It has been a long time since I have been able to sit down and update Keely's progress. She is keeping us so very busy. The biggest reason she is keeping us so busy is her constant progress. It might be slow, but as long as we keep moving forward it makes all the hard work worth it. Keely's speech continues to improve. She is now labeling many, many things. She is also starting to use many more words in an appropriate manner. She can request several things that she is wanting with one word requests. This is making life for all of us at home so much easier.
Keely is having some issues at school. She just seems bored and gets very irritable while there. A lot of days the teachers will say she had a good day, but I have seen the way she acts there and at private therapy and at home and there is a big difference. The school is really the only place she seems to have problems. I think one of the biggest issues I see there is that the things they have her doing are not challenging to her. She can master something in five minutes and then is ready to move onto something harder. I also think the school does not know what Keely is capable of because she has never really been challenged hard enough there. We are working with teachers and the doctor who diagnosed her and will hopefully come up with a plan where she can get more out of her time at school. She is also hyperlexic so I think that plays a big role in all of this. She loves words and loves to read, spell out words with letters, and just look at different words. She can already recognize so many words, and I'm sure this is not something that is typical with a three year old. So while at school she is suppose to be interested in things that would typically be in a three year old classroom, she is more interested in what you would find in a five or six year old classroom. But at the same time her speech is so delayed it is hard to fiqure all this out. And Keely is very good about only wanting to do what Keely wants to do. So it is kind of hard to fiqure what she really does know because when asked she usually will not answer, but later on you will see her do or say whatever you where trying to get her to do. Such a smart, complex little girl.
Keely has also had to get leg braces (AFO's). She has actually done really well with them considering how hard headed she is about most things (she gets it from her dad, I am sure). She had to get them to try to correct her hyperextending her knee back while standing. So......being the smart girl that she is, we were home for all of about five minutes when she fiqured out she could rock back and stand on her heels and still lock her knees back. She is also sometimes walking on her heels with her knees locked back too. To try to correct this they have added a small heel wedge to attempt to get her more forward off of her heels and also hoping that with time she will just get used to them and it be corrected on its own. Just another example of her not taking it easy on her momma!
As far as the biomedial route, we are still getting secretin infusions which seem to really boost her language. The first week or two after her infusion we really see her using more words and they are very clear. We have also recently started Enhansa. The Enhansa has really helped with her interactions with other people and she is much more affectionate with us. So many nights now she wants to just lay around on us and let us rub on her arms and legs and love on her. I just love every second of it. For so long she was not affection and it was almost like she did not even know we were in the room with her and now she is seeking us out for attention. I love it! We are still trying to work on some constipation issues with the Enhansa, and I am hoping we can work it all out because she seems to do so well on it except for that issue.
I am just so happy that she is getting better. Of course I wish the progress was faster (and easier of course) but it is not. It takes a lot of hard work, tons of money, and sacrifices that I never imagined I would have to make, but I have a daughter who is healthier than she has ever been. She smiles more than she has ever smiled, loves music, books, and learning. I have a son who loves to take care of sister and wants so bad for her to play with him, and while she is not quite there yet I believe that day is coming. I know he will be just as excited as us.
