth. They said some parents use a rubber door stop to stick in there mouth to keep it open so they can get in good and brush. They also said to use a regular tooth brush and toothpaste (we were using a baby tooth brush and toothpaste). Then we headed to neurology. That was a never ending appointment. Our appointment was at 2:30 and we did not get out until 5:30 (we were just seeing the Dr no tests or EEG's). They think Kylee is doing great. She is still having 3-4 seizures a day but for the type of seizures she has that is really good control. Plus her seizures only last 1-3 seconds. She wants to get 100% seizure control but she thinks we are on the right path. So they have decided to take her off 2 of her seizures meds in hope that the 2 they leave her on will work better. So we are slowly taking her off of them and just need to watch how she does. So we left there at 5:30 and it was snowing and accidents everywhere. Made for an interesting ride home but we made it safely and over all they were good visits.

Thank You (Beau's Family)

On Monday I was able to meet a mom and her little boy for the first time. I met Ashley on craigslist several months ago (the weirdest way). It was like it was meant for us to meet. Her little boy was born the day before Kylee(and a year later) and him and Kylee weighed the same and were the same height. I have Beau's caringbridge page on the side of Kylee's blog page. Ever since we have met we have been talking thru e-mail and we have helped each other out in many ways. Kylee and Beau do not have the same diagnosis but they are similar in many ways. So we finally met in person on Monday and it was so nice to finally meet. She also had a gift for Kylee and she loves them. One is a dog that smells like lavender and she loves it. She grabs at it all the time. There was also a toy in there that vibrates which she loves those kinds of toys and then there is a tube with small beads in it and it catches her eye every time we play with it and she just sits and watches (little brother Keegan also likes that toy). So I just want to say THANK YOU to Ashley and her family for the wonderful gift and all your support.

Diet and Thyroid

2010-02-11T09:59:00.003-06:00

Diet/GI and Thyroid

Well Kylee's thyroid test has come back and of course she follows no pattern for either hyper or hypo. Her TSH is high and her T3 is on the lower end of normal low and her T4 is high. So the decision has been made that we need to see yet another Dr. We will be adding and endocrinologist to our list. In the mean time GI has decided to cut her calories. So she is going from 32 oz of formula to 29 oz and then the rest she will get as water or as "gold" (pedialyte...that stuff can add up when you use it daily). Kylee loves her "gold". If she is a little sleepy if you give her and oz or two of that you would think you gave her a can of Mountain Dew.
We are also done with the first round of medicine and it seems to have slowed the #2 diapers down some so we are hoping that will do the trick.

Sitting

Kylee is doing so well with her sitting. She can now sit all by herself for about 5 minutes. After that she wants to throw herself back but if you just poke her with one finger she will remember to sit back up. We are so proud of her. I wouldn't call her an official sitter yet as I don't feel comfortable not being right there when she is sitting but I think we are on our way.

Monday

Monday will be a big day for us. We are heading to Milwaukee for a fun packed day. We start off with getting a new GJ tube place. Then we are heading over for our first dentist appointment. Which should be interesting as she won't let you in her mouth for very long but I am hoping they will have some tips for brushing her teeth. Then we go to neurologist. Our neurologist is such a busy lady that she books out years in advance so we have not seen her since Kylee got her dx last January. I think our next appointment with her is scheduled for 2011. We do see her NP in between those visits and do lots of calls.

One Year

I can't help but think back to a year ago and cry. Last year at this time I was holding my baby girl in my arms and telling her how much I loved her and that if she was tired of fighting that I understood. It took me a whole 2 years to come to terms that I could loose my little girl and that it would be ok. It would be hard but it would be ok...she would be in no pain and wouldn't have to fight so hard for every little thing. Last year at this time she was in the hospital on high levels of oxygen and her heart was not functioning probably. She was at the Neenah hospital and they decided to send her to Milwaukee to ICU. The Dr asked me if I had a DNR on her and I lost it. I never had anyone ask me that before and that made me realize how bad she was. Let me tell you that is a hard decision to make and a year later I still have not been able to make that decision. Kylee is a fighter and has come a long way since this time last year. I am so proud of her and grateful for each day I have with her.

Theme Week and Bus

2010-01-29T19:20:00.006-06:00

School Bus

This was Kylee's first week riding the bus. She LOVED it. She has blown me away with how well she is enjoying everything. On Monday I had to go into work so I put Kylee on the bus and was crying my eyes out (I know...It wasn't the first day of school but another big step for our little girl). I got in my car and the song on the radio is the song on her blog page. So of course I cried some more. Then I got a text from Kylee's nurse (thank goodness) saying how much enjoyed the bus ride and that she was looking out the window on each side of the bus. That made me feel so much better.

This is Kylee getting loaded into the school bus.

This is Kylee inside the bus.

This is the bus driving away with my daughter and me crying.

Theme Week

This week was theme week at school and I had so much fun with. Monday was Crayon day,

Tuesday was twin day, Thursday was super hero day and Friday was Bulldog/school spirit day.

So here are some pictures from the week.

This was Monday when she was a pink crayon.

This was Tuesday twin day. Her and her nurse Teresa are dressed like twins.

This was Thursday super hero day. Kylee is spiderman and Super Nurse Marsha.

Kylee on Friday for Bulldog day..a little to early in the morning for her.

Kylee and my niece Danelle at the pep assembly. Kylee's class is at the high school.

Kylee at the pep assembly.

GI Appointment

I called on Wednesday to schedule a GI appointment as it has been 3 months since we had seen him and Kylee has still been having #2 issues since December. It just happened some one cancelled so we were able to get in on Thursday. We got her there and they weighed her. She is now up to 28 lbs and 10 oz. Now this is good and bad. We tried for so long to get Kylee to gain weight and now she is at a healthy weight but she is starting to lean the other way. She gained 2 pounds in the last couple of months. So he was going to cut back on her calories but then our nurse brought up her thyroid test. She had 2 abnormal thyroid test in December and she was due to have it checked again in January. So we are having that checked next week. If she is gaining weight because of her thyroid we will have to see yet another Dr to get that all figured out. If her thyroid is fine then we have to cut back on her calories. This is very common in 1P36 kids (weight issues and thyroid issues). Then we talked about the diapers. He feels she has an over growth of bacteria in her small intestine. He told me all the symptoms and she had everyone of them. They treatment for it....same as c-diff. So every month from the 1-7 of the month she is going to take a medication. If the diapers stop or get better then we know that is what it is and she will stay on that routine. Medicine every 1-7 of every month. If it doesn't work there is a combo of 3 medications that she can take the same way as the other one (1-7 of every month). We are hoping one of those works. I guess you can test for it but you have to be able to follow directions and blow into a tube when they tell you to. Then we had one last issue. Kylee GJ tube has been leaking but only when we give her medication. It doesn't leak any other time. So he thought first we should try replacing it and if that doesn't help then we are going to go to the next size. He said it makes no sense that it doesn't leak any other time. He said Kylee you are a mystery and we all laughed because we know she is. He also said one last thing that really made me feel good...at the end of the appointment he said he always enjoys seeing Kylee and basically that she has a good family and good nurses that he enjoys seeing also. Just a nice fuzzy and makes you feels good. You need that every once in a while.

School

2010-01-24T18:16:00.003-06:00

Pictures

These are pictures of Kylee visiting her classroom for the first time and of her first day of school

School

Kylee LOVES school. She is having so much fun. When she comes home she is so bright eyed and acts like she just wants to tell me every little thing about her day. Her arms are waving around and her legs are just a going. She has totally blown me out of the water at how well she is doing. We are taking another step this week. The bus. Her normal pick up is suppose to be 6:55 am...right...like she is going to ride on the bus for an hour. The kids all get dropped off at 8:00 so the bus is going to come back and pick her up. That way the other kids will be all ready by the time she gets there (they toilet them, go over there paperwork..each morning the parent has to fill out about the night before, what they ate, what number we can be reached at). She is then going to ride the bus home with the other early childhood kids but that is just a 25 minute ride. Her nurse will also be riding the bus with her. She will be transported right in her wheelchair so we have gotten some portable ramps so we can get her all ready in the house and then just wheel her down the steps to the bus. So I will be out there tomorrow taking pictures and sending the camera with the nurse for pictures on the bus. We have also been sending a throw away camera to school in her backpack and the nurses have been taking pictures of her doing different things at school. I can't wait to see them.

This week at school is also theme week. Tomorrow they have to dress as crayons and she is the pink crayon. Tuesday is twin day so her and her nurse will be dressing like twins. Thursday is superhero day so her and her nurse are going to dress up but not sure as what yet and Friday is school spirit day so they have to dress in Bulldog gear. Should be lots of fun and I will take pictures each day to post.

Sitting

Sitting is something we have been working on forever but she is doing so good with it. She can sit for a while by herself and then when she gets tired she just needs a little support at her low back. She is also starting to catch herself when she starts to fall which is huge. She has caught herself several times while sitting and once while we were standing next to the sofa. Small steps for some but huge steps for us.

Beau

Please keep our friend Beau in your thoughts and prayers. He has not been feeling well lately and him and his family are having a hard time. He has a great mom and I know they will pull thru this. One step at a time :)

School

2010-01-10T17:05:00.002-06:00

School

It has been a while since I posted. Not too much new to tell everyone. School is going well for Kylee. She is almost up to staying for the full 3 hours and will probably start riding the bus next week. I called the bus garage on Friday and pick up is at 6:55 am and school starts at 8:00. I felt that was way to long for her to be on the bus so we are going to have them drop off all the other kids and come back and get her. So she probably won't be starting school until 8:15 but that is better then an hour bus ride. Then she will ride the bus home with the other kids which is only 30 minute ride home. Our nurses will be with her the whole time. I think on Friday they were happy they were there. Kylee was so sleepy when she left for school. The nurse said once they were there for a while she looked like her lips were blue and her hands and feet were so cold and her fingers didn't have good response time. Our nurse decided to check her BP and couldn't hear it. When she finally got it she said it was normal but very faint. So they were going to send her home when just like that she woke up and everything was great. It is funny how fast she changes. I'm still adjusting to her being in school. She just seems like such a big girl. She has a little red headed boy in her class that really likes to play with her (taking after mom with those red headed boys). She made us a wonderful Christmas present. It was a heart with her hand prints on it and a little poem about hand prints. Enough to make anyone cry.

Diapers Never End

Kylee has been having major issues with #2 diapers again. They seem never ending. Around Christmas time we thought she had C-diff again but the test came back negative. She was so uncomfortable and would cry until she would go to the bathroom. So we tested her again and it is still negative. Her bottom is getting so sore from going so much. You no more then change her and 5 minutes later you have to change her again. No fun for either of us. Then last week one day she had blood coming out of her stomach drainage tube. I called the Dr about it and he said he just thinks her stomach is irritate and to clean her stomach with salt water. I have to push salt water into her tummy and then leave it in there for a while and suck it back out. This is suppose to help it heal. Just one more thing to added to my nursing degree :)

We also found out that she was lacking some of her vitamins. Her milk she drinks is suppose to have everything she needs but she is lacking magnesium and selenium so 2 more medications to add to her day. She takes so many. We also have to have her thyroid checked again and if it that is not better she will be having some more medication added to her day. Her TSH level and her T3 and T4 were all abnormal for 2 tests in a row but they wanted to give her a month and see if it changes.

Other then that not much new to post. Things are going good. I have pictures but can't find the cord to the camera so will post them as soon as I can find it.

Kylee's 3rd Birthday and School

2009-12-17T21:37:00.007-06:00

Kylee's 3rd Birthday and School

Kylee's 3rd birthday is here and let me tell you it has been an emotional week. I think I have cried just about every day. Kylee started school this week and what a big step that has been. I think more for mom then for Kylee. She was suppose to start on Monday but had a snow day. So her first day was on Tuesday. I took her into the class room and her aide scooped her right up and took her over to the mat for story time and I felt like hey were is mom's transition time. It was like she had always been a part of the class. I left with tears in my eyes. When I came back to pick her up they said she did very well but fell asleep towards the end. When I started talking to her she opened her eye looked at me and raised her eye brows like mom you know what I am doing. She was pretending to sleep so she wouldn't have to do anything. She had off on Wednesday and went back today. When I pulled up to pick her and her nurse up the nurse had the biggest smile on her face. I knew it had been a good day and Kylee was still awake. She said that Kylee did great. Seemed very happy and stayed awake for the whole class. She also said how the therapist have such great tips and suggestions for us. I love having our nurses at school with her because I feel like I can at least live thru them since I can't be with her. I have been with Kylee every day for the past 3 years and to now give that up is really hard. I feel like I am being cheated. That everyone else gets to experience all these great things with her and I just get to hear about it. I know it is hard now but it will get easier. It was a big step.I am so proud of what a tough girl she is and how far she has come. She has had a really rough year medically and this past winter I wasn't so sure she would make it to her next birthday. With that being said my baby girl is turning 3 tomorrow. Where has the time gone. We will be celebrating with friends and family on Saturday with a pajama party. I would like to share this video with you. It is the same as last year but I have added another year to it and am greatful to be able to add another year. Happy Birthday my princess. Thank you God for the wonderful gift you have given me. I apperciate every day I spend with her.

Make photo slide shows at www.OneTrueMedia.com

We Are Home

2009-12-09T19:55:00.007-06:00

We AreHome

Well we got home from the hospital Monday day night so we were home before the big snow storm hit. They changed around some of her medication and she seems to be doing much better with that. We also had a ton of labs drawn before we left and are waiting for the results. They are testing her thyroid as the original TSH level came back high and then her T3 and T4 also came back abnormal so they thought they would test again just to make sure. They also did a full lab (can't remember what it is called but they took 20 mls of blood so they are checking for alot of stuff). They are checking all her mineral and vitamin levels to see if there is a reason that she is losing her hair and why it is so dry. One of my fellow 1P36 mom's said her sons hair does the same thing and he is also on Depekene so maybe it is a side affect to the medicine and said that zinc seem to help. I just wish she had her pretty hair back that I could put in pony tails especially now that she will be going to school.

Kylee's Birthday

Kylee's Birthday is fast approaching. December 18th she will be turning 3...wow where did that time go. She is starting school next week. I got all the paperwork to fill out today for "regular" school stuff for her. It just blows my mind. Our early childhood is at our high school. When I took Kylee for a visit to school we went at 8:00 and all the kids were walking into school. I wanted to cry thinking I was talking my little baby into the big high school. As we were making our way thru the hallway with all this high school kids I was thinking...clear the way...watch out...precious cargo coming thru. I guess it is time to let reality set in and realize she is growing up.

My goal was to have Kylee sitting on her own by her Birthday but I am thinking she is going to be a one finger sitter. I have to just keep one finger on her lower back to keep her sitting on her own. I think if we wouldn't of had these set backs with seizures we would have made it so I am hoping for shortly after her Birthday.

We are having a Pajama party to celebrate Kylee's birthday and her moving into her big girl bed. So everyone has to wear Pajama's. Should be fun. I can't wait.

