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!!!