Kylee's 3rd Birthday and School

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.

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We Are Home

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!!!