Tuesday, July 16, 2013

Therapy, Therapy, and more Therapy

I am happy to report that since my last post, um like 5 months ago, we have not been in the hospital!!! But you may be wondering what we have been doing other than working 2 full time jobs and trying to keep up with an extremely active 4 year old and manage Hadley's daily routine, well it's Therapy. At least that is what I feel like I am doing. Luckily Hadley loves therapy and does not seem to be bothered by the constant in flow of new people making her do various things. So since Hadley was 10 weeks old we started Physical Therapy with Babies Can't Wait, the early intervention program in Ga. We were assigned a therapist that I love. She has alot of experience and has been so helpful throughout everything. Once Hadley started to heal from her decompression it was very obvious that we needed to pick up the pace a bit. It so happened we had very good friends with very good connections at a Therapy Center. They specialize in Hippotherapy, (horse therapy), but it is a bit too soon for Hadley to jump on a horse so for the time being we stick with the occupational and physical therapy in their center. From the start we noticed her getting stronger and I felt really good about the way things were going. With BCW the parents are hands on and work side by side with the therapist throughout the session which has it's advantages, first being that it is done in your home using your toys and things you have so this helps you when you are by yourself and wanting to work on the things you did during therapy. The Therapy at the center is done in therapy rooms. At first I was there to participate but once Hadley got used to the therapist I stayed out. I do like to be able to see the progress she is making but I also realized that Hadley needs to be pushed. When I'm there Hadley knows that she can cry and I will pick her up to hold her. Why not. But now we have the best of both worlds. The drive is a little lengthy to the therapy place and I have had to recruit my Mother in Law to help with one of the days because it is just too much. Now that brings us to her 4th therapy that was added....

Pretty much before Hadley had her decompression her neck was so weak she could hardly hold it up therefore we did not push the food with her. I had tried some puree's but I was so worried that she was going to get choked I really held back. Once she started healing I began with the purees again. First thing that happened was Hadley refused the spoon. Would not even budge on that.I mean we would make her laugh and then sneak it in there. She would get mad and as a result I felt like she was beginning to resent food. I started with finger foods then and mainly the puffs. She really liked those and I felt like we were making progress. But once we progressed with some other small bits of food Hadley started gagging and would ultimately throw up. That happened several times and after that she decided that instead of trying to swallow she would just chew the food and spit it out. So I brought this up with the therapist and they all decided that it would be good to start working with a speech therapist. Before setting that up we had to get a swallow study done at Children's. Which is basically a moving xray taken while something is being swallowed so you can determine if it is being swallowed correctly. I had brought about 5 or 6 things that we offered her and I would attempt to feed her while they took xrays. Luckily we only had to get 1-2 bites down of anything because I knew she would not handle anymore. So the results were that she does totally fine on thin liquids (formula) but the thicker liquids and food is almost going down the wrong way, but she does catch it, hence the gagging and throwing up. From the results of that we were referred to the feeding team at the hospital. That was set up much like the way the swallow study was done but it was a much longer eval. She also thinks Hadley's Hypotonia, low muscle tone, is playing into effect with her tongue control. There are a ton of small muscles in the tongue that need to work to push the food to the sides of your mouth in order to chew and then swallow. With Hadley everything just goes back to the back unless she hold onto it and then spits it out. The good thing is Hadley really enjoys food. So while we are debating on how to get her to eat it I just keep giving it to her to at least chew and spit out. So finally we could begin the therapy and we meet with her weekly as well. She has been helpful in giving us ideas on what to try. One is smoothies, luckily Hadley loves them and will tolerate sipping them out a cup that you hold. She protest at first but gets used to the idea. That is her daily breakfast and I am overjoyed at that. I mean I really want to stop the formula but until we can get some nutrition in her I don't feel comfortable doing it. She also recommended giving her strips of things that she can hold on too and guide them in her mouth while she chews without losing control. The best think we have found for that are those puffs, yes Cheetos. And can you imagine, she loves them! So at least we have the nutritious smoothies to start the day right. But you can try and rack your brain of soft strips of food, yet sturdy enough to hold.....there aren't many folks.

So in a nutshell we are doing therapy 4 times a week and it gets pretty hectic. Luckily I have some support with my Mother-in-Law and the woman that keeps her also lets the therapist come to her house to work as well. So we will continue to hopefully make progress1