Song

One of my 1P36 family members sent me the below link with a song called The Life That Has Chosen Me. It is such a good song and thought I would share. It is so true. It says don't pity me and I say that all the time. I hate it when Dr's says I am so sorry whenever I tell them my daughters diagnosis. I know it is only natural to say it but...sorry.... sorry for what....that I have a beautiful daughter that has taught me so much about life and made me the person I am today. Instead of showing me pity...offer me words of encouragement...let me know I am doing a good job...that I am a good mom....that I have a beautiful daughter or lend me a helping hand or a hug but don't pity me. With that being said....THANK YOU everyone for all your kind words and encouragement. It keeps me going everyday and I would be lost without each and everyone of you.....you help in your own way weather you think you do or not.

http://www.youtube.com/watch?v=evZtEJOJ948

Increased Seizures

2009-12-06T20:58:00.004-06:00

Hospital/Increase Seizures

So...we are back at the hospital. Kylee was sent to the hospital on Thursday for increased seizure activity and she was having crying spells that seemed to last forever (45 minutes to an hour or more). We took her to our primary Dr on Thursday afternoon and they told us she had an ear infection. We then were sent home and had her cry and scream the whole way home. It scared us so much that we called down to Milwaukee and begged them to help us. They told us to take her to the ER. Once we got to the ER she was fine but they put us in patient to watch her. They then decided on Friday to send us to Milwaukee. We got to Milwaukee and they felt it was all related to the ear infection. I said I disagreed and wanted her hooked up to the EEG. So she got hooked up in the EMU (epilepsy monitoring unit-which was closed for the weekend until they had to open it for Kylee) where she is watched on a camera 24/7 and someone has to be with her 24/7. Which good thing Grandma Janice came with me so I get a break once in a while. They also started a new meal program at the hospital that is called 2/4/6 and for that amount of money you can get different meals brought right to your room. You just have to purchase pre-paid tickets to give to them. So needless to say we had a very nice supper tonight with that. So back to the monitoring. They watched her and said she is having about 10 increases on the EEG an hour but isn't showing physical signs of a seizure. They said that because of her underlying condition she will never have a normal EEG which I knew. The Dr took me back in the room where they watch her and let me watch her and watch the EEG so I learned alot about it (I love knowing what I am dealing with...I always want to be well informed). So they have switched around some of her meds and increased one. They will draw labs in the morning and watch her over night and if all is well then we will be on our way home tomorrow. As far as the crying we have found out we have a new girl that now has a voice and feelings. They think her brain has "grown" and she is now able to start to voice her feelings and let me tell you she sure does. She cries when the Dr's touch her, she cries when she is tired, she cries when she wants to be held. All which are "normal" things a child doest and I am so happy to hear it but it took me by surprised because she was so non-verbal up to that point that I thought she had to be in extreme pain which she probably was from the ear infection.

School

I probably should get back to the room but just wanted to post that Kylee starts school next Monday. She will be going Monday, Tuesday, Thursday and Friday from 8:00 am to 11:00 am. We are so excited to be having her going to school and everyone seems so wonderful. She has a very young teacher (Ms. Heather) who seems to be full of energy and a lot of fun. Kylee will also be having a one on one aide (Lisa) as well as a nurse from home with her while she is at school and mom will be standing outside the window taking pictures of her. I said I am the schools new paparazzi.

School

2009-11-18T09:26:00.003-06:00

Pictures

Kylee at story time at the library for Halloween

Kylee and her brother at story time

Kylee in her swing in the basement. She loves to swing. Can't wait to get our new swing.

When Kylee is tired she just falls asleep where ever she wants to.

School

Our life has been so busy the last few weeks. Kylee has been home from the hospital for a while and feeling much better but we have been busy with getting her ready for school. We have had lots of meetings with the nurse, PT, OT, Speech, vision teacher and mobility specialist. Kylee's IEP is on Dec 2nd and she will more then likely be starting right after that with a slow transition into school. How time has gone by so fast. It seems like just yesterday we were sitting in the NICU with her and now she is going to school. It brings tears to my eyes just thinking about it. I think she is really going to like school and do wonderful. We go on Friday to meet her teacher and see the class room as well as meet with speech and PT.

Nurse

We have hired 2 nurses as one of our nurses has left. We hired a Tuesday nurse who I must say I am in LOVE with. She has lived the life and I think she will be a great resource for me. She has a 23 year old daughter with CP and decided to become a nurse after that....hmm....sounds like the foot steps I want to take. We have also hired another nurse for 1-2 nights a week and for an occasional weekend. She is a "new" nurse but I always say that is not bad as they often have fresh new ideas.

Big Girl Bed

Kylee has been sleeping in her big girl bed for a week now and loving it. My dad has made a few adjustments to a twin bed so she has more room to roll around. She is so happy in there she smiles and laughs every time you put her in it. I can't thank my dad enough for everything he has done for her. He also made her a wooden bench for us to practice sitting on and also to place toys on while we are practicing sitting. Kylee has started to get more interested in toys and is reaching out for them which she hasn't done since she was 6 months old. We are so excited with the progress she is making developmental wise. I will try to post pictures of the bed and bench next time....I also want to post pictures of her on her school trip on Friday.

Standing
Here is a little video of Kylee standing next to the sofa. She has to lay over the sofa but it is a start. This was my first time trying to tape anything on my camera so it is side ways and doesn't last long because she moved her leg and I thought she was going to fall but she was only readjusting herself.

Hospital Visit

2009-11-04T19:12:00.003-06:00

Don't have much time to post right now but just wanted to let everyone know that Kylee has been in the hospital since Saturday and we just got home today. She has c-diff yet again and had stuff coming out both ends on Saturday so we took her in for what we thought would be a quick IV and sent on our way but it didn't happen that way. She is doing much better and we are all happy to be home. I will try to post again soon.

Trip to Milwaukee

2009-10-16T21:18:00.004-05:00

Trip to Milwaukee

So Kylee and daddy made the trip to Milwaukee on Thursday and things went really well. In fact I am very jealous. Out of the 3 times Kylee has gotten her GJ tube replaced I have not been able to go back in the room with her. Jason acutely got to go back and stay in the room the whole time. He said that when they pulled the old one out one of the ladies looked very strangely at it and said oh we usually take those out. Here they left what is called the stringer inside her. I think it is a device they use to help guide it in. Didn't sound to healthy but at least it is out and we have learned once again that we should just go to Milwaukee and not have anything done close to home. She also saw the ENT and said her ears look great so hopefully we make it thru the winter with no ear infections.

Physical Therapy

Kylee is doing so well in PT. I am thinking about taping a session so I can post it because it is just unbelievable how well she is doing. She can stand up with much less support then she use to. On Thursday the PT just kind of had to hold her at her waist and chest but she did all the leg work. She is also getting better about being in the crawl position and he said she is ready to crawl. He thinks if we just work with her on it a little every day that she will learn to crawl. I'm always so happy after PT because she does so well. I am also sad thinking that she only has one more session with him before he leaves us. That will be very sad. He has come so far with her. Oh ya...he also brought to my attention that Kylee has grown 12 inches in one year. She was 26 inches last year at this time when we ordered her stander and at her last Dr visit she was 38 inches. CRAZY!!!!!

Bed

We are in a bed search..Kylee has outgrown her crib but couldn't decide what to do for her next bed. We knew there was no way we could afford a sleep safe bed. So hopefully with the help of our wonderful Grandpa Eddie (my dad) she is going to have a new bed by her birthday. We are purchasing a used captain bed (a bed with drawers under it) that has a very high head and foot board. Grandpa is going to sand it down and re stain it for use and then make side rails for it out of wood and plexus glass (kind of like the sleep safe beds) that will be on hinges to drop the sides down. Should work out good. Her birthday is for a couple more months but we have decided to do a Kylee needs a new bed party and so we are having a pajama party and everyone has to wear there pajama's. Then we are going to ask for new things for her "big girl bed".

THANK YOU ASHLEY

Kylee got the best present in the mail a couple of weeks ago. We usually put a plain old white cotton 2x2 around Kylee's feeding tube site. One of Kylee's friends had a really cute one (Beau) and so I asked his mom where she got them from and she said her mom made it. So not long after that we got a gift in the mail with all kinds of girl cloth 2x2's. There was Hello Kitty, flowers, lady bugs and then a Santa one for Christmas. They are so cute. I even got the laundry bag to wash them in. It was the best gift every. I can't thank Ashley and her mom enough for them. I also have to let you know the lady in Milwaukee that put her tube in commented on how cute it was and wanted to know where we got them from. Jason said from a good friend :)

(I will try to post pictures in the next couple of days...I promise).

Eating

2009-10-11T18:13:00.002-05:00

Baby Food and Milk

Kylee has been doing really well in the eating department lately. I know we have a long long ways to go but it is a start. She has been eating some stage 1 and stage 2 baby food pretty well. She can eat anywhere from a couple teaspoons to a couple tablespoons. She also started taking some liquids out of a bottle. She isn't taking a lot...about 1.5 ounces but it is a start. Sometimes I just have to let it drip in her mouth and she doesn't have a good suck eat but I will take whatever I can get. She makes the sucking motion with her lips just doesn't have a strong suck. So we will just keep working on it. Practice makes perfect. We have also gotten her down to only having to be on her feeding tube for 18 hours which is so nice. Now it is time to push the luck. The Dr said to shoot for 14-18 hours but that some kids can do 12. He said it just depends on what she can tolerate.

C-diff

What can I say about C-diff...it is just no fun. I feel like the number 2 diapers never stop. We are just about done with the medicine it is still coming out in full force. I am thinking we are going to have to do another sample and probably another round of medicine. We have decided to purchase some disposable bed chucks to help save on the laundry otherwise we were having to change her sheets 1-2 times a day because when she goes it goes everywhere. We also had to clean our carpet today as she had a major mess earlier in the week and another one today.

Therapy

Kylee has been doing really good in therapy. She is still able to stand on the side of the sofa with no knee immobilizers for about 10 minutes. She is still doing good at sitting by her self we just have to increase her strength. She gets really tired out with it. Her HOPSA dress (a therapy vest hooked up to a pulley system.....I will have to take a picture of her in it and post it....she looks like she is ready for take off in it) she is doing really well in also. She can only stay in there for about 5 minutes but she is very active it in for 5 minutes. She is putting her legs down and swing herself all over the place in it which no one really thought she would do anything in it so I guess that is a big step. Her swing we haven't been using much as it is not the swing that the therapist wanted so we are in the process of trying to purchase the correct swing. The one we have is for a bigger child and not to comfortable for her.

Kylee has started to do her own therapy...she rolls her way over to the sofa...puts her legs up on the side of it and then lifts her butt off the ground. She does it over and over and over. She loves doing it. It is great to help strengthen her legs but it is soo funny how much she loves to do it.

Our PT Steve is leaving at the end of the month and we are really going to miss him. He works so well with Kylee and she has come so far but at least his time with her would have been almost over with anyway as she will be starting school soon which leads me to my next topic.......

School

So the whole school process seems to be a very long process and I feel like we have been working on it forever but I am think there should be an end in sight. I have signed all kinds of paperwork and talked to all kinds of people. We still do not have a start date yet but for sure by her 3rd birthday however we were hoping to do a slow transition starting before her 3rd birthday. We have also not decided if she will go in the morning or afternoon. She like to sleep in til 9:00 but then she takes a nap at 2:00 so really neither fits into her schedule but I guess we will have to get her on a new schedule once we find out.

I have to laugh because I am so afraid to take Kylee to the Dr to get her flu shot because of all the germs but yet I am not even thinking twice about sending her to a germ infested school.

Appointments

This week Kylee has appointments in Milwaukee on Thursday. She is getting a new feeding tube placed in the morning and then ENT follow-up in the afternoon. I think daddy (Jason) will be making the trip all on his own so that I can work. He does a wonderful job with her but it is hard for me to let go and let someone do something that I normally do and not be in on the appointments. I guess I have to let go some day :)

C-Diff Again

2009-09-27T13:39:00.002-05:00

C-Diff

Yes...Kylee has c-diff again. I am thinking she has had it for about 2-3 weeks now and we just got it diagnosed on Saturday. She started with a lot of #2 diapers and we thought maybe we were running her feeds on her pump to fast as we were trying to shorten the time she had to be hooked up to the feeding tube. So we dropped her down and she still continued. I called the Dr and said I wanted her tested for c-diff. She sent all the paperwork over and I went and picked up the kit right away. The lab tech told me I needed 2 tablespoons of stool so it took me 5-7 days and I wasn't even close to that. It is so runny it ends up soaked in the diaper or everywhere else. So I took it in and asked if they could run it on what I had and a different then what gave me the test said we had way more then they needed. She has no idea why they would of told us we needed so much. So it came back positive yesterday and we started on the medicine yesterday. She also was starting to become dehydrated from going so much that I was worried she was going to end up in the hospital with an IV. We have such wonderful nurses that they just got her going on the pedialyte and lots of water and she was good to go.

Procedure

I was worried that with the c-diff Kylee's procedures for Monday would be cancelled but they said we are good to go. They will just put us in isolation once we get to the hospital. So on Monday we are going to Milwaukee and she is having an upper scope done with biopsies of her throat, her mass removed from her ear and a culture of her ear so we are sure to be treating the non-stop ear infection with the correct medicine and a new GJ tube (feeding tube). So it will be a busy day but hopefully we will be done with procedures for a while.

Therapy

Even with Kylee not feeling well she has been doing great when it comes to therapy. As I stated she ate a whole jar of baby food which she continues to eat pretty good. She is getting better at her sitting and she is now able to stand by the sofa with nothing on her legs but her orthotics. She kind of lays over the sofa cushion but just the fact that she is keeping her legs down is huge. Usually she gets them tucked under her butt as fast as she can. We also got some new equipment. We got an airwalker swing for in the basement. It was donated by another family. Kylee loves to swing but winter is coming and we won't be able to be outside much. We also got something called a HOSPA dress. It is kind of like a older style johnny jumper. It is a suit that goes around her body and then it is on a pulley system. This is to help her weight bear on her leg but to also teach her cause and affect. Like when she kicks her leg she spins so they want to teach her that if she does it again she will get the same response. Accidental movements become purposeful movements.

Week Ahead

So Monday is Kylee's procedures, Tuesday is speech and hopefully she does as well as last time, Wednesday we have my mother's brother's funeral and I also have to have Kylee's paperwork for school all signed by Wednesday and we have physical therapy on Wednesday. The rest of the week nothing to exciting.....just how I like it :)

**I have pictures of Kylee in her swing and standing by the sofa that I will try to post soon...we are on our way to our block party but wanted to post an update before we left otherwise time gets away from me.

Eating

2009-09-17T09:47:00.000-05:00

Eating

Just wanted to post a quick note that Kylee ate a whole jar of number 1 baby food yesterday. We are so excited about it. She ate most of it during speech therapy and I was telling her how proud I was of her and she gave me the biggest smile ever. It just melted my heart and wanted to make our nurse cry. I love moments like that. Then she finished the jar off at supper. Small step for some but a huge step for us. I hope she continues on this path. Just wanted to share the news with everyone.

New Pictures and Appointments

2009-09-08T19:06:00.003-05:00

Pictures

Kylee getting ready to go for a walk with her nurse.

Kylee was a ladybug for Halloween at the campground.

Kylee again getting ready to go for a walk.

Trying to get a nice picture of the kids is hard work. Guess this will have to do.

Appointments

We have had 2 important Dr appointments in the last week. We hard cardiology which we were told her heart looked really good considering how high her blood pressure has been even with the increase in her blood pressure medicine. If she continues to have high blood pressures we are going to have to increase her again. Her left side of her heart is also still leaking but is not leaking anymore then what it was back in February so she is not too considered about it at this time. So all in all a pretty good appointment. We don't have to go back to see her for 6 months and just have to continue to call with her blood pressure results.

We had her ENT appointment today in Milwaukee. He said she has a granuloma. It is basically a build up in tissue. This is the reason for her constant ear infections. The granuloma does not allow the drops to get all the way and it always is basically a breading ground for infection. We are going to use ear drops until she has her scope done on the 28th and then the ENT is going to come in and remove it and then if it still looks infected they will do a culture to make sure we are treating it with the correct medication and then they also said sometimes they have to suction out the ear so everything gets out so the ear drops get all the way in. So all in all was very happy to hear that we should be able to get rid of the ear infections soon. He also said he don't feel her tonsils and adenoids need to be taken right now. He said he feels that the risk of taking them out doesn't out weigh the benefits. He said if her snoring gets worse or she has more apnea episodes we can revisit that decision.

