Yesterday I took Angelina to her usual therapy sessions but it was a special day because she received the Wiggles Stander and the bath chair we have been waiting for! She really enjoys being in the stander. She can play freely with toys because it has a tray to set things on and she does quite well in it! We have been advised to only allow her in it for 15 minutes several times per day then increasing that amount of time by 5 minute increments to get up to 45 minutes.
I am so proud of this girl right now. She is doing so well with her therapy sessions and she tries so hard to sit up by herself. She is almost there! She gets up on her elbow or even up on her extended arm, but just hasn't quite figured out how to get the rest of the way up. Angelina's oral aversion has been so desensitized since we started this whole process and now she will take drinks of "pink milk" aka strawberry Pediasure. After the first taste she grabs at the cup and leans forward to get to the cup. I always ask her to take a drink so she sees that she has to want to get some before there is any in her mouth. She likes iced animal cookies and can pick one up from her tray and actually put it in her mouth. She gets a little bit of crumb on her tongue but she doesn't reject it and keeps trying to get more.
I am so proud of this girl right now. She is doing so well with her therapy sessions and she tries so hard to sit up by herself. She is almost there! She gets up on her elbow or even up on her extended arm, but just hasn't quite figured out how to get the rest of the way up. Angelina's oral aversion has been so desensitized since we started this whole process and now she will take drinks of "pink milk" aka strawberry Pediasure. After the first taste she grabs at the cup and leans forward to get to the cup. I always ask her to take a drink so she sees that she has to want to get some before there is any in her mouth. She likes iced animal cookies and can pick one up from her tray and actually put it in her mouth. She gets a little bit of crumb on her tongue but she doesn't reject it and keeps trying to get more.
On August 6 she had her first BOTOX treatment and a week after that we started with the Craniosacral Osteopathic Manipulation (COM) therapy. I asked her physical therapist yesterday what her opinion was about the COM and she thinks it is playing a good part in all this good stuff she is doing. She said that BOTOX weakens the muscle to allow for stretching and easier movement but does nothing for intentional fluidity of movements. I was so happy to hear that! FINALLY something is working for Angelina! Larry and I learned a long time ago to live in the reality of her condition, basically don't be naive about what she can and can't do, and with that in mind keep ourselves open to lots of hope. I know now that moments like these that she has been having, seeing the lights come on inside her, make it all worth keeping feelings and expectations at bay until it's time to unleash them! I do have have high expectations for her but some of those come with a big dose of hope.
Moving on.....I found out that once Angelina turns 3 - this January - she will be eligible to attend school district pre-school. I am excited about this for her because that means she will be getting therapy EVERY DAY of the week in addition to the PT, OT and ST we do with Cook Children's. She will have role models to try to follow and do the things they are doing as well as social interaction with other children that are similar to her. On the other hand, it really freaks me out to think that I will have to leave her with teachers of whom I hope are capable of caring for her. I will be able to observe for as long as I want until I'm comfortable and I know I will reach that level sooner than I think but it still give me anxiety to think of leaving her. It will be a million times harder than it was leaving Brady with the church ladies for mother's day out. Not because I love him less but because he can tell me if something is wrong. With Angelina I would have to see physical marks or try to interpret her social cues. I am really trying not to play the "worst-thing-that-can-happen-to-your-kid" game inside my head but it's hard.
I have also found a type of therapy called Conductive Education. There is a place in Dallas that has a program and I am in the process of researching that now. In a nutshell it basically is intensive, aggressive physical activity made out to be fun. The kids go for 5 hours per day for 5 days per week for like 4 or 5 weeks. It's a commitment but if it can help her then I think it's worth going to. By doing repetitious movements and exercises the brain has the ability to "re-route" pathways for telling the body how to move. Angelina's therapists are torn about it. One had a patient similar to Angelina that really responded well to Conductive Education. The other had a patient that didn't. However, the one that didn't respond well had low (floppy) tone and she wasn't strong in her joints. While she's not totally signing off on this that same therapist thinks that Angelina would respond well to it because her muscles are strong from the work we've been doing and she doesn't have loose joints to watch out for. Plus, they both agree that I have been doing this with them long enough that I know what my child's limitations are and would know if they were moving her in a way that wasn't good for her. SO, more on that when I have more information.
Angelina also has an appointment with Dr. Johnson in Richardson to talk about Hyperbaric Oxygen Therapy (HBOT). I am so glad to finally get an appointment with him to see what he recommends for her. More on that after next Wednesday!
Okay, I am out of typing breath!!!
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