New neurosurgeon and genetics

I got a call in the beginning of April from the geneticist that saw Carly when she was first born. They did a full genetic screen on Carly and since I never heard back from then I never gave it a second thought. Well they called to let me know that her chart had gotten misplaced and that they found a mutation with her genes. They said she has Chromosome 15 Duplication Syndrome and that Thad and I needed to be tested to find out if it was inherited or a mutation during development. With C15DS children can development Thad and I were tested and it turns out that it is a mutation. So now we just follow her and they try to find another child like her.

MRI in April

After Carly's MRI in March we saw her neurosurgeon's NP. The MRI and recovery took longer than planned and we were late for her appointment. The NP wasn't happy and was rude but she still saw us. Her Chiari hasn't gotten any better or worse but her shunt is over draining and she has slit vents. The NP said that we could put an anti-siphon valve in and let her body do most of the work. She said some other stuff and I can't really remember what it was but after leaving I did not feel satisfied. After telling Thad about what happened we decided to get a second opinion. We saw the Dr that we tried to see when I was pregnant. He was amazing! He decided that we would watch her and see how things go. He increased her pressures and told us to keep a log of headaches and night wakings. So now here we are, waiting to see what happens. Hydrocephalus is a waiting game. A CRUMMY waiting game.

Little gymnast

We started Carly at The Little Gym once a week to do a gym class. She LOVES it and it has helped her coordination so much. The interaction with other kids has been great for her too. We are working a lot on gaining strength, especially in her legs hoping that it will help out with her ankles. Her speech is even improving. She loves singing at the end of class and going to get her stamp. I am so happy with the progress that she is making.

Hydrocephalus Walk

We went to our first Hydrocephalus Walk. It was an amazing experience to meet other hydrocephalus kids and their families. We had a great time and had a lot of support from our family.

It is an honor to be a part of such a friendly and supportive community.

Happy Halloween

Happy Halloween!!!

by the way...Carly is SCARED of Halloween

Hospital again

Carly was back at PCH for a week.

I took her in for a high fever and spent 6 hours at the ER. She tested positive for Influenza B so they started her on tamaflu and sent us home. The next day was sunday and she didn't seem to be doing any better. Still had a high fever, throwing up, lethargic, and wouldn't eat or drink. Finally we decided that she needed to go back. I got her in the car and as soon as I started to back out Carly threw up again. I ran in the house to grab a towel and a change of clothes so I could change her at the hospital. We finally got down the road and she started throwing up again and blacking out. I called Thad and told him we were coming home and to call the ambulance. He met us at the driveway and grabbed Carly out of the car. I called my parents (who had just gotten to Idaho and asked if my mom could fly home to be with me). The ambulance came and took us to Del Webb. My sister met us at the hospital since Thad had to stay at home with the other two kids. They started running tests. They found she had pneumonia, kidney infection, ear infection and the flu. Transport was called so we could be transferred to PCH. Guess who was standing outside the ambulance doors when they opened? My mom!!! She got a flight from Idaho Falls, connected in Salt Lake and her friends happened to be on the same flight so they brought her right to the hospital. Carly was treated for severe dehydration, pneumonia, and the flu. She had a VCUG and found she has grade 2 kidney reflux...guess that's where all her bladder infections were coming from...so they started her on a daily antibiotic. The good thing is that there were no complications with her shunt. So after a week we were finally released. Good times at PCH!

Summer fun

Carly is mischevious. Yesterday I was cleaning the kitchen and Cayson was watching tv and playing with Carly. It seemed pretty quiet after a while so I asked Cayson, "What is Carly doing?" He answered, "I don't know, she isn't in here." SERIOUSLY!!! After momentary panic I realized that there was no way she could have gotten outside so I just needed to look a little. Carly's new thing is to close all doors, unfortunately she tends to be on the wrong side of the door after its closed. I found her in the bathroom (door closed of course) sitting by the trash can sucking on a tube of toothpaste. Yesterday she also emptied and shreaded a whole tub of wipies all while I was doing laundry. Today she tore up a book cover and unrolled a whole roll of toilet paper then proceeded to shread and eat it. This girl is a handfull!

She's starting to talk a lot more. I get yelled at a LOT! For such a sweet looking girl she can make "Mama" sound like a bad word. Her vocabulary now consists of Mama, Daddy, Thank You, Table, Doggy (often confused for Daddy) and What's that. Although I work with her on sign she still only knows more, all done and hat. She is also obsessed with giving kisses now. Very cute but also very wet. We tell her tongue is acceptable now but she better not use it again until she is 21. Wish us luck with that!

Swimming is fun