Therapy

Kylee has been doing pretty good in therapy lately. She is able to sit by herself for about 20-30 seconds. We have been using knee immobilizers (thanks to Alayna's mom) and she has been doing really good standing next to the sofa. She also is doing really good with helping to get dressed and undressed. She picks her head up to take her shirt off and then she often leaves it up until you put the next shirt on. Sometimes you even have to tell her it is ok to put her head down or she just keeps holding it up. She is also starting to reach out more to grab at things. All may seem like little things but are huge to us. We are also getting started again on the school process. We started last year towards the end of school and decided we would finish up when school started again and are hoping she can do a early start (October or November) and do a slow start instead of throwing her into it in December. As always enjoying every minute with Kylee and am enjoying all the changes we are seeing in her. She shows such great potential.

GI

2009-08-20T18:59:00.002-05:00

GI Update

We had Kylee's GI appointment today and it went really well. This was my mom's first time meeting Dr. Noe and she was very surprised at how well we meshed. We both had the same thought process on many things. One of my issues was her huge weight gain (she gained 6lbs in a couple of months). We are going to watch her for another month and see how she does. If she continues to gain weight then we are going to decrease her calorie intake and give her more water. Right now she is 20% for weight and 25% for height and he wants the two to stay pretty close to each other. We also talked about how she has been throwing up again every night and how we didn't seem to have the problem for a while. We have decided to schedule her to go in and have a scope put down her to check everything out to make sure there isn't anything going on. One thing several of the 1P36 kids have is something called EE (it has a much lager name then that but no way could I spell that). This would help rule that out. He said if she has EE it will be one for the medical books (the milk she is on is one they use for children that have EE) but it is worth ruling out as she does have many symptoms of it. We also get to work her from being hooked to a feeding tube 22 hours a day to 14-18 hours. I am so excited about that. So starting today she is going to be going to 21 hours and each week drop one more hour (if she handles it ok...it can increase the #2 diapers) until we get to 14-18. He said some kids can even handle 8-12 but that is pushing it. So for now she will have 3 hours to be a free woman.

Blood Pressure

Kylee continued to have some higher blood pressure readings so they ended up having to increase her one heart medication to help control it better which it seems to be working. I was afraid it would drop it to low but it doesn't seem to have done that. I'm happy it seemed to be a quick fix. I like it with things work really easy.

Radiothon

I did the Radiothon last week for Children's Hospital and really enjoyed it. It was so nice to answer the phone and talk to people with such big hearts willing to help others. One man from the town I live in called and gave $30 a month. He said he does it every year. It was also nice to meet other families who have similar situations. A few of the families had actually lost children and still come to help out and think they are such a wonderful place. I know we are very grateful to them and would be lost without them.

Summary of Week and Week ahead

Not too much to report for the week. Same old same old. Lots of therapy. Kylee is doing really well. She is standing in her stander for about 15 minutes a day. We are also getting a new piece of equipment called a HOPSA which will also help her with weight bearing on her legs. A lady came out from the state and said she has marshmellow feet and needs to get weight bearing on them. Eating seems to go back and forth some days she does really well and others not so much. We just keep working at it. I am kind of hoping by only feeding her 18 hours a day maybe she would be more hungry threw out the day when she is not hooked up that she will want to eat more. She also has really been doing a great job at letting you know when she likes and doesn't like something which is so nice. She is really into TV lately. The other day I had on a educational cartoon just real plan nothing to exciting and she wanted nothing to do with it. I turned on elmo that had singing and dancing and she laughed and smiled and had a blast. Then one other day I said she couldn't watch anymore TV and changed the channel and she started crying. I turned to cartoons back on to see if she would stop and she did. It is just nice to see her respond to things appropriately and letting he know when she doesn't like something. Not that it means she always gets her way but at least you know how she feels about it. Nothing to exciting for the week ahead. Just therapy and no Dr appointments until September 2nd (cardiology).

Children's Radiothon

2009-08-08T06:59:00.003-05:00

Children's Radiothon

This week (Wednesday to Friday) is the Chilrdren's Radiothon on 95.9 Kiss Fm/105.7 WAPL and 104.9 (The Breeze). This will be our 3rd year with the Radiothon. When Kylee was 6 months old we recorded our story and they continue to play it. Our story tells about 1P36 (all though I have learned alot about it since then) and how when Kylee was 10 days old we had to do CPR on her and how I don't feel she would be here today if it weren't for Children's. All the stories they play are very touching and you can't help but cry. On Friday I will be answer phones to help raise money for Children's which all goes for a good cause.

On Thursday August 13th is Miracle Treat Day at Dairy Queen. For every Blizzard purchased that day $1.00 or more will go to Children's Miracle Network which goes to your local Children's Hospital.

Seizures

On Thursday we made another trip to Milwaukee (this was a planned one). Kylee has had a little increase in her seizure activity. She has been doing some head dropping. So they have decided to increase her Depekene medication just a little bit in hopes that will help. We also learned more information about how to use her emergency seizure medication. We are to use it if she has a seizure lasting more then 5 minutes or a cluster of seizures in one hour lasting more then 5 minutes. There probably have been a few times we should have used it as we were unaware that we should use it for a cluster in one hour. They also told us typical protocol is to call 911 after using the medication in hopes of saving us a ER visit. I laughed. Show me a town around where we live that you call 911 and the ambulance doesn't take the patient to the ER. So we have decided that the first time we use it we will call 911 but after we know how she responds to it we will keep her at home and monitor her to decide if 911 needs to be called.

Blood Pressure

We were able to get in contact with our nurse in the special needs clinic in Milwaukee and talked about the blood pressure issue. She asked me if I felt like she could have had a migraine during that time her blood pressure was high. Now that I think back to it I think she could have. She was squinting her eyes and just didn't really want to move much. Once she fell asleep and slept for a few hours she woke up and was completely fine. So a migraine makes sense. She also asked me if she had gone back to the vomiting once a day (between 8-9 pm) and I said she has. In fact she had a huge vomiting episode the night before the high blood pressure episode. She said that there is something also called a stomach migraine (she gave me a more technical term) and that kids who have dysautonomia often have migraines (both head and stomach) and that is sounds like they may be what is going on and that they can give her a medication to help prevent it (which I am also on the same medication for migraines). I asked if there was testing for dysautonomia and she said there is but they see enough children with it that they don't usually test with it. I asked if it was safe to say Kylee has it and she said she thought it was pretty safe to say but that she would check with our special needs Dr. Our nurse with the special needs clinic is a wealth of knowledge and I would be lost without her.

1P36 Conference

Last week was the 3rd annual 1P36 conference in Indiana. Each year it is in a different location and they are already talking about where the next one will be. We have yet to make it to a conference (well we just found out about them a year ago) but am hoping to some day make it there. The other parents have done a great job updating us on what was talked about. On the side I have a list of other blogs. Whitney's family did a great job updating on what they talked about as well as Alayana's blog (which has a ton of pictures of kids with 1P36 that were at the conference). I also learned from Alayana's blog that it is pronounced 1-p-3-6 not 1-p-36 so I will have to work on saying it correctly. Alayan's mom also noted that one Dr said "You are the pioneers of 1p36. You all are making a difference. The data from you will show up someday in medical books." I thought that was pretty neat to hear. It is nice to know that we will be able to hopefully make lives for other families who get this diagnosis a little easier. Kylee has also been part of a study with her cardiologist as we had done some testing on Kylee's heart in the womb and she is the first patient they have that they have been able to follow from before birth. Every time Kylee's information is printed in a medical journal she gives me a copy of it for her memory box. So all pretty exciting.

Milestones

Kylee has began to roll over again. She went thru a period after her huge weight gain that she wasn't rolling. I picked on her and said she couldn't get the big cabus over. However she has gotten it figured out and is none stop now. She also has been doing a great job with sitting. She still needs just a little support at the low of her back but she can sit alone for about 30 seconds which gives us hope that she will be able to do it. We also got a bench (thanks to Alayana's moms post about the adjustable bench) that she is tall sitting very well on and we also use it to practice tall kneeling and playing with toys. We have also been working on feeding which is getting better. she fights you to get it in but once you get it in she loves it. She gives you a big smile and does a great job working it around in her mouth and swallowing. As I learned from the information I read from the conference 1p36 kids need repetition repetition. So that is what we will do. Our PT said he is very hopeful for Kylee. She shows she has it in her we just have to keep her well enough and strong enough to meet those milestones.

Week Ahead

So the week ahead is....new orthotics on Tuesday. Wednesday we are doing a program with the state and county called every move counts. It is a few hours long and they do different things with Kylee and then we video tape her. Once we are all done we sit down together and watch the video and try to determine if any of her moves she made were "purposeful" and what we can use these purpose movements for. Like she likes to kick her leg up and done we often take that as her way of saying she liked something and wants more. So this should be a long but interesting day. Friday is the radiothon and I will be answering phones. Then next Sunday we will be celebrating Keegan's 1st Birthday. It is hard to believe he is going to be one. Time goes by so fast.

We Are Home

2009-08-02T16:53:00.002-05:00

We Are Home

So on Friday we had an episode with Kylee as I stated below. Her blood pressure was 150/100 and she was just no acting her self. We decided to take her to the ER in New London (which we usually skip and go to Neenah) and when we go there she was 150/98. At this time she was sleeping. She slept for a while and when she woke up she was acting just like her regular self and her blood pressure was back to normal. Strangest thing ever. Our cardiologist decided to have us sent to Milwaukee so that they could monitor her for a while. We went to Milwaukee and she never had another episode. At this point no one really knows what happened to her. They are thinking she may have had a dysautonomia episode which was a diagnosis we had talked about this past winter but never have gotten a "formal diagnosis". It is mainly were her body doesn't respond to things the same as someone else. She does not produce tears and never sweets amongst other things. So for now we are chalking it up to that and just have to wait and see. Kylee always keeps us on our toes.

Just wanted to note that we got to stay in the "new" part of Children's and man was it nice. You no longer have to share a room with anyone. The rooms are huge including the bathroom. There is a little separate section for parents that has a TV, desk, double pull out sofa and then you just pull the curtain to separate yourself from Kylee's area. The Kylee's area is huge and also has it's own TV, desk, sitting area, nursing area, shelving and a safe. It is hard to explain but all I can say is it is huge and very very nice.

Week Ahead

So we just got home today from Milwaukee and have to head back down on Thursday for our neurology appointment. Kylee also has speech this week. Family reunion on Saturday and then hopefully a little "me time" on Saturday night with a good friend, good drinks and music.

Once again THANK YOU to everyone for all your help while we were gone and for all the prayers.

In The Hospital

2009-07-31T20:30:00.001-05:00

Just want to leave a quick note to let everyone know Kylee is in the hospital in Milwaukee right now. We had an episode of high blood pressure this morning (150/100) and unresponsiveness so we took her to the ER and she was taken to Milwaukee Children's. Don't know much more then that but will try to update as we get more news.

Christmas in July and Pictures

2009-07-23T18:43:00.008-05:00

Christmas in July

So it is like Santa made a stop at our house this week. Kylee got her new car seat ( I have a picture below but it isn't a good one. I will have to try again). It is huge. It takes up about half of my back seat but it is super nice. It offers so much support for her head and trunk. We will forever be greatful to the annonymous donor who purchase it for us. We also got a video monitor. We are now able to put the monitor on Kylee and watch her while we are in another room or outside. You can also just push a button on it while in another room and make it play music. This week we are getting a double jog stroller. It will be so nice because then I can take all 3 kids for a walk at night or if I would have to go to the store or an appointment with all 3 kids I would have something to put them in. Kylee can't sit in a shopping cart so I am limited on where I can take her. So lots of new and exciting things.

New AFO's

Since Kylee had her big growth spurt she is in need of some new AFO's for her ankles. She use to only wear them for an hour a day but now she is wearing them more often. She usually wears them all day other then when she is sleeping. Her new AFO's are going to be pink with straps that have different colored hearts on them (they sure didn't have many choices for girls...I was hoping for some pink camo or princess ). I have pictures below of her getting fitted for her new AFO's. They come right to our home and do it. That is so nice.

Kylee's surgery and Ronald McDonald House

As I stated in my last post Kylee's surgery went really well. She recovered very quickly from it. I have a few pictures below of her getting ready to go into surgery and then a picture of her at the Ronald McDonald House (which is the best place ever....so whenever you go to McDonald's if you can put the extra change in the bucket it goes for a good cause). The last picture is a picture of Collin with some of the pop tabs we collected for the Ronald McDonald House. Collin was so proud to have collected so many. Thank you to everyone who has helped us collect them.

Kylee waiting to go in for surgery

Kylee sitting on Ronald's lap looking up at him

Collin in his PJ's holding one bag of pop tabs. He is so proud.

Kylee's New Glasses

Kylee got a new pair of glasses. This is the last pair we will be able to get that has the loops that go around her ears. I guess we got the largest size in that kind. I can't imagine not having them because I don't think she will leave them on. She does so well with them. She never takes them off or pulls at them.

Here We Go Again

Kylee once again has double ear infection. We just can't seem to get rid of them. Her tubes are still in place but they just keep coming back. So it was decided that this time we will do both ear drops and antibiotic. Hopefully that will kick it and she won't get c-diff back from the antibiotic. She is doing much better since she has been on the meidcation. So hopefully the week to come she will be feeling better and we can have a low key week. Just therapy and no Dr appointments.

Quick Update

2009-07-09T19:52:00.003-05:00

Just wanted to give a quick update. Kylee's surgery is over. Things went well. They gave her a little something to relax her before hand which did the opposite and made her very hyper but we got to hear noises from her for the first time in a long time (she was trying to talk). The Dr said there was a little dried blood around the port which he hasn't seen before but wasn't concerned about it. The worse part was that it took her FOREVER to wake up. They put her to sleep at 11:30 and she did not wake up until 4:00. Once she woke up she was full of energy and as happy as could be. I have lots more I want to write about but don't have the time right now. I will post again soon and post pictures. Just wanted to let everyone know it is done and she did great. Thank you for all the prayers and support. We have such wonderful friends and family.

What a Big Girl

2009-07-01T20:18:00.003-05:00

Weight

Kylee's 2 1/2 year old check up was on Thursday and she has grown so much. She has gained 6 pounds since March. She is currently 26 pounds and 35 inches long. She went for nothing on the growth chart to 20% for weight and I think 25% for height. We were so excited. That is huge for a 1P36 child. This has however made me worry about what is down the road for her. Typically 1P36 children are either extremely under weight or extremely over weight. I am just worried it will go to the extremely over weight. I know no pleasing me. If I'm not worried about one thing it is another. She also had double ear infection at the time of the visit so we are yet again trying another ear drop. We just don't want to give an antibiotic. She also had a slow leak in her GJ tube so we had to take her in to get that replaced. So all and all a great 2 1/2 year old check up.

Car Seat

Well today was the meeting at the Cerebral Palsy (CP) center for Kylee's car seat and they called and said that they approved us and that they are paying for it in full. We were so excited. They said an anonymous donor is paying for all of it and that HE loves getting thank you's from families so we are going to take a picture of her in it and send it to the CP center to give to him. We are so grateful to him. We will be getting it on July 21st and I hear it is rather large and some call it a "lazy boy" because it is so comfortable. It will fit her to 105 pounds and is a Britax Traveller. Only negative is it only comes in brown so no pink for the princess :)

Surgery

Kylee is all scheduled to have her surgery to remove her port next week. We are going down on Wednesday and then the surgery will be done on Thursday. I am a little on the nervous side about it but I know it needs to be done. She is not being put so far under that she will need breathing tubes so that makes me feel a little better. Please keep us in your thoughts and prayers on Thursday July 9th.

