The Best Christmas Present

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

GI

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

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

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

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

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

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

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

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

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

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

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

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

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.