I am sharing this picture not only because of the season but also because Anniston's OT actually made her this dress! Isn't that so sweet?? Her OT has been so kind and very relatable/understanding with me...totally priceless with a therapist. She has even cried when telling me how much she sees in Anniston and how she knows she will be just fine. Love her. She asked me a couple of weeks ago if she could sew Anniston a fall dress, and I said sure! To which she replied: "Ok, I already took her measurements last week" ha. Too nice.
Well, in trying to be positive, I will just say that Anniston's right arm was pretty affected by the stroke, but it is definitely getting better! On one hand, I could almost say that I haven't seen a ton of progress, but on the other: if we sit back and look at where she has come from, all of these baby steps really are huge. There is a good bit of neglect when it comes to her right arm/hand...she doesn't hold a book or a ball with both hands, but when we are reading a book, we can say "turn the page with your right hand", and she will do it :). We lift the page, and she turns it with her fist...the movement is slow, and you can tell she is thinking so hard about it while she does it, but this is for sure an improvement. She will stand at the piano, playing away with her left hand, and when we say "play with your right hand", she will lift it up and bang the keys.
For a while, we did constraint therapy at home (where we tie down her good arm...I know, seems aweful), but now that she is older, it is a bit harder, so we try to present things to her on her right side to show her that it would be "easier" to use the arm that is closer. I try to sit to her right at restaurants, and we have always positioned her carseat (whether rear-facing or forward) to where the window she looks out of is to her right to help prevent any favoring with looking to the left. Her eyes look equally in both directions (you would never know how severe the stroke was by looking at her face...such a praise), but her arm is the main form of neglect with her right side. I know as she gets older and sees the importance of using it, there will be much improvement.
She wears this little soft thumb splint on her right hand most of the time when she is awake...mainly at home and at therapy. I think she had just spilled applesauce on it in the pic if you were wondering :). This splint has really done wonders with helping her hand to be relaxed while holding her thumb out. She had another thumb-loop splint before this that was great, too, but she learned how to take it off :).
The hard splint from last year was great, but it did not last very long because she was to wear it at night, and it began to interrupt her sleep :(...
All in all, her right arm is getting better! I think I have mentioned this before, but the return of movement after an injury like this usually starts at the shoulder and moves down to the elbow and then to the fingers. We have to resist the urge to focus on her fingers because that can be discouraging, but if we look at all that she is doing with her arm as a whole (pulling up, crawling, bringing it to mid-line more), we can see so many improvements!
Okay, on to speech. Hmmm...where to begin. Basically, since the stroke affected the left side of Anniston's brain (where speech is), it appears that some of her expressive language (talking) has been impaired. The huge praise is that her receptive language (comprehension...what she understands) is testing within the normal range! I know that is such a praise. Yes, it can be hard sometimes when I focus on her not talking well, and yes, there are names for the disorder, but we are choosing to be positive and praise God for how far she has come. We are choosing to believe that He is healing her and that we will see more fruit of that healing eventually...we have already seen so much! Such a blessing, too, that she is so young and that her brain is so plastic.
Basically, Anniston is verbal...she tries to say things and grunts some (not preferable), using a few consonants and vowels. She understands SO much, so considering that fact, her temperament is VERY good seeing that she does not seem to get too frustrated when we cannot understand what she is trying to tell us. (Don't get me wrong, we have our moments though.) She will try to mimic us, but it doesn't usually sound like what we are saying. She uses a few spontaneous words that we can pretty well decipher ("out", "up", "on"). She might repeat "mama" or "dada", but she has not intentionally called us "mama" or "dada". There are many animal sounds that she will say/try to say, and really usually she will at least attempt most words if we ask her...just not so much when we don't prompt her. It seems she knows what she wants to say, but getting it from her brain to her mouth is hard. Didn't even know there was such a thing before all of this.
Sometimes it overwhelms me thinking about the future. School. Reading. Writing. BUT, we just have to take it one day at a time and realize that she is God's child, and He has done and will do so much through her.
Sometimes I get frustrated when other people say things like "oh, speech will come", and then they usually try to relate by saying that their child didn't talk much until they were two or three. I understand and really am grateful for people trying to reach out, but part of me wants to be like: "no, you really don't get it." (And, I totally would be that person if not for going through this myself, so I really do understand where those comments come from.) Oh, and then there was this time that I was calling to talk to someone about getting swimming lessons for Anniston, and the lady thought it would make me feel better by saying that they have a 15 year old girl taking lessons who had a stroke as an infant and says one to two word phrases...it was all I could do to make it through the rest of that conversation. There are also some stories of children doing so much better after similar strokes. I have to work really hard at not comparing because it really does NO good, and above everything, I KNOW that God is doing some big stuff in her! (And, like I said in the last post, it is NOT the MOST important thing. He is. And, my goodness, she is ALIVE and so beautiful and growing and learning new things every day. Such a blessing!)
We just changed speech therapists and have seen SO much more improvement. This is all gradually getting better, and her therapist is very hopeful, seeing how smart Anniston is and how motivated she is. Her therapist also believes that once Anniston masters more of these gross motor hurdles (when she is walking better), the speech will come more quickly.
Oh, and Anniston does have other ways of communicating. She uses several signs still and we also have incorporated the use of pictures some, too. We use visual cues to prompt her, and we are working on strengthening some of her facial muscles...also trying to get her to keep her tongue in her mouth more. We use bubbles and whistles at home to try to get her to blow and just recognize/use her lips more. We read tons of books, point at pictures, try to get her to initiate verbalizations, work on our vocabulary words, use flash cards, etc. All of this is helping, and we appreciate your prayers!
Like I said, she is doing SO well. I just want to remember all of this so that we can have a reference to look back on when she is doing even more! Love you so much and appreciated your encouraging words on the last post more than you know!
PS: Charlotte is coming Wednesday! Yikes! Or, I guess it could be before! Yikes!
I still have fall decorations, nursery pics, and all other kinds of random things to share, so maybe I can cram it all in before she comes. OR maybe I will find some time after! :)