What a Week

2009-06-20T08:59:00.003-05:00

We had one heck of a week this week. We had several deaths. Collin had to go to the ER on Monday and get his first stitches. He got wound up in a swing and got the skin on his side caught in it and it pulled the skin. It happened at our sitters house and Jason picked him up not knowing it happened because it had just happened a few minutes before he got there. He called me and I could just hear Collin screaming in the background. I'm sure it will be the first of many. With all that I have not been sleeping well at night either. I have been sleeping for about an hour and then am awake for about 4 or 5 hours. So I am tired out.

Surgery

Well we have decided to go ahead with the surgery to remove Kylee's port. It will be taken out on July 9th. We are going down on the 8th for her pre-op and then it will be taken out on the 9th and we are hoping to come home on the 9th if all goes well. We decided that if we are not going to be needing lab draws every week like we did when she first started with all her seizure meds that we shouldn't be risking the chance for infection and should get it out. Plus it saves me a monthly trip to the dr's office to get it flushed with heprin if she is not using it. So that is the plan for now. We are going to get our name on the list for the Ronald McDonald House 5 days before the surgery (that is the new policy for the one by us..you use to be able to call anytime even if it was months in advance) and hopefully we get a room there. If not I do know how to get to the Hampton so we can always stay there. You get a discount so the room is only 50 dollars however it is sad when the staff that works there remember you. The last time we stayed there the lady said to my dad oh your grand daughter is still in the hospital.

Glasses and Equipment

Kylee's glasses came in yesterday so I am going to take her in on Monday to pick them up. I can't wait to get them. My mom and our nurse Marsha went in to try the frames on her so I didn't get to see what they looked like on her. I just seen them in the book when I picked them out. I was also very happy with the price. The last pair we got cost us around the $200 range. They told me the state did not cover anything. This new place we went to said the state cover lenses so we didn't have to pay for this. So nice. Speaking of state...Kylee is up for her Katie Beckett (her insurance with the state for disabled children) eligibility already. It goes so fast. Every year you have to fill out a huge packet of papers and the every other year you fill the papers our but also have to have a visit. This is our year for the visit. There is no doubt in my mind that she won't qualify it is just the time it takes to do all of it.

The CP center of Green Bay is going to see if they can help us purchase Kylee's car seat. I have to once again fill out a ton of paperwork and then they will sit down and discuss and decide if they will help us or not. I didn't know that they would do that because Kylee does not have a diagnosis of CP but I guess that doesn't matter.

Kylee has really been getting in to watching movies lately. Our nurse Marsha brings her laptop and then puts Kylee in her chair with the laptop as close to her as possible. She has been watching her sign language videos and her Rock and Roll Strawberry Shortcake (thanks for the movie the Klings...she loves it). So I have been asking around for a "junk" laptop and someone at work thinks they have one for us. She is going to try a movie in it this weekend. I will be so excited if we get one.

Does She Really Understand?

Lately Kylee has been answer questions when you ask her something. Well answering you non verbally. It almost seems as if she understands you. Which makes you wonder if she understands more then you think. The other night she did not want to get her teeth brushed and I kept saying Kylee doesn't want her teeth brushed and she would shake her head no. Then I asked her if she liked her Strawberry Shortcake video and she got all excited and starting smiling and laughing. Signing all done to her when she is all done eating and she shakes her head yes or smiles. Now she doesn't do this stuff every day but a lot so it makes you wonder. If only I could get inside that little head of hers and know what she is thinking.

Happy Father's Day

Just want to say happy father's day to all the father's. Kylee is very lucky to have a very special father. He takes such wonderful care of her. Life is not always easy when you have a child with special needs. He does things for her things that I know he never in a million years would have pictured himself doing. Taking in #2 samples to the hospital, checking oxygen levels, dealing with feeding tubes, endless Dr appointments and the list goes on and on. Not only is he a great father to Kylee but to our sons also. I just want to take this moment to say THANK YOU for all that you do. I know I don't say it often enough. Happy Fathers Day!!!

Our hearts are heavy

2009-06-16T14:29:00.004-05:00

Our Hearts are Heavy

Our family has had a rough week this week. On Saturday morning we got the news that our cousin Kenny (my mother's niece's husband) had passed away unexpectedly while on a bus trip (he was a bus driver) to Washington DC of a heart attack. On Sunday we received the new that my Uncle Larry (my mothers brother) had passed away and this morning I was given the news that on Sunday Bonnie Barrington (a faithful reader of Kylee's blog and a proud grandma of Payton whose carbridge is linked to Kylee's page) had also passed away unexpectedly from a heart attack. With that being said our hearts are heavy and our thoughts and prayers go out to all 3 families. Always live life to the fullest and enjoy each day.

In or Out

2009-06-11T14:09:00.004-05:00

In or Out

Kylee's old neurologist nurse called on Monday and said that there is a recall on her port (a device planted under the skin of her chest so that they can get blood on the first poke) and she has to get it taken out as soon as possible. Immediately I had flash backs to the last time she got put to sleep and how she ended up in ICU and we didn't think she was going to make it. They wanted done at St. Vincent's which is not our normal hospital to have things done at. I said I was very uneasy about that and needed to talk to Kylee's team of doctors. I was on the phone to Milwaukee before I even told Jason. The next day I called the doctors office to find out more about the recall as I failed to ask why it was being recalled. They said it wasn't recalled that they are just having problems removing them after they have been in for a while. I again called Milwaukee with this information. It was agreed it should come out and that St Vincent's was not the place for her and that is should be done at Children's in Milwaukee. I called St Vincents and cancelled the surgery. Shortly after I cancelled I got a call from the old neurologist again stating there isn't a recall and they only had problems removing it in 2 patients. One it had been in for 8 years and crumbled as they were taking it out and the other one was in for a few years and had a growth around it. So they said she probably doesn't need it out. I almost felt like they were thinking if you aren't going to have it done here with us then she doesn't really need it out. So at this time we have the surgery planned for July 8th and 9th at Children's in Milwaukee but after Kylee's team of doctors talk it may be cancelled for now. Everyone is just very uneasy about putting her to sleep at this time.

Vacation

On a much happier note vacation went great. All 3 of the kids loved the waterpark. Kylee did great the first day. There was hardly anyone there and she loved being in the water. Her and I were laying on a tube on the lazy river and I couldn't get out of the way for the water squiter and we got all wet. At first she didn't know what to do but when it was all done she turned and looked and me and started laughing it. It was a very nice time together and went to quickly.

Feeding

Mom is once again playing Dr. I do that often. I have decided to start feeding Kylee is her stomach again to see how she does. Before she got her GJ tube she was throwing up everything we put in her stomach. So I started about a week ago and she gets fed an ounce and a half in her stomach and has not thrown up at all. I am now going to increase that to 2 ounces. My goal is to be able to give her a few bolus feeds (6oz of milk in an hour) into her stomach 2-3 times a day and then do the rest thru the night at a slower rate into the j-tube (the part that skips the stomach and goes right to the intestines). That way she doesn't have to be hooked up to a cord 22 hours a day. She has also started to eat a little more orally. My goal for that is to get her to eat enough that we could do the sprinkles of the depakote vs the liquid so she doesn't have to gag and dry heave every time we give her the liquid. She does not get any of her medicine thru the mouth it all goes into the j tube but there is something about that depakote that makes her want to throw up everytime. So eating has been going pretty good until she started teething now she doesn't want you near her mouth. On Monday when we had speech we were feeding her and she just didn't want to eat. I signed all done to her and she got the biggest smile on her face and started laughing like finally mom you got it.....I don't want to eat.

Kylee's Room

We got Kylee's room done over vacation. We painted it all pink and she has chocolate brown castles and crown above her window and closet and a chocolate brown letter saying that says it is not easy being a princess. It turned out cute. I want to say thank you to Danelle (my niece) for helping me paint the room (one of my least favorite thing to do) and thank you to Shelia Wilson for the princess crown lamp and the Monkey Joe tickets for the boys. It was very thoughtful of you. I will try to post pictures of vacation and Kylee's room soon.

Poem

Kylee's nurse brought us a poem that she had gotten from another family that she works for. I thought I would share.......

This child is someone special,

this child is something rare.

this child is far from perfect,

for this world is far from fair.

but this child is here and with us,

and this child will share our home.

for this child is not unloved,

and this child is not alone.

This child will know its father,

and this child will know his fears.

this child will knowher mother,

and this child will know her tears.

this child may never run

or walk all on her own.

but this child is not unloved,

and this child is not alone.

this child will go easy,

into day or into night.

and we can stop her falling,

and we can give her light.

her family gives protection,

and each member does their part.

this family stands together,

though there's aching in their hearts.

this child is here and with us,

and this child will share our home.

oh, this child is not unloved,

this child is not alone.

Pictures

2009-05-29T13:55:00.008-05:00

It has been a while since I have posted pictures so I thought I would share. Kylee has gotten so big. We took her in yesterday to try on her new glasses and they are too small. They are odering the largest size they can in the glasses that go around the ear. She just has big cheeks and some meat on her bones. When we took her to the ER last week she weighed 24 pounds. Pretty soon they will tell me I can only put Slimfast in her tube :)

Kylee and Grandma Janice at Easter

Kylee working hard in her stander. Always has those fingers in her mouth.

I have been trying to catch Kylee smiling but she always seems to know when I am trying so here is a partial smile and her "new" hair cut that has already grown out.

Here is Kylee at a wedding we went to on Saturday. She did such a great job. Usually she falls asleep in large crowds and she stayed awake the whole time and my cousin Paula asked her if she had a pretty necklace on and she touched her necklace.

Then I had to put one of big brother in here after his big fishing trip this past weekend. We even had to keep them in our freezer. No one has the heart to tell him we can't eat them.

Ear Issues

We continue to have ear issues. She either has drainage or blood coming out of each of her ears. If it isn't one then it is the other. I think we are going to have to make an appointment to see the ENT again and get the tubes checked out and hopefully we don't have to do an antibiotic. Even with all the ear issues going on she is still just a happy little girl. We are having so much fun with her. She laughs and smiles all the time. She watched Strawberry Shortcake with the nurse the other day and loved it (which if anyone knows someone that has a junk laptop either free or cheap we would love it....all we want it for is to play movies on because the screen is larger and we can put it on Kylee's tray of her wheelchair). She has also been watching her signing DVD's and really likes those also. It does take her mind about 6-9 seconds to process everything and now that we know that we are noticing it alot more. When we play peek a boo or where is Kylee we always have to remind our selves to give her that time to process.

Vacation

I am on vacation next week so my niece Danelle and I are giving Kylee a princess room make over. We are doing her room in Pink and Brown Princess. I will have to post pictures when it is done. Nothing but the best for our princess. On Thursday we are going to a hotel with a waterpark and Collin can't wait for that. We are also brining Kylee's new bath chair along to give it a try. So should be lots of fun and I will try to post pictures also.

Have a good week.

A Learning Experiance

2009-05-23T14:42:00.003-05:00

GJ Tube and Medicine

Please forgive me if this is long....We had a rough couple of days. It all started on Thursday. I was very excited to be having a nurse come out on Thursday night and was going to run errands in town. I stopped at Walgreens to pick up Kylee's medicine and was told I had to pay $40 for each one of her seizure meds. The first lady told me because we didn't get a pre-auth on them and the other one told me because Kylee's state insurance (she has state insurance as secondary because she is disabled) doesn't cover brand name medicine. Our new neurologist (speaking of neurologist our old one sent us a letter saying he is taking a year off to further his education in pediatric neurology...to bad he used my daughter as a genie pig...no hard feelings) only deals with name brand medicine and there is a huge story behind that. Well I was very upset about that as it will cost us $120 a month for just her seizure meds. Then later that night Kylee's GJ tube came out. That was no big deal. I put in a new G tube and was going to make an appointment in the morning to get a new GJ tube put in. Then I got thinking and because she can not be fed into her stomach she would not be able to eat or take medicine until we were able to get the new GJ tube in. I thought I better call the Thedacare nurse on call to make sure that would be all right. I called and she said that she needed to be taken into the ER to have a new one put in or an IV started because she couldn't go that long with out eating. So this was around 9:30 at night. Jason was working and I had to call my sister to come stay with the boys...Well my sister stayed with the boys and my niece Danelle rode with me to the ER because we had to go to Neenah (about 45 minutes from where we live) because that is were our Dr had sent standing orders to have the GJ tube placed or so I thought. We get to the ER the Dr tells me there is nothing they can do for us. No one was there to place to tube and they did not have standing orders. That we were to go home and call our Dr in the morning. I was MAD. First off this Dr knows nothing about my daughter. He asked me what her diagnosis was and said well can you give me one I know (he didn't know non compaction cardiomyopathy, 1P36, dysautonomia but he knew c-diff). She doesn't show "normal" signs of dehydration because of the dysautonomia. He did nothing but look at her. Well I took her home called our pediatrician in the morning which is a issue in itself. I was told 2 months ago that orders were sent to Thedaclark. They asked what size tube she had and I was told they would always have one on hand for her. What a crock that was. No orders and no tube. Our pediatrician called our GI Dr who is in Milwaukee and we got a phone call at9:20 in the morning saying we had to be to Milwaukee at 11:30 to get the tube placed and that was the only opening they had. We live 2 hours from Milwaukee. Needless to say I put a t-shirt on and some jeans and we all piled in the car, drove way to fast to get to Milwaukee only to find out they were running almost an hour behind. When Kylee finally got in the nurse told be it would take 15 minutes to place it and it only took about 5 minutes. So we spent 4 hours on the road for a 5 minute procedure. At least it is placed and I learned alot from it. I am having the Dr send orders over so I can get a GJ tube to keep at home so that the hospital can't say they don't have one for her. I had a long talk with our special needs coordinator at Children's and I decided to skip Thedacare when it comes to important questions about Kylee and I will call the nurse or Dr on call at Children's for the special needs clinic. I found out that the state does cover name brand medicine but that the pharmacy has to take a few extra steps and our coordinator is going to call them about that. I am so happy to be part of the special needs clinic. I would be lost without them. They help me figure things out when I can't do it on my own. So with all that being said it was a rough couple of days and am happy the weekend is here. Hope everyone enjoys the long weekend.

Bloody Ear and Growth Spurt

2009-05-16T18:22:00.003-05:00

Ear

Kylee woke up this morning with dried blood all over her ear. I cleaned it up and took a look in it and all I could see was blood bubbling in her year. I called the doctor office and they said they would squeeze us in at the end of the day (noon). So we took her in but the doctor said there was so much blood in there that he couldn't see anything. He wanted to give her an antibiotic but because of her C-diff I said I didn't really want to do that and once he found that out he didn't want to either. We are going to try some ear drops until Monday and if it is not better then they will give her an antibiotic. She is extra sleepy but other then that she seems to be fine. The first word out of Collin's mouth when he saw the blood was mom are you going to have to spend the night at the hospital? Poor kid.

DME and Growth Spurt

Kylee has had a huge growth spurt and doesn't fit into most of her equipment anymore. So our DME guy is coming out on Monday to adjust her for her kid kart and her stander and then to check to make sure her AFO's for her ankles still fit correctly also. We are also going to talk about a new car seat for her. I didn't realize how much she has grown until I went to put her in her kid kart and her legs where hanging over the foot rest and then on Mother's day I was carrying her and her foot hit my knee and I was like holly cow she has grown. She is in a 3T for shirts and one piece outfits and a 2T for pants (they are way to big around the waist but fit great for length). I'm sure her growth spurt has a lot to do with the fact that she is getting her full feeds and is no longer throwing any of them up and she is also eating orally alot better. Some days she eats a whole jar of stage 1 baby food which for her is a lot. My goal is to get her to eat enough orally that we can give her sprinkle Depakote so she doesn't have to gag when we give her the liquid (that is one of the side affects of it).

