I realized that I haven't given you much update on what we have found with all of the doctor's appointments that we have had with Miss Ana. And believe me, there have been PLENTY of them recently. I will give you a very condensed version.
All of the testing for international adoption came back great. No parasites, no other issues. They do quite the full route of testing there, so that's good to know.
that we don't know yet. The genetics appointment wasn't all that big a deal for us, I suppose because of all the information we got through the process of adopting her. Most of the people involved in RR know plenty of information about DS since so many of them have children with DS, and they are not stingy with their information =).
Her neck scan/x-ray came back "good", meaning she has no issues with stability in her neck.
Heart issues- less than expected, even after our appt with our pediatrician. He thought from his listen that we would find an ASD and VSD, which are holes in her upper and lower chambers of the heart (and the cardiologist in Kyiv told us that this was the case as well). After her echo (I think I am remembering the name of that correctly...it's like an ultrasound type scan of her heart) with a pediatric cardiologist here, we found that she only has a small VSD that will most likely not need surgery. The upper part of her heart is slightly enlarged, but not enough to worry about at this point. She is old enough that he doesn't think her hole will close on it's own, but he doesn't think it will cause any issues for her. We are just going to watch her every six months for awhile to make sure.
As far as appointments with her OT (occupational therapist), she is doing amazingly well. The OT has been surprised at how well she focuses on the things we are working on and how quickly she responds. She learned a few things before even having her eval and seeing a therapist at home (learned to stack blocks, thread string through spools) very easily. When we have gone to our appointments there she learns very quickly and also works through the things that are not in her comfort zone quickly. I think of the shopping cart as a good example from home. Often she will act terrified of something and then by the time we try it next she acts as if it was never an issue. She just jumps right into it.
We have noticed that she speaks with her tongue a LOT. When I say this, I mean that while she may not express that something is causing her anxiety, you can see clearly by the way she reacts with her tongue that she is not comfortable. Especially with doctors appointments that are in unfamiliar offices, she will place her tongue all the way out, nearly going UNDER her chin. (She does have a looooong tongue.) The more anxious she is feeling about something, the more she will do it. Now, there are times that she will give us ques with sound or motions with her hands...like straight screaming or crying, or hitting something away...but those are not often and those are the times that we know she isn't ready to try something. (Hasn't happened at therapy yet, this has been in situations out in our daily life.) When we get the tongue action going on that usually says that "this is not familiar and I am not comfortable with it, but I trust you and I will give it a try". This little girl is such a persistent and focused child that she learns quite quickly. She is also very good at observing to learn (she will copy what she sees us do when it looks interesting to her, especially helpful with therapy), and she learns very quickly with instruction. Her OT told me today, after our second appointment, that she was very impressed with all that she has seen in this short time and sees her easily getting "on grade level" quickly.
We still have a long way to go with speech, which is expected with all of the things she is working with, including the fact that English is a new language for her. I think I would have a hard time with that too!
Some of her more difficult areas:
She does have a problem with "stuffing" food, which we were very prepared for. (I would prefer the stuffing to the option of not wanting to try the normal foods we eat and needing to coax her into eating.) Our OT has started us working on stimulating her mouth before eating to help with that. We just started that today, so I will let you know how it goes. They have an actual class with children that have sensory issues with eating specifically, so I am sure that her suggestions will help quite a bit. She had a lot to tell us about this issue and what some of the causes are.
We also have the speech issues. Ana will have a hearing evaluation and that should help us with a plan there. At this point we aren't sure what role hearing plays in her speaking development. Also, the mouth stimulation we are doing should help with this. It will make her more "aware" of things in her mouth and that is one of the reasons for both the "stuffing" and the word formation troubles we are seeing, according to our OT.
I think that's all the update I have on Miss Ana for right now. If there is anything you wondered about that I didn't cover, just ask in the comments and I will give an answer for you...even if it's that we haven't looked into it yet.
2 months ago