Baby girl is able to drink some water dropped into her mouth out of a straw. Not a lot, but some. Her speech therapist says that she is micro-aspirating, which we thought sounded awful, but it's actually better than what she used to do. Emma is more able to eat adult food (within limits), but all it takes is one texture to hit her the wrong way or a first bite of something she doesn't like....here comes the gag....and here comes ALL the food. That's very frustrating to have fed her all this food and then just have it come back up again. This is a very common problem with spina bifida kids, so as bad as it is, I DO feel better that it's not just Emma's rare, quirky way.
Emma is still army crawling all over the place and getting into everything she can. We don't have latches on the kitchen drawers and doors yet, so we REALLY have to keep an eye on her. She is working on getting up on her knees. She will crawl forward and then push back with her hands so that she goes up on her knees. She rocks a little and then goes back down again. She'll get it one of these days. Here are a couple shots of her and Lola watching Daddy sweeping the grass clippings off the sidewalk.
As for Emma's speech, she WAAAAY delayed. Right now, her speech therapist is only doing the VitalStim therapy. That's all that she can do for Emma because she's only doing VitalStim therapy for her outpatients. The therapy has really taken off, and her speech therapist is SWAMPED with other VitalStim patients. What a blessing that is. Anyway, Emma's going to start regular speech therapy soon with another therapist. But for now, her current therapist says that all the different sounds, inflections, and body language while she's speaking (which is hilarious I might add - arm and hand gestures, head nods and shakes, raised eyebrows) are actually advanced for her age. The words are up there in her head, they're just not making it out of her mouth. Apparently this is called apraxia and isn't a horrible thing. Obviously, it's not ideal, but some speech therapy should fix it over time. There's basically a mismatch in skills...see this definition: "the child's ability to understand language (receptive ability) is broadly within normal limits, but his or her expressive speech is seriously deficient, absent, or severely unclear." Emma understands commands and can respond to them physically. Combined with the advanced sounds, these two things, are the basic symptoms leading to this diagnosis. You usually can't diagnose a child under two with apraxia, but Emma's is pretty obvious. Just one more thing.
I have a prayer request: I have taken so much comfort in the fact that mentally, Emma will be ok. This is the first really serious mental/communicative delay that we've encountered. Once again, something that we had thought was normal about Emma is being taken away from us. Going waaay back, first it was just a small back scar (now it's huge), then it was being able to swallow thin liquids like formula, immediately after that it was having a normal spinal cord and brain with no cyst, then it was sleeping like a regular kid. Those are all physical maladies that were difficult to accept, but I always hung my hopes on an average kid mentally. And here we are. Scary. But I AM so thankful that Emma has access to all these therapies and a Nan who will take her there.
Ok, update on last year's events:
October 3, 2010
October 6, 2010
Your Uncle Ralph and I keep up with Baby Emma through your blog. Ralph's sunday school class has taken a special interest in her growth. Many prayers from here are for her to continue to grow more normal everyday.
ReplyDeleteWe love you!
Aunt Margie Uncle Ralph