Melatonin

We have given Kylee melatonin the last few nights an hour before bed. It seems to be working well for her but we will have to keep giving it to her and see what happens. We just give her a half of a tablet dissolved in water so that we can give it in her gj tube.

Enjoying Every Day

Kylee has just been so much fun. I can't express that enough. It is like every day she does something new and exciting. She is just so bright eyed and happy. Friday I came upstairs from working and I said where is my baby girl she turned her head looked right at me and smiled. It may seem small but to me that is huge. I couldn't have been happier. I love hearing her in the morning in her bed just laughing away. Everytime I give her a kiss she gives me that toothy smile and laughs. It just seems like I have waited so long to see her do all this that I just can't get enough of it. We have been stretching her on a ball and she can move her arms over head so much easier and she moves her arms out away from her body more. Again small but huge for us. Today her and I went to Walmart in Appleton (one of the few store that have the carts with the baby carriers on them...that is the only way I can take her shopping) after her appointment and it was so nice. It was just the 2 of us and she had these big eyes looking and me and the biggest smile on her face almost the whole time. So many people stopped and said oh she is so cute and one said oh what a adorable princess and I thought see Kylee everyone knows you are a princess. There were two ladies that were whispering and then the one tilted her head towards us and the other one looked....people like that I try to ignore. It is just ignorance. My live has been blessed with a beautiful girl and I am proud to be her mom :)

Equipment

2009-05-08T15:57:00.002-05:00

Equipment

Kylee got approved for family support again this year so we are thinking about different things Kylee is needing that our insurance won't pay for. She was in need of a bath chair as she has outgrown her baby tub and we were able to get that approved thru her state insurance. We were very excited about that. We are also looking at getting Kylee a new car seat. Keegan is going to be using hers so we want to get her a new one. We have been asking around about a good one. Our therapy people have suggested 2 different ones and they are very expensive. Around the $1000 range. They said as long as we are getting one we should get one that will grow with her. One of the directors of something another for the county came out last week with one of our B-3 therapist and said that he use to be the director of the CP center. He gave me a name and number of someone to call there to have them help us with getting a good car seat and getting one paid for. I was very happy about that. We are also looking at a video monitor, a portable ramp, a new pair of glasses, some touch toys. All things we are very excited about.

School

I got to talk with a parent who lives very close to us that has a child with special needs who goes to the same school Kylee will be going to. She said that everyone is wonderful which made me so happy to hear. Sometimes things be too good to be true and I was worried that is how school would be. Everyone seemed so wonderful but would it stay that way. Collin has a friend Ian whose mom is a teacher at the school Kylee will be going to and she said that they are wonderful and that the kids are very accepting of the children with special needs and always want to help them out. That also made me very happy to hear. I always say kids can be mean but it sounds like at least during the elementary years they are very accepting. I keep joking that I am going to put a sign on her wheel chair that says fragile do not touch. I love having other kids interact with Kylee but not during cold and flu season months. It is going to be hard to let her go next year but something I have to do.

Rolling

Kylee has began to roll again. We are so excited. She has been rolling for a long time but once she got her GJ tube she stopped so we were a little concerned. She rolls all over the place, gets all wrapped up in the tubing and tips the IV stand over. We have to watch her a little closer now with all the tubing but happy that she is on the move more. Keegan has also began to crawl so there is never a dull moment. The kids are always on the move.

It's Back

Kylee's #2 diapers have returned. We had a really nice break and got her hinder all cleared up and then it was back. We have taken a sample in to get it tested for everything you could possibly think of. So we are waiting on the results for that which I have the feeling they will all come back fine because that would be too easy. We are also back to trying to find something to clear up the diaper rash. We have tried everything. Nothing works.

Nursing

We now have nursing 5 days a week during the day and now we have a nurse one night a week. She is going to come out on Wednesday or Thursday from 3 pm to 9 pm. I can't wait. It will be so nice to be able to go out for supper and some drinks (some nights I feel like I need lots of them) with friends once in a while (I can get anyone to watch the boys but Kylee is limited) or to do activities with all 3 kids like going swimming or going to the park. There are alot of things I would like to do with them but with Jason working nights I don't always have the option. I am so excited about this. One of our other nurses also offered to take Kylee overnight some time if Jason and I wanted to get away for a night. We wouldn't know what to do.....I know sleep....sleep is rare in this house. One night I got a whole night sleep and I woke up sick in the morning. My body didn't know how to handle it. Between Keegan teething and Kylee not sleeping or her feeding pump going off a full night sleep never happens. All part of being a mom :)

Happy Mothers Day To All The Mom's. Enjoy!!!

School

2009-04-30T19:32:00.002-05:00

School

Jason and I went on Tuesday to visit Kylee's classroom and get an idea of how a day will go for Kylee once she starts school. Everyone was so wonderful. Her teacher is very young. I think she must be fresh out of college and seems to have lots of energy and really loves what she does. They let me know how they would adapt different things for Kylee so she can be part of the class such as putting her in a tumble form chair ( a special chair that offers lots of support) when they do story time. This way she can be on the floor with the other kids. We got to see a little boy in gym who has similar needs to Kylee and see how they adapt gym for him. The kids were riding on little scooters and this little boys aid was on the scooter holding the little boy so he could be part of gym class like all the other kids. I was just very happy with everything I saw. We have decided since it is so close to the end of the year that we will start with the paperwork in September and then have Kylee start school towards the end of September or early October.

Sign Language

I took a sign language class on Wednesday and I feel like it was set up just for me. They taught us how to sign You are My Sunshine which is our favorite song. They also taught us how to sign the book Brown Bear Brown Bear What Do You See which is a book that her therapy people made especially for her. They mad the print larger and made it into a touch and feel book. So with that being said I loved the class. It was well worth the time. I'm far from being a pro but I got a good base to start with.

Song

One of the parents on our 1P36 support group forwarded a song written by Collin Raye about his grand-daughter. I can't stop listening to the song and it gives me goose bumps every time I listen to it. I thought I would share it with you. http://www.mandjshow.com/videos/country-star-collin-raye/. Get the tissues ready.

The Week

Other then that nothing to new or exciting to report for the week. Kylee has an ear infection but she has tubes in her ears so it is just got yucky stuff coming out and when I look in them I can see liquid just bubbling (I like to play doctor). I can't go to the Dr anymore and have them listen to my lungs with out laughing a little because I always practice taking Collins blood pressure and listening to his lungs and I will say take a deep breathe and then when I am done listening to him then he listens to me and I can't help but laugh and he always says well my mom is a doctor....boy will he be disappointment when he gets older and realizes I'm not a doctor and he was my guinie pig. Ok..so back to the week. Ear infection and sleeping issues. She has been up all night. I have no idea when she sleeps. I put her to bed at 9:00 awake. When I get up at midnight to put milk in her bag she is awake. When Jason gets home from work she is awake. When I get up at 4:00 to feed Keegan she is awake and when I get up at 6:00 for work she is awake. I think we are going to have to put her on some melatonin to help with the sleeping. So if any other 1P36 mom's are reading this and know where I can buy it at let me know otherwise I will have to give her Dr a call. We are heading up to the camper on Friday for our first time this year. It is opening weekend of trout fishing so we are heading to "fish camp". It will be interesting with 3 kids but some good family time.

Does She Know How Much I Love Her?

2009-04-24T18:39:00.002-05:00

Does She Know How Much I Love Her

This is a question I ask myself often. Will she ever know how much I love her. She never really seemed to respond to us holding her or loving her but this week things have changed. She gets the biggest smile on her face when you pick her up to hold her and once in a while she gives you a giggle. We also have been playing this little game where I give her a kiss on her cheek and she will start laughing and then turn her face and I give her a kiss on that side and we keep going back and forth. Even if she can't always express how much she loves us there should never be a doubt in our mind that she knows how much we love her. We have been enjoying this week so much with her. She is just so bright eyed and happy. Her "toothy"' smile will be engraved in my memory forever. I love putting her to bed at night and having her turn to me and give me that big "toothy" smile. It is just makes it a great way to end the day.

Neurology

Well neurology had a cancellation on Monday so we made the trip to Milwaukee (as much as I was not ready to go back there it had to be done). Grandpa Eddie came along for the ride. It makes it seem so much shorter if you have some else with you. We had an hour and a half appointment and I really learned alot from the appointment. They have decided to increase her Depakote just 1 ml at night. She thinks that will get rid of the few seizures we are seeing. She also asked what her sleep pattern was like. I said she usually goes to bed around 8:30 pm or 9:00 pm and it sometimes takes her an hour to get to sleep. Then she usually sleeps until about 2:00 am and then will stay up until about 4:00 am or 5:00 am and then will go back to sleep until around 10:00 am. She said because she is not getting a full 8 or 10 hours of sleep this can increase her seizure activity. I had never thought about that. I know we have had many conversations on the 1P36 support group about sleep and her sleep pattern is very similar to many of the other 1P36 kids. She then said if we felt she was having more seizures the day after she has broken up sleep that we may want to start her on melatonin. This is another topic we have discussed on our support group. Some families feel it helps and others do not. So right now we are just watching her and will see if we notice she has more seizures on those days. If she does we may give it a try. Other then that everyone was very happy with how well she is doing and how great she looks after everything she has been thru. I always hate making the trip to Milwaukee but it is always worth it.

School

We had a meeting with the school psycologist last Friday. Didn't really learn a whole lot from it but it was still nice to get to meet her and talk about things. Everything I would ask I would get a response of "if it is determined that Kylee" needs vision services, a nurse at school, a one on one aide....everything was if it is determined. Guess I just need to be more patient with getting my questions answered and taking one step at a time. Now on Tuesday I will be going to the school and sitting in on a class and see how things work. She said there is no one in the class right now that has as many "needs" as Kylee and no one with a Kid Kart or wheel chair so the classroom is set up a little different but at least I will get the idea of how the class runs. They are also moving the early childhood class room to the senior high school next year instead of at Lincoln due to the fact they are running out of room at Lincoln. She said the early childhood kids will have no interaction with the teenagers other then kids that may sit in on a class or help out because they are interested in going to school for a field related to the early childhood class. I also got a name of a family that lives about 1/2 a mile from where we live who has a child that just moved into kindergarten but has many similar needs as Kylee as far as vision and mobility. I am going to be contacting them to see if they can answer some of my questions about school.

Sign Language

On Wednesday the La Leche group (I think that is what they are called) is offering a free sign language class for 2 hours. You are suppose to learn 75 signs. I figured I would give it a try. I have all kinds of things at home to help with learning sign language but thought if I could see someone do it maybe I would catch on a little better. I also thought maybe I would be able to meet up with other families in the area who may have children that are hearing impaired or have difficulty with speech.

Appointments and More Appointments

2009-04-15T13:04:00.004-05:00

GI Appointment

We had Kylee's GI appointment on Friday and it went very well. She has gained 2 pounds since she has been discharged from the hospital in March. All her tests for C-diff, parasites and rotavirus came back negative so that left the doctor wondering what is causing this major case of diarrhea. So he decided he wanted to run some more test and check for a lactose intolerance and protein intolerance along with some other things. I asked him about reducing her to a 22 or 20 hour feed and giving her tummy a break and then increasing the amount she gets during those hours so she is sure to get enough "food". He didn't think that was a good idea because he thought that would increase her diarrhea. Well....on Saturday morning her machine went off nice and early to let me know she was out of milk. I got a new bag of milk and set in on the dresser and decided to go to the bathroom. When I came out I forgot what I had been doing and went right back to bed. She ended up having about a 2 hour time span with no food. All day Saturday she had 2 diapers. So I thought hmm...that seemed to work good so I have tried it for a few days now and it has been working great. Each day she has only had 1 or 2 diapers (#2 diapers) and I have been giving her some pedialyte to make up for the milk she is not getting during the span. So with all that being said I playing Dr right now and adjusting her rate so we can increase her milk she gets in that 22 hours and continuing to give her that 2 hour break. If it works that is all that matters. Then I will just call GI and tell him I have it all figured out. That is what I like about her GI is he trust me and lets me run the show :) We also got the OK to give Kylee food by mouth again so we are slowly introducing that to her. She had a few days that I have never seen her eat so well and then other days where she didn't want to open her mouth at all. Just have to keep trying.

Cardiology

We saw cardiology today and that went really well. We do not need to come back until September unless we have issues. She said our issues would be her hands and feet turning cold and blue, puffy face and respiratory issues. She said those would all be signs her heart is not functioning properly. All those signs were things we saw when she was hospitalized in February just didn't know what they meant. She also told me that with non-compaction cardiomyopathy she could go into heart failure. She said it could be today, tomorrow or 40 years from now. She said if that happens she will have to send us to a different cardiologist in Milwaukee who handles that situation more then she does. Kylee has also had a very dry barky cough for about a month and she thinks it may be from her heart medication so they are switching her to something else. They also gave us a website to go to so we can check any medicine we give her to make sure it is not something we shouldn't be giving her because of her heart condition. She told us her cardiac output is 60% which is good. Overall a very good appointment. They also said she is still not on the growth chart. I was hoping with that 2 pound weight gain she would be at least one or two percent. Oh well...as long as she is healthy.

Neurology

So...Milwaukee called and said Kylee's neurologist has no openings until December 2009. Crazy. I can't believe she is booking out almost a whole year but I guess thats what happens when you find a good Dr. They said they would put us on a list for cancellations (not sure why anyone would cancel when they book out that far). They called last week and said they can get us in on Monday April 20th so as much as I don't want to go back to Milwaukee right now I know we have to. So we will be making the trip on Monday. She has been having a few seizures a day but they are so small and last only seconds. She mainly just curls her fingers up or puts her arms straight out. Something that you wouldn't know was a seizure unless someone pointed it out to you. She has been such a different girls since being on the medicine for her seizures that I continue to hope that it works. Therapy is so happy with how well she is doing considering the rough couple of months she has had. At least we know what our options are if the medicine doesn't work and our next step would be a special diet for her. Our last option is surgery.

Nursing

Well our nursing information has come back from the state and Kylee has been approved for nursing care until April 2010. That is a whole year. We are so excited about it because this is the first time she has been approved for a whole year and we didn't have to fight them on it. EXCITING!!!! So we should have our 2 new nurses starting soon and one of them said she would do 1 night a week which will be nice so that the 2 boys and I can get some time to do things together that Kylee's can't do or doesn't enjoy doing.

School

Well Friday is our big appointment with the school psychologist. I have a huge list of questions and reasons why Kylee should have a one on one aide and/or nursing care during school. I've been told to come prepared but not defensive. That New London school district usually works very well with parents but that I need to know Kylee's rights. It all sounds like a scary process but something that has to be done.

