So much has happened in the past 2 years with our twins, especially with Cate. I have a hard time knowing where to start when telling her story. I would like to start by telling you a little about her.
In the first 24 hours of life Cate was intubated, had a chest tube put in, on many different medications, stopped breathing many times, and in an incubator. However, with all of the things going wrong with her little body she healed. With the exception of her brain injury she is a very healthy little girl. For this we are blessed. We are able to focus on Cate’s brain injury and the symptoms that come along with that. Cate is a fighter! She is very strong willed and already knows how to play everyone who comes into our house. For example, she is placed on an inclined floor (it looks like a slide) to give her the the best opportunity to move. She learned last week that if she rolls over on her back while on the floor mommy will come and get her. A win for Cate. She got mommy to pick her up a few times. So for the next 2 days that is what she did when I placed her on the inclined floor until she eventually realized that I had figured her out. She is constantly testing us and winning most of the time. All of this she does with a big smile on her face.
Below is a current description of Cate’s neurological abilities. (My engineering style brain likes to use bullet points.)
- Cate cannot crawl on her belly in a cross pattern without a lot of effort or on her inclined floor. However, Cate can now crawl on her inclined floor! Watch the video below.
- Cate does not speak any words but she does have over 5 meaningful sounds that she uses. Recently she has started “singing” along with us.
- Cate can now see some detail, 1 year ago she was completely blind. But she does not have any divergence (her eyes do not work together). She can read over 250 words and is learning more everyday! I will post about the reading program in a future blog.
- Cate has extra tone in her upper body and her hips. She used to hold her hands in a fist with her thumbs tucked under her fingers, her hands were always up by her ears with her elbows out, and it was almost impossible to straighten her arms even to clean the inside of her elbows. Now her hands are open, she holds her arms with her elbows at her side or completely relaxed, and she loves to play “patty cake”.
- Cate has just started reaching for items if they are very close to her hands and face. She is able to hold an item in her hand and release it when she is ready.
- Cate does not support her head when you are holding her most of the time but now she can hold up her head when she lays on her stomach. She will hold her head up and push up on her arms for 5 minutes or more at one time. She used to lay there barely able to move her head from one side to the other.
- Cate has had 2 seizures in the past 9 months, focal seizures when she was sick. Previously she had multiple seizures each day, infantile spasms. She is not on any seizure medication.
- Cate used to be very sensitive to textures and temperatures on her skin, her tactile ability. Now Cate is happy with almost all textures and reasonable temperatures. She does not like to be hot though.
- Cate will eat her food sitting in a high chair in the proper sitting position without screaming. This is a big improvement from 6 months ago when you had to hold her while she laid on her back and screamed. She does not like to be in the sitting position due to her extra tone so the car seat is always a challenge. Now she can ride in the car for up to 45 minutes without screaming.
- Cate is a great sleeper at night and always has been. Thank goodness!
- Cate used to have overly sensitive hearing and could not pick out individual sounds. Cate can understand over 500 words.
Hopefully I haven’t missed anything big. It may sound like she cannot do a lot for a 20 month old but she achieves new goals almost every day so we are very positive. I will go into more detail about all of these accomplishments, challenges, and how we are working to heal her in upcoming posts.