GI Issues

2009-04-05T17:19:00.004-05:00

I have yet again spent another Friday on the phone with GI. The nurse said oh I missed you. I guess at least we can have a sense of humor about it. On Thursday Kylee had a total of 12 #2 diapers which means her poor hinder is worse then ever. They decided to do some more test on her for the c-diff again, parasites and rota virus. Then we have an appointment on Friday to discuss everything. Our GI Dr is a Children's Hospital Dr but he comes to Green Bay (about 45 minutes for where we live) so that saves us a 2 hour drive. I'm not sure what his plans are if all those test came back negative. I was hoping on Friday we would be able to start to increase her feeds so that she could get a 4 hour a day break but I don't think that will be happening as long as the #2 diapers continue. I am trying a new homemade cream on her. It is made of Benadryl, Malox, zinc oxide (which if anyone knows where I can buy pure zinc oxide let me know the closest I can get is desitin) and then Aveno oatmeal bath. You mix it all together and make a paste and put it on. I am to the point I will try just about anything. With all the diapers we are very concerned about dehydration so we are working on keeping her hydrated and not focusing on the calories so much right now. Anything to stay out of the hospital

School

Well we are starting the process of getting Kylee ready for school. We have a lot of work to get done before the end of the school year as Kylee will be starting school in September. Our first step is meeting with the school physcologist and we will be doing that on the 17th. The school has decided to let you start early as she does not turn 3 until December and we decided to go ahead with it because we think it may take Kylee a while to adjust and not shut down (fall asleep) during school. She will also see therapist at school and we will also get to stay with B-3 until she turns 3 so I am hoping to make lots of progress during that time. My only worry is all the germs but I guess if she starts in September it will slowly introduce her to germs before the big cold and flu season hits.

The Week Ahead

So the week ahead is Speech on Monday. A new nurse on Tuesday. Our service coordinator on Wednesday. GI on Friday and a wedding on Saturday and then the Easter Bunny. Busy week as always. I will be sure to post after her GI appointment. Can't wait to see how much she weighs.

Our Artist

2009-04-01T17:55:00.014-05:00

Our Artist

Kylee has been feeling really good lately so we have been doing lots of fun things. We colored with crayons over the weekend and then today Kylee and our nurse painted. Just had to post a few pictures to share.

Here is Collin and Kylee coloring together. What a nice big brother.

Here is Kylee and our nurse Marsha getting ready to paint.

Here is Kylee painting she held onto the paint brush all by herself.

Here is another picture of her painting.

Here is the final project. So cute for her first picture.

Here is a picture of the little room. It is side ways but you get the point. She lays on the piece of wood with all these "items" hanging above her. You never change anything in the little room. This way she always knows where everything is. Then there are rules like she can't stay in for more then 45 minutes/you have to take her shoes off and she can't get upset or fall asleep in there. It will be interesting to see how she does in there. I am happy we got to try it out.

Loss of Emma

I was very saddened to read that we have lost yet another 1P36 family member. Emma died during her sleep and my prayers and support go out to her family. This bring up a whole bunch of emotions that I have had to deal with lately. I have always said that I don't know how families can be so strong during such a difficult time. Then this past winter when Kylee was so sick I realized how God gives you the strength when you need it. When we were given the news that she was being transferred to ICU I realized how bad she was then they asked me if we wanted her resuscitated if something were to happen on the ride to Milwaukee. Then I really realized how bad things were. Reality then set in and God gave me the strength to hold my baby girl and tell her that if she was tired of fighting it was ok as I sang her favorite song you are my sunshine. Ever since that time I have thought a lot about death and dying and what would I do if I would wake up one morning and go in by her and she would be gone. How would I keep myself together for the boys. Then I seen the e-mail about Emma and it brought all these emotions back again. It just makes me realize how I do need to enjoy each moment..not think about tomorrow and worry about it when and if it happens.

Please keep Emma's family in your prayers and may God give them the strength to get thru this difficult time.

C-Diff Again?

2009-03-27T20:09:00.002-05:00

C-Diff

Well we had to have Kylee tested for C-diff (the bad bacteria that took over in her gut from all the antibiotics) again this week. We were just doing our 2 week follow-up to make sure it was gone. We were sure it was going to come back positive because she has had horrible diarrhea for weeks and the worst looking bottom you have ever seen. Well....the test came back....negative. No way. I told her pediatrician I can't believe it came back negative. It looks and smells like c-diff. She told me to call GI because she ran out of ideas to use on her bottom and to stop the diarrhea. I pretty much spent my whole Friday on the phone with GI. They first thought they wanted to try a new cream for her bottom which of course no one around here has and they have to order it and can't get it until Monday or Tuesday. Then they decided to switch her milk from Peptamin Jr to Peptamin Jr with fiber....I know I said fiber... when she is going to the bathroom 4-5 times a day. I guess they figure because she is getting a slow drip all day that the fiber will bulk it up instead of making it looser. It won't stop the # of diapers but at least make it thicker. They also couldn't find anyone that has the Peptamin Jr with fiber and we have to wait until later next week for that also. Then they called back and decided that they think she may still have C-diff and that it is very difficult to get a positive sample when the stool is so loose. I said I totally agree because I feel like it looks and smells like C-diff. So they decided to put her on Vacomyician instead of Flagil as the Flagil didn't work last time. Well wouldn't you know it...no one carries Vacomyician. Walgreens told me they only have a tablet or injectible. Well the nurse called around and said Thedaclark could make us up some to last us until Monday and then Walgreens will order the liquid for us on Monday. So...hopefully we can get rid of the #2 diapers and the bad diaper rash.

"Little Room"

Well we got our little room this week for Kylee. What can I say about it......so not worth $2800. When they brought it out I told Jason to help her carry it in and she said this is all of it. I couldn't believe this little box with a bunch of "junk" hanging from it is worth $2800. The "junk" is a tin can with string hanging from it, a sewing hoop with Kylee's lovey hanging from it, a flower necklace, bells hanging from a string and a ponytail holder with material on it. It is really hard to describe so I am going to try to post some pictures later so you can see what it looks like. It is just crazy how much money people charge for items just because it is for a child with special needs. The rest of therapy went really well this week. None of them have seen her for weeks. Maybe even a month or more. So they were not sure what to expect. They all thought she looked really well and was very active so I was happy to hear that. It shouldn't take her too long to get back all her skills she lost being sick.

Nurses

Well it sounds like we have most of the paperwork done for the new nurses and to get our regular nurses recertified. Our regular nurses are approved until April 30th. They have to get reapproved every few months by the state. Basically they just check to make sure that she still requires nursing care. I can't wait to get our new nurses. It will be nice to get out once in a while. One of the nurses is going to do one night a week and the other one is going to be our on-call night and weekend nurse if we need someone. I went out Wednesday with Kelly Kling for supper and a few drinks and it was so nice (Thank you Kelly). It was well over due...it is just nice to get out and have some adult conversation once in a while. We also have a wedding coming up in a few weeks for Jason's cousin and Kylee is going to stay home with our nurse Marsha and Keegan is going to my parents and Collin is coming with to the wedding. So excited about that also. Hopefully things are starting to settle down and we can get back into a "normal" routine. I love routine :)

Weight Gain

2009-03-20T20:16:00.002-05:00

Weight Check

Today was Kylee's first day out and about since being home from the hospital last week (big trip...we went to the Dr and Walmart). We took Kylee for her one week follow up with our pediatrician and she gained about a pound. I was really surprised. I didn't figure she would gain much of anything yet. I figured it would take some time for her body to get back on track before she would start gaining. Our pediatrician thinks the diarrhea she is having is more from the GJ tube then from the c-diff however she said not to be surprised if she does get the c-diff back again as there is about a 30% chance that she will. I guess once you get it you are more likely to get it again and they try not to give you antibiotics unless you really really need them. So with her having so much diarrhea she has a really sore bottom. They made up some medication for her that is a mixture of several different things. I know part of it is a cholesterol medicine but can't remember what the other 3 are. They mix it all up and you spread on. It is suppose to be really good so hopefully it will clear it up. It hurts her so bad that when you change her diaper she lifts her butt up and cries. I said about the only good thing about it is that she is giving her legs a work out which normally she doesn't put any pressure on her legs. We also found out that we can go to ThedaClark to have her GJ tube replaced if she pulls it out or when we need to replace it every 3 months. With her G tube I could change them out myself at home but with the GJ tube she has to have it done in radiology so that they can make sure it is down far enough in the intestine and placed properly. So that saves us a two hour trip to Milwaukee for about a 5 minute procedure.

Bath Chair

Our DME guy came out on Monday and fitted Kylee for a bath chair. I am very excited about it. It stands about 1 inch high so she can get down in the tub and soak in the water. It does come with a base that makes it stand out of the water but I don't for see we will use that any time soon. It is very portable. It folds up like a lawn chair so that we can take it to the beach and to a toddler pool. I think we will get a lot of use out of this. It offers great support around the head and chest which is what she needs right now. You can also lay the back of it flat or at all different angles. He said that the state has been paying for most of them that he has sent thru this year. He said he is sure our primary insurance United Healthcare will deny it but he said he would give it a try. They say it is not a necessity. So hopefully one of them will cover it. If not we have become eligible again for our family support money...which completely surprised us. They told us not to expect again for a couple of years.

Therapy

We took the week off of therapy this week so Kylee could get back on her feet. We are starting back up on Monday. She will be getting Speech and OT this week and then our service cordinator is also coming out. She is bringing out something called a little room. It is a box about the size of a kitchen table. There are many different items hanging from the top of it. You put Kylee on a board that has wheels and you slide it underneath it and then you can't talk to her the whole time she is in it. You just watch to see if she goes for certain toy all the time. If she does then you move the toy to see if she goes to the new place you moved the toy or if she still goes to the same place the toy was. This will teach if she likes something if she will explore to find it or if she goes to the same place because that is where she can see the best. She is considered to be legally blind however she can see some with her glasses we are just unsure how much she can see. This little room is a very expensive item. It is about $3000.00 and we are loaning it from the state. It also provides great sensory input.

We also have been practicing sitting the last 2 days and she is doing pretty good. I don't think it will take her long to regain her strength and skills that she lost when she was sick. She is already rolling all over the floor and Jason and I are chasing after her with the IV stand so she doesn't pull the feeding tube out. I will be so happy when we can reduce her feeds from 24 hours a day to 20 hours a day.

New Girl

2009-03-15T16:10:00.003-05:00

Well we have been home for a few days and things are really going good. Were falling into the routine of being fed 24 hours a day pretty good. Not as hard as I thought it would be. Our biggest adjustment is that we brought home a new girl. She has a personality like she has never had before. She cries real tears which we didn't even know she could. She usually cries when she is tired or when her and Keegan are having crying competitions to see who can cry louder. She also has moments of being very happy and smiling and laughing and just full of life. She also likes to just sit and "talk" and she "talks" loud but with 2 boys in the house that also like to talk I guess she has to talk loud or no one would hear her. We are thinking the new personality is coming from the fact that she is getting all her seizure meds. With throwing up all the time she was only getting some of the medicine and not the full affect. We are trying to video tape her so others can see how well she is doing but whenever we turn the camera on she stops. Stinker. So all and all things are going really well. Just happy to have us all together.
We have kind of a busy week this week. Monday our DME guy is coming out to fit her for a bath seat. We want to get one that she will be able to sit in the actual tub because she loves the water. She is just getting to long for the baby bath tub. On Friday we have to take her for her check up because it will be a week that she has been out of the hospital. Can't wait to see how much weight she has gained. Thursday I am going to Monkey Joe's with Collin's pre-school class. Can't wait for that. It should be alot of fun and then one day this week we really need to get Keegan in for his 6 month pictures. He will probably be the oldest "6 month old" on Grandma Janice's wall. I also need to fit work into the schedule somewhere :) Life has just been so busy.
Thank you once again for all the support and kind words. Jason and I always enjoy reading them.

Kylee's Coming Home

2009-03-12T11:50:00.002-05:00

I know everyone has been waiting for this. YES Kylee is coming home today. They should be on there way home in about an hour. My dad and Jason went down to get Kylee and Grandma. I stayed home to try and get some work hours in however I have to the two boys so I am going to have to wait until nap time (well nap time for Keegan...Collin is a school boy and naps are rare).
She is coming home with the GJ tube and will need to be fed 24 hours a day. No word on when we can change that but hopefully it will only take a few months to change her to 20 hours a day. I'm excited to once again be all together and hopefully this time it is for a much longer time. I don't want to see another hospital room or cafeteria food for a very long time. I am very nervous about the GJ tube but I am sure I will get use to it just like I did with the NJ tube and the G tube. It is just new and takes time.

GJ Tube Placed

2009-03-10T17:40:00.004-05:00

Kylee had her GJ tube placed today at 4:00. They weren't planning on placing it until tomorrow or Thursday but for whatever reason they got her in today. So the nurse called and said she is doing great and they are going to talk to the Dr about how to start her feeds. My mom is with her right now and she said it doesn't look any different then the g tube she had. They were unsure if they were going to be able to leave it like the mickey G-tube (just a little button on the outside of her belly) or if they were going to have to have it look like her "peg g-tube" she had before the mickey (a little tube that stick out of her belly a few inches). The cut off is 20 pounds and she is around that mark. So we are very happy they were able to leave it looking like the mickey.
She hasn't had any #2 diapers today and has only thrown up once and it was more bile and phylum then anything.
They also started her on something called Reglan (I may have spelled it wrong) yesterday to help empty the stomach. I went onto my feeding tube support group and say a FDA warning about this medication. My mom talked to the Dr about what I had found and they took her off it right away. I'm so happy I saw that. The side affects are involuntary muscle movement and they don't usually stop after the medicine is stopped. We don't need anything else.
So if things keep going well then she will be home in a few days.

NJ Tube

2009-03-07T11:56:00.004-06:00

Yesterday Kylee could not keep anything down. If it wasn't coming out one end it was coming out the other. They ended up having to stop feeding her and put her back on the IV. They decided today to take her down and place a NJ tube (a tube that goes down her nose into her intestine and skips the stomach into the jejunum). They had been thinking about placing a GJ tube because she already has a G tube but by doing the NJ first it is like doing a test run to see if it will work before going to the GJ tube. The difference with the GJ vs the G is that she can not get a feeding every couple of hours. She has to get one straight feed. They say they usually run between 16 and 20 hours a day. I have been trying to stay away from the GJ tube so I am happy they are going to try it out with the NJ first. I would be so upset if they would do the GJ and it didn't work. They are also going to weigh her today. I think she probably has lost a good couple of pounds (I'm totally guessing here...she is nothing but skin and bones) so it is very important to get some calories into her. With all this being said we will not be going home anytime soon.
Thank you once again to everyone for you support. Please continue to keep Kylee in your prayers.

Test are back

2009-03-05T08:01:00.002-06:00

We got some of Kylee's test back and she has an over growth of bad bacteria in her stomach from having a low white blood cell count and then having her on so many different antibiotics. The antibiotics kill off both good and bad bacteria and sometimes the bad bacteria can come back faster then the good. When we got her home I had increased her probiotics because she was on so many antibiotics so they are thinking that is why her signs of it were not as bad as most people. When they took the test they said I really don't think she has this but leave it to Kylee to surprise them.
I also talked to them about doing some testing for the dysautonomia and they said the would discuss it and that it is usually done outpatient. I have no idea how they go about testing for it but I want to know for sure. She has so many signs of it that I just need to know. There is no way to treat it but if I know she has it then it will answer alot of my questions about why she has certain problems/issues.
As of now no word on when she will be coming home. I'm not assuming anytime before Monday but I could be wrong. They started her back up on g-tube feedings lastnight and she threw up so I don't think (at least I hope) they would send her home if she is throwing up at all.

Here we go again

2009-03-04T09:22:00.006-06:00

Back in Hospital

Well Kylee was admitted back to the hospital on Monday. Ever since we brought her home we have had issues with throwing up, diarrhea, hands and feet turning blue and cold and periods of times were we couldn't even tell if she was breathing. We put her to bed on Sunday at about 9:00 and she woke up at 8:30 for about a 1/2 hour and then went to sleep and was still sleeping at 2:00 pm. She didn't have a wet diaper all day and her feet were blue up to her ankles. I had called our pediatrician who said she thought she had the flu and to just give her clear liquids for 24 hours. Well I had contacted her the week before saying she was throwing and she told me the same thing. I had already tried all of that before I called on Monday so I decided to take her to the ER in Neenah. When they did the blood work they said she was dehydrated and gave her an IV and some glucose because her sugar was low. Well with-in minutes she perked up. They were worried the heart medication wasn't working so they decided to send her back to Children's in Milwaukee. Once we got there they said her heart looked the same and they think the medicine is working. They said she was dehydrated and they are thinking she may have dysautonomia (http://www.familialdysautonomia.org/) . I don't know much about it other then it affects the central nervous system. They are very concerned at the fact that she was so dehydrated but yet her heart rate and blood pressure were normal. They said she could get in big trouble that way because a dr could look at her and say all her stats look fine and send us home when in fact she was in much greater danger then what it appears so Children's is setting up an emergency protocol for us. I don't know exactly what it is all about but I am assuming it will be a quick response flow so we know who to call and what to do so that she can get taken care of ASAP so she doesn't get in a bad situation. This is about all I know right now. We are waiting for GI to come up to see her this morning. I will try to update again as much as possible.

Kylee Has The Giggles

2009-02-26T06:58:00.002-06:00

Stories about Kylee

Yesterday was the first that Kylee has really had any energy since coming home from the hospital and she was full of it. She had Marsha (our nurse) and I laughing so hard. She was sitting in her purple tomato chair and she would hold one arm our straight in front of her and then she would bounce her body up and down and hard as she could. It almost looked like she was riding a horse. We started laughing at her and then she would start laughing. When we would stop then she would do the "horse riding" again and we would start laughing again and then she would start laughing. It was so cute. She has just been so full of giggles. I told her we need to pack some poundage on her and she thought that was funny and laughed and laughed. Well anytime we can get a laugh our of her we keep doing it so I kept saying the word poundage over and over and she would just laugh and laugh. I LOVE IT!!!

Also Uncle Kenny stopped over yesterday and he said good-bye to her and she raised her hand real slow like she was saying good-bye to him. So she must be feeling a little better.

Nursing

Well I think we may have our nursing situation figured out. I am interviewing 2 nurses in the next week possibly 3. One is going to work out a Tuesday schedule with a nurse I had previous interviewed (Deb and Meghan). Meghan is a fairly new grad and young so I think she will have lots of energy and do lots of fun things with Kylee. She is also willing to do one night a week and weekends. Deb has been and independent nurse for a while and I think she will be a great resource. She knows a lot about the process of getting nursing approved and that kind of stuff. The other nurse I am interviewing is Wendy. She is going to be our occasional night and weekend person. She has 5 children and 1 of them has special needs so she lives the life every day. She also takes care of a 7 year old with special needs 2 nights a week. All 3 are RN's. So I am very excited to have found them. Hopefully everything works out.

We are home

2009-02-21T09:56:00.005-06:00

Well..you haven't heard from me for a few days..bet you were wondering.... Yes...we are HOME. I am so excited to have all 5 of us together again. Kylee came home on Thursday afternoon. Things have been busy since coming home as we have a whole new routine to get use to. Kylee was sent home on yet another medicine. This one is for her heart. One more medicine that we have to get up at 1am to give to her. I think most days I do it in my sleep. We have to check her oxygen level several times a day. Give her neb treatments every 6 hours.Then we also have oxygen in the home just in case we would need it. So far she has been doing pretty good but we are having some issues with throwing up. Not sure if it is a side effect to the new medicine or just that she hadn't eaten in so long that it is taking her tummy some time to get us to it. Don't have much time to write but just wanted to let everyone know we are home.

Good News

2009-02-18T09:36:00.002-06:00

Well Jason just called and said things are going great. They are taking her off the PEP treatments today and are starting her on just regular neb treatments. If that goes well then she can come home tomorrow. She will probably have to stay on the heart medication for the rest of her life and at this time there is no talk about any heart surgery. I know our regular cardiologist said she is not saying that she will never have to have one but for right now she doesn't. She was diagnosed with non-compaction cardiomyopathy. They said she never had pneumonia. They believe everything was all heart related and that her lungs were filling up with fluid. It is so funny how you can go from one hospital to another with completely different diagnosis. We had this happen to use last October also. They told us she had pneumonia at one hospital but when we got to Milwaukee they said no....so who knows. We have a diagnosis and treatment course and she is doing better so I guess that is all that matters. I can not wait to see my baby girl.....I have never had to go this long without seeing her. In a way it is kind of good because Jason is playing my normal role and I am playing his (he is in Milwaukee and I am home with the boys). Now we know what it is like to walk in each others shoes.
We are in desperate need of some nurses so if anyone who is reading this knows someone who is an independent nurse (LPN or RN however we do have a case manager...they will know what that means) please give them my number.
I would like to send a special thank you to the girls from work who brought over supper lastnight for us. It was very thoughtful. Once again I would like to thank everyone for your prayers and support. I know we have said it a million times but we can not thank you enough.

Still in the hospital

2009-02-16T16:02:00.002-06:00

Jason and I came home lastnight. It was so hard to leave her lastnight but Jason and I needed to get home to see our two boys and take care of some business at home and work. My mom and dad are staying with Kylee. Jason is leaving tomorrow morning to go back down and then my parents are coming home. I am planning on going back down on Thursday unless she gets to come home before then I will just go down for discharge so that I know what we need to do at home. I think this morning was harder on me then lastnight because we were going about a half way "normal" routine but Kylee was missing. That is when it hit me hard. Even knowing she was in the hospital and was fine it was so hard not to have her here with us.
I have been getting many updates today. They have increased her heart medicine today and she seems to be handling it fine. They just started on a low dosage to make sure her heart rate and blood pressure remained ok. She is now down to 1/2 liter of oxygen. She is still getting the PEP treatments for her lungs but they are hoping to move over to the neb treatments soon. She was moved from PICU (3rd floor) to intermediate care (4th floor). They are planning on doing another echo on her heart and a sleep study before we go home and teaching us how to deep suction her to help get the stuff out of her nose and mouth that she can't get out herself. I have heard that she has become a TV hound since I left. They have these little flat screen tv's that you can move all over the place. They bring it down over the bed right in front of her face so she can watch it. My mom said she becomes so relaxed watching it and her favorite seems to be some tinkerbell show/movie. My mom also said she makes some noises while watching it. I can't wait to see it. So overall sounds like things are getting better. Hopefully we stay on the same track.
Once again thank you to everyone for all the kind words and prayers. We know we are truly blessed with a great support system and could never thank each and every one of you enough.

Back in PICU

2009-02-15T06:52:00.002-06:00

Well we are back in the PICU. Kylee lasted about an hour on the regular floor. We are not sure what happened. She threw up and became unresponsive, blue and not breathing. One Dr said it was her heart the other Dr think it was a seizure so at this point we don't know. Guess it is a wait as see game. Not much else to report.

Yet another update

2009-02-14T10:19:00.002-06:00

Well doctors did rounds today and Kylee is doing great. It is amazing how quickly she bounces back. It was only a few days ago I was having a talk with her telling her that if she was tired of fighting that it was ok for her to give up. That mom and dad would be ok and now she is bouncing right back. Her oxygen is down to only 2 liters and she is doing great on that. They are moving her out of the PICU today as soon as they can get a room ready for her. Sounds like we should only be here for a couple of more days. They are going to only give her pep lung treatments during the day instead of 24/7 and then tomorrow give her just regular neb treatments during the day. They started her with 1/2 feeds yesterday and did great with that so now she is going to get full feeds today. They are trying to get her back on a schedule that we can manage at home.
She is a tough girl. Like I said before one minute I thought there was no way she could be strong enough to get thru this and now we are already talking about going home. AMAZING!!
Thank you again to everyone for all support and prayers. We truly are grateful to each and every one of you.

Another Update

2009-02-13T13:43:00.002-06:00

Well we are currently still in the PICU at Milwaukee however doing much better. She is much more awake now and is showing her feisty side with the staff. They took alot of stuff off her today. They stopped her heart medication, took out the foley and are trying to bring her down off the oxygen. She is from 6 liters to 4 liters and is running on the lower side for oxygen level so they may take her back up to 5. They also started a new neb treatment that just pushes the medication down in the lungs a little further. If she does good later today they may move her to intermediate care (in between PICU and a normal room) however at this time they don't have a room for her. If they don't then she will stay in the PICU because they don't want her in a regular room yet. She is also starting to cough a little on her own. I guess that is about where we are at right now. Much better then before :)

Milwaukee

2009-02-11T15:50:00.002-06:00

Just another quick update. Kylee was transfered to Milwaukee Children's Hospital lastnight around 10:30 pm. Her respiratory status was getting worse and she was beginning to show signs of modeling so they felt she needed to be transferred to the PICU. It was a late night. I don't think we got to bed until 3:00 am and then had to be out of the sleeping room by 9:00 am. She is holding steady today. She is currently on 6 liters of oxygen which is down a little from yesterday. She is also a little more alert today. She is still sleepy but at least she responds to your touch and voice where yesterday she was not doing that. They are running lots of test and checking every little thing out to try and figure what is going on with her but they are thinking pneumonia and she is just not strong enough to fight it off on her own.
Thank you to everyone for all the prayers and words of encouragement.

Update on Kylee

2009-02-10T14:58:00.002-06:00

Just thought I would post a quick update. Kylee is still in the hospital. We had kind of a rough night. She couldn't main tan her oxygen and her respiration rate was so fast. This morning they did a chest x-ray and it didn't look any better then it did on Saturday and she started running a fever again today. They put her on heated humidified oxygen in hopes that would help loosen things up. Then they also put her on a different antibiotic. The Dr said if that doesn't help they may need to transfer her to Milwaukee as Neenah does not have a pediatric ICU and she said she would rather transfer her in a non-emergency transfer then to have to send her in Thedastar helicopter. So I came home to pack some bags and get things taken care of for the 2 boys and work a little (it keeps my mind busy). Then I am going to head back up and then Jason will come home. I know I have said this a million times before but she is one tough girl. I don't know how she does it. My heart just broke for her today watching her little chest just a moving up and down so fast. I'll try to post again soon so everyone can stay updated.

Pneumonia

2009-02-08T20:49:00.002-06:00

Pneumonia

Well we are back in the hospital. Kylee came down with pneumonia. She started with a cold on Monday. On Thursday she was having problems breathing and her hands and feet kept turning a blueish color. We went and saw her pediatrician and she said everything was fine (of course by the time we got her there her breathing was normal and she was a nice pink color). On Saturday she would cough until she would throw up and just slept all day. I hooked her up to our pulse ox machine and her oxygen level was low. We decided to take her. By the time we got to the hospital her oxygen level was 85% and they had to put her on oxygen. They started checking her for RSV and influenza but as soon as they did the chest x-ray they saw the pneumonia. It is only in her right lung so they think she has aspiration pneumonia (meaning she probably got some of the vomit in her lungs). The Dr said she will probably be in the hospital until Wednesday and then after that it will probably be up to us as to when we want to bring her home. He said more then likely we are going to have to bring her home on oxygen. Right now she is on 3 liters of oxygen. Anytime they try to bring her down her stats go low and then they have to put her back up. She also is very sleepy. She probably was only awake for about 30 minutes today. Her face is also very swollen and they said that is probably from the IV. All I can say is she is one tough girl. Today I just kept looking at her thinking how much more can your little body handle. She is such a fighter.

ABR

2009-02-02T19:09:00.002-06:00

ABR RESULTS

Kylee had her ABR. As we were pulling into the parking lot of the hospital she threw up and had a stuffy nose so we thought we would be sent home. All her vitals where fine so we were able to go ahead with the ABR and MRI. We got very good news. Both ears came back with normal hearing. Her left ear has some fluid and they could not see her tube so we have to call the Dr tomorrow that placed the tubs to take her in for a tube check and possibly some ear drops. The audiologist said we don't have to come back for a year or so unless we notice something different in her hearing. She said we will be the judge of howl long we want to wait. So very excited about that. Now we just have to wait for the results of the MRI. As the nurse was walking Kylee and I out (Jason was pulling the car around so we didn't have to walk so far) the nurse said I just want to tell you what a wonderful job you and your husband do with Kylee. It is hard work taking care of a child with special needs and you don't always see parents as wonderful as you. Made me feel good. It is hard work but I just can't imagine a parent not wanting to do anything they can for there child.It just breaks my heart to think some children don't get treated well but I have seen that first hand many times during hospital stays. Kids that stay weeks and weeks in ICU with no parents.Oh...I just can't imagine. Ok...can't think about that anymore. Hopefully Kylee's cold doesn't progess into anything worse. Everyone in our house seems to be sick. I got sick while we were in the hospital 2 weeks ago. Jason got sick the weekend they came down to visit. Keegan was also sick the week Kylee was in the hospital and now Collin and Kylee are getting sick. Oh the joys of winter...Can't wait for warm weather.

We are home

2009-01-29T20:00:00.003-06:00

Back Home

Well we got home from the hospital on Monday. I have never been so happy to be home and get back to work (well I maybe could do with out that but it is a part of life) and back to a routine. Kylee has been doing really good on her new medicine. They have taken her off 2 of her old medicines and down on another one. It is amazing how much she has changed. She is much more verbal now and lets you know when she don't like something. One night this week she started crying and Collin didn't know what to do. He kept rubbing her and saying it is ok. Then he said mom I think Kylee misses dad I think he needs to come home from work. It was so cute because he just new that she doesn't usually cry and he didn't know what to do. I am hoping that this new medicine continues to work. The past week has been a roller coaster. I had to work really hard to get Kylee to Milwaukee and once we got there and got the diagnosis of Lennox Gastaut Syndrome it just broke my heart. As much as I wanted her to be at Milwaukee I just didn't want to hear those words. All I could do was cry. I felt like all my hopes and dreams for her were just crushed. I so badly just want her to be a "normal" child. I feel like with every new diagnosis she gets it pushes that hope further and further away. It is just so hard to accept it. You would think after 2 years I would have accepted that she will not be like other kids but I guess I wouldn't be a parent if I didn't have high hopes for her. Now seeing how well she is doing on the medicine part of me wants to get excited but the other part of me doesn't want to get my hopes up. I guess all I can do is take one day at a time and enjoy each minute I have with her. She is truly a blessing and I can not imagine live without her. She has taught me so much and made me a much stronger person.

Collin and Ronald McDonald House

Ok...On a much lighter note Collin got to go to the Ronald McDonald house for the first time and he just loved it. He was so excited to get to play video games for free and he got to go to the toy closet and pick out any toy he wanted. While we were there he saw some boys bring in bags and bags of pop tabs. He asked what they were for and I explained to him that they get money for those and that lets people like us be able to stay there while they have family at the hospital. So now Collin wants to start saving pop tabs so other people and us can stay there. So if anyone has any pop tabs I would be more then happy to take them off your hands. We will drop them off at the house with our next trip to Milwaukee. Sounds like we are going to have to go there every few months now that we have switched nerologists.

ABR and MRI

Kylee is scheduled to have a ABR (a sedated hearing test) and an MRI on monday at Thedaclark. Kylee has failed a few hearing test but we are not sure if she fails them because she can't hear or because she don't like to have her ears touched (they have to put this little machine in her ear like a ear thermomitor). So we decided to have the sedated ABR done so we can know for sure where her hearing is at because speech is so important right now. We decied that since she was going to be sedated for that then we would do the MRI also. Some of the other 1P36 kids have teethered cords and other spinal issues so we just want to make sure she is ok as she has never had one done before. We are also starting back up with therapy next week. With being in the hospital for a week she didn't have any therapy and has gotten kind of weak.

Thank You

I would just like to say THANK YOU to everyone for all your help and kind words during Kylee's recent hospital stay. It made things alot easier being so far away knowing that my 2 boys were being well taken care of. Also, thank you to my mom for being by my side the whole time we were at the hospital. I can not thank you enough for that.

Lennox-Gastaut Syndrome

2009-01-22T09:26:00.003-06:00

Lennox-Gastaut Syndrome Diagnosis

Just wanted to take a quick moment to let everyone know that Kylee was back in the hospital on Monday and we are still here. Sounds like we are going to be here for awhile. We are at Children's Hospital in Milwaukee (about 2 hours from home). They ran lots of test on her and have found that she has Lennox-Gastaut Syndrome. I don't know a whole lot about it so it will be a learning process. Right now they are trying a new medication on her but because she has failed so many other medication she only has a 5% chance that this one will work. They said if that doesn't work there is a low carb high fat diet we can try however they would want us to leave her tube feed on that only eat a little by mouth for taste. Then there are a few surgeries also and 2 new medications that should be out so. So right now we are on a trial and error process.
I really miss my boys (Jason, Collin and Keegan) and can't wait to see them this weekend. Hopefully we will be out of here soon. Not have a lot of time to write as Kylee has to have someone with her 24/7 so I just got out for a quick break. I'll try to post again soon.

Kylee's Hospital Visit

2009-01-13T18:32:00.007-06:00

Kylee's Hospital Stay

Well over the weekend we ended up having to take Kylee to the ER. On Friday during OT we were swinging her in a blanket. Something we do every OT visit and she loves it. For whatever reason she decided to have a seizure during it and it was a different seizure then we have ever seen before. It lasted about 20 minutes and she became really sleepy. Our poor therapist was so nervous about it she called to check on us. She had the one on Friday, one on Saturday and then four on Sunday before we decided to take her in. Jason and I took her to Thedaclark. The Dr in the ER didn't know what to do. He said she looked ok to him and her EEG we had done on Tuesday looked good compared to her other EEG's. I said whatever she is doing now is not what she was doing on Tuesday. So he called Dr Edgar (our neurologist) and he said our options were to either increase the meds she is on or go inpatient for a EEG and see what it says. Well I didn't just want to increase her meds without knowing what was going on so we went inpatient. So happy I made that decision. She had a video recorded EEG and they found out she is having a different type of seizures then she was having before and they needed to be treated differently then her infantile spasms. So we now have another seizure med added to the list. We had a hard time getting the medication. We stopped on our way home last night and none of the 3 pharmacies where we live had it. Which the Dr at the hospital specifically asked to speak with the pharmacist so they were sure to have it for us. So we were unable to get it until late this morning so we were unable to do lab draws today. Many Dr are not happy about that and neither are we. Good lesson learned. I have posted a few pictures of her all wrapped up for the EEG. One thing about Children's Hospital (either at Neenah or Milwaukee) is the staff never forgets you. We haven't been inpatient at Neenah for over a year and they all remembered us. I also met a nurse who has 2 special needs children and she was able to give me lots of information and an organization in the fox valley for children with siblings who have special needs. They get to do lots of fun stuff and talk about how they feel about having a sibling with special needs. When we called to say we were staying Collin was very concerned and he said if both mom and dad are staying grandma then it is bad. They understand way more then you think they do. Speaking of Jason and I both staying. We had to sleep on a pullout sofa that was no larger then a single bed. So funny.......I think that is all the information about our stay.

Kylee's 2nd Birthday

Sitting

We have been working really hard on independent sitting. She is getting a lot better. She can sit pretty good if we stick the boppy pillow around her. The below picture was taken on Sunday when she was having lots of seizures so maybe if we can get them under control she will do better. If she can sit that good when she is having them....maybe there is hope. I feel like we have been working on sitting forever.

Kylee's First Haircut

Last week we had Kylee's first hair cut. A lady by the name of Lori who works with my sister came to our house and cut her hair. She did a wonderful job. She was so patient with her. When Kylee would start to move around she would just say ok. I will stop and wait until you are ready. I am so thankful she was so good with her. We saved a big chunk of her curls. It was sad to see them go but alot easier doing the hair in the morning.

Just a few MSC pictures:

Kylee and dad Christmas morning

Kylee sleeping in her stander during PT

Tomorrow

Tomorrow we are going for Kylee's 2 year old check up and lab work. It should be an interesting visit. I have lots of questions. We are also going to start her tomorrow on half Nestle Good Start and half Peptamin Jr to see if that helps with the throwing up. I had found a story about a little girl who was younger then Kylee but weighed the same and had the same tube feeding schedule as Kylee and was also throwing up once a day just like Kylee. They switched to 1/2 of the formula they used when the little girl was little and 1/2 Peptamin Jr and have gone 4 weeks with no vomiting. I am hoping for the same.

GI/EEG and Teething

2009-01-05T17:06:00.008-06:00

EEG

Well the holidays are over....It went so fast. We have a busy week this week. Kylee goes tomorrow for an EEG. She has reached her increased levels on the medication so we have to see if it has helped. I currently have a call in to neurology as she is still having seizures. They are less intense and less frequently but still having them.

Thursday she is having an upper GI to check to make sure there is nothing going on inside that is causing her to throw up (such as her feeding tube blocking something). The throwing up has also decreased since we have started her on the Peptamin Jr but it is still happening.When we took her in last week for labs I had them do a weight check and she is down about a pound. Not sure why but the only thing I can think of is the seizures must be eating up lots of calories. I have heard they do that. We have her 2 year old check up next week so I am sure we will be talking about that along with a long list of other things.

Teething

This past week she has been really tired and has been crying (which she never does) so I was concerned about here.She also has stopped eating baby food. Well I see she is getting a tooth so I think that is what is going on. She was so tired today that she fell asleep in the stander during PT. I took pictures so I will have to post them. I have lots of pictures I want to post just have to find the time.

Hotel

We went to a hotel for New Years Eve and I was so excited because I thought we would be able to take Kylee swimming for the first time however the water was way too cold for her. That seems to be our problem just about everywhere we go. We have heard that there is a hotel in Waupaca (about 20 mins from where we live) that has a heated pool. You can pay to just go there for the day so we want to do that some time soon. I think she would love swimming as she loves her bathes.

Hair

We have been having major issues with Kylee's hair. She loves to roll so it gets all tangled in the back and she hates to have her hair combed or have pretties put in. We are thinking about getting her hair cut short (a little pixie cut). I am going to talk to my hair lady when I go in next week and see if she thinks she could handle it. It has to be the right person because they will need to be very patient with her. It is will be sad to cut it because it is so long (to the middle of her back) and has some curls but I think it would make live easier for all of us if we cut it.

Kylee's 2nd Birthday

2008-12-17T18:21:00.008-06:00

Here is a video of Kylee from birth to her 2nd birthday. It is hard to imagine that it has been 2 years already. As I was putting this together I realized that I have missed almost a whole year of Kylee's life. We have pictures when she was first born and then nothing until she is almost one. Just goes to show how busy that first year was. It seems like just yesterday we took this little 4lb 11 oz little girl home in a horrible snow storm just so I could get home to my boys (Collin and my husband) and have my family all together again. I can remember having people come stand outside our window while I held her up in front of it so people could get a peek at her because we didn't want to expose her to any germs. Now she is out and about enjoying the world. She has changed so much in these 2 years. It was a roller coaster ride but it was all worth it. I have the most wonderful little girl who has taught me so much. HAPPY BIRTHDAY KYLEE!!!!
I hope you enjoy...

Photo and video editing at www.OneTrueMedia.com

GI Appointment

2008-12-11T18:48:00.002-06:00

We had Kylee's GI appointment with her new Dr today. His name is Dr Noe (he is a Children's Hospital Dr but he comes to Green Bay....a 45 minute drive is so much better then a 2 hour drive). I really liked him a lot. He explained things so well. He said he thinks that her stomach is not emptying because her brain is not telling it to. He said between the 1P36 and the infantile spasms her brain is just not working properly. If the brain can't tell the stomach to empty it won't. So as the day goes on the milk just builds up. That is why when he check her stomach in the morning it is empty but as the day goes on she will have 3 and 4 oz of milk in there and it would be 3 hours after she ate. He gave me lots of options. He said he would give me all the options and then we could discuss what would work well for us and what we would like to try. So our first option was to give her a antibiotic (arythamyacin..I probably spelt it wrong). He said they give it a little different then what they do when you are sick. He said it helps to empty the stomach. Our second option was to do a night feed. She will get a slow drip of milk for 10 hours from 9:00 at night to 7:00 in the morning. Then she will not get another feed until 11:00 am/then 2:00 pm and then 5:00 pm. We can also continue to offer whatever she wants orally which is never enough to not give her a supplemental feeding. Our 3rd option is a GJ tube which has some side affects that I am not to excited about and then our 4th option is to do IV feeds with the central line she has place in her chest for blood draws however those also have lots of negative side affects and is hard on the liver which one of the medicines she is already taking is also hard on the liver.....so.....we decided to try the night feeds for right now. He said to give it a good month and see how it goes. If that doesn't work then I want to try the medication. The 2 other options are at the bottom of my list....not anything I want. On a good note he was very excited with her height and weight gain. She was 20lbs 11 oz. We are going to start the over night feeds tomorrow night. I figure I probably won't sleep good the first few nights until I know that she won't throw up with them and I need the nurse to help me figure out how to set the rate and dose on the machine that will give her the feedings. My math skills aren't up to par lately :)

Kylee's Birthday Party

We are having Kylee's 2nd Birthday party on Sunday. I can't believe it has been 2 years already. That time went so fast. Grandma Janice and Grandpa Eddie bought her a really cute dress to wear and some new little ponytails to go with it. I will be sure to take lots of pictures so I can post them. I also have pictures of Kylee in her new stander that I want to post some time soon. Live has been busy...can't imagine why...I only have 3 kids under the age of 4.

Kylee's IFSP/Nuerology appointment

2008-11-26T20:07:00.002-06:00

IFSP

We had Kylee's IFSP on Monday. It is amazing how much she couldn't do 6 months ago and you feel like she has always been able to do that. Such as rolling. She met some of her goals. I think 2 or 3 so I was very happy with that. We decided to up her Speech visits as that has always been an issue for us and we would like to work more on eating and get her vocal. We also talked about school a little during our IFSP and we talked about maybe doing a slow transition. Start maybe by taking her when the classroom is empty and then slowly working into a regular school day. I am just worried that she will get into a different setting and shut down and go right to sleep. Sounds like it will be a process to transition her but it is an exciting one. We also talked about doing a day where they get these special eye gear from the state and then we can invite anyone who works with Kylee on a regular basis to come over and you where this eye gear and do different activities so that you can understand what it is like to see the world thru Kylee's eyes. I think this will be a good thing to do. I think we all forget about her vision difficulty once in a while and then don't use as many vocal cues as we should.

Neurology

We had a good neurology appointment. I really learned alot during it. Our nurse Marsha also went along which was really nice because she could help me remember my questions. He said her EEG's are disorganized but he is not sure how much of that is from seizures and how much is from the gen tic deletions. He said as long as she keeps developing he is not going to worry too much about it. Because she is having a lot more seizures that I am noticing at home and she also had one while he was examining her he decided to increase both her seizure meds. He really seems very sure of himself that this will work. The seizures are a lot less both in frequency and in intensity but they are not gone yet. He also said he does not feel the throwing up is seizure related which brings me to my next topic.

New Formula

Kylee is now on her new formula and it seems to be helping a little. She is still throwing up but not as much as she was before. We have a GI appointment coming up in the next couple of weeks so we will have to discuss it during that appointment.

Kylee's Birthday

Kylee's 2nd Birthday is coming up on December 18th. I can't believe how fast those 2 years went. We have been working on her invites tonight. She is having a Strawberry Shortcake birthday. I also have been working on some fun stuff to post on her birthday. Hopefully I have them all finished by then......so you will have to stay tuned :)

Nursing

Kylee's Tuesday/Thursday nurse moved away (Julie). So at the moment we are interviewing for a Tuesday nurse. Marsh was willing to pick up Thursdays but she can not do Tuesdays. We have a nurse coming next week to interview but she said she couldn't do every Tuesday but could do one here and there. This is the worset part. Trying to find someone who works well with our family/takes good care of Kylee and that you can count on. There are not too many of those around. So if anyone who is reading this knows of some independent nurses in the area send them my way.

Hope everyone has a nice turkey day!!!!

Collin's Sister

2008-11-11T18:50:00.005-06:00

Just wanted to share a short story about Collin. Today at school they had to color a picture of there family. His had mom, dad, Collin and then Kylee and Keegan. He told the teacher that the picture of Kylee was not his sister because his sister can't walk or stand on her legs. So he told the teacher he had to have another baby like Keegan to color. Well the teacher must of talked him into it being ok to leave Kylee as a big girl but he keeps telling me that is not Kylee because our Kylee can't walk. Right mom? Part of it breaks my heart but then the other part of me laughs. It is amazing how much he understands things and how it is just no big deal to him. That is all he knows. I remember last year when we brought her back from a hospital stay and he climbed up in the car by her and said oh honey you are still having seizures. I'm sorry honey.
One last story about him....Kylee got her Special Tomato chair tonight. It is a purple chair on wheels (I think I have a picture of it below). Well Collin has been wheeling her around the house all night in it and she is having so much fun. I wish I had a video camera so I could tape it and post it. It is so darn cute. She is so lucky to have such a caring big brother.

Pictures

2008-11-09T19:42:00.002-06:00

Just thought I would post a few pictures.......

The Kids at Halloween

Saturday morning hang out watching cartoons

Kylee in her new Squiggles chair

Kylee listening to music...she loves the 80's tunes.

New Formula/School

2008-11-06T14:28:00.003-06:00

New Formula

We have started Kylee on a new formula this week. It is called Peptamin Junior. It is a formula that is already predigested so it should be easier on her stomach. I guess it is not uncommon for kids to not handle the pediasure very well because it is so rich. So we are going to give that a try and see if it helps stop her from throwing up at night. It is some pricey stuff. It cost $6.50 for a 8oz can and she will need about 5 of those a day. Good thing we have insurance. I just hop it works. We also had to up her seizure medication because she was having a lot of them over the weekend. I just wish we could find a dosage and medication that would work well for her.

Eye Exam

We took Kylee to see her new eye Dr in Green Bay. I really liked him alot. He did a great job explaining things to me. He said he definitely agreed with the prescription of her glasses. We are going to do some further testing after the first of the year to see if she has cortical visual impairment and then also confirm what we learned from the Janesville school for the blind as far as what distance she sees best at and what size text and that kind of stuff. We have to go to Madison for this so that is why we are waiting until after the first of the year.

Stander

We are going to be getting Kylee's stander tomorrow night. Can't wait to see standing in it. I will be sure to post pictures soon with her in it.

School

Last week we had a meeting with Kylee's birth to 3 coordinator and she had stated that she had run into someone from the school district that said what can you tell me about this little girl who will be turning 2 in December (the school gets a listing of children with disabilities that might be coming into there school district but they don't know there name or much else about them). So April filled her in on Miss Kylee and said that I had also been asking about school and what happens once Kylee turns 3. Well we found out that they are willing to take Kylee into the school district in September instead of waiting until her 3rd birthday. So she told us to think about it and then once we decided to let them know so they can get going on the process. We are leaning towards letting her go in September because I can't think of any negatives to letting her go early. It is just in the morning. The bus would pick her up and drop her off and she would receive all therapies at the school....So anyone out there that has already gone thru the school process with a disabled child let me know what you think...I would love to hear about both the positive and negatives.

Thank You

Thought I would post a note on here saying thank you to Shelia for the wonderful card. It really made my day. I'm happy you enjoy reading about our princess.

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