Surgery - At this time we have no surgery planned. Ainsley eyelid surgery in June was somewhat of a success. When she chooses to use her sling to lift her eyelids she can get quite a lot of lift. I do feel like the reduction in the length of her eyes was overdone and her eyes seem a little small and pinched. When I see old pictures of her beautiful eyelashes I have a moment when I feel a little stab and want to cry but there is no undoing it so I try to look at the positive, which is that they look better in certain ways. When she is not using the sling/brow for lift her eyelids are still lower than I'd like. The following pictures were taken at the same time and illustrate my point.
We met with the surgeon in August and he felt the lids were lifted as much as he'd intended and that we could still see some improvement. We go back to see him in November and will decide if the lids need to come up a little. It is a minor procedure if they do, so long as it's done in the first year post-surgery. He would simply open the incision at the brow and re-tie the tendon a little higher. I would like him to, but I suspect he won't. She is still having a little discharge from the left eye, the one that was a bit pinched that we asked him to "open up a bit". Unfortunately the lids healed together, so essentially it did nothing.
Walking - We were seeing a PT during the summer and she showed me some more effective stretches which helped her legs to be able to be more straight (they were quite tight from spending a lot of time in casts/braces) which in turn makes it easier to stand (less like a squat). She did a lot of standing in and around the pool (weather permitting) this summer. Here is a little video so you can see.
Ainsley is really pretty strong, the biggest issue is balance. She walks quite well in a walker, though posterior walkers do tend to teach kids to lean on their arms and do little for learning balance. Still, we had it written into her IEP(Individualized Education Plan) that she would use it for all transitions with the exception of when they walk long distances when using the walker would cause her to miss an activity. Her school walker is a bit more compact and she's pretty good at navigating it through the crowded classroom. At home she still finds it more efficient to crawl because it's a lot of very short distances. Although Ainsley stood independently for about 5 seconds during the summer she hasn't been able to do it regularly. Standing balance is the missing piece we are working on. There are a variety of activities we do at home to "work on this".
In addition she RODE A TRIKE! If you missed that post, here is the link with the video.
Speech/AAC - Ainsley's communication hasn't changed much. She does say a few words: mama, all done, down, on, no, yes but it's isn't always clear what she's saying. I suspect there are more words she "says" that we just can't understand. She knows about 30 signs. We are still working with her to use her Nova 7 communication device. She uses it for requests, but hasn't quite made the leap to understand it could be a powerful communication tool for her. We decide to pay to "unlock" the Android features as a birthday gift. I hope that if she can also use it for some fun games (speech related) and apps she will get more interested in using it. Right now it's always around in the TV room. She uses the same type of vocabulary (made by the same company) on an IPad at school. Primarily though she communicates through sign and gestures. I happened to find this old video, taken 2 years ago showing Ainsley doing sign language that I thought was interesting to see.
Fine Motor - Ainsley is able to use scissors quite well, can hold a pencil or crayon and make marks but is still really in the phase of scribbling. She has a good pincer grasp and decent control, but needs to refine her skills. We've realized that she doesn't have a dominant hand and we probably need to choose a "handedness" soon so that she can get more practice using that hand rather than alternating between the two for tasks. I suspect she might be a lefty but there are times she prefers her right. I will be discussing this further with the school OT. She does have enough fine motor dexterity to do this
Cognitive - It is really difficult to judge cognition when a child can't speak. You can test her receptive vocabulary by asking her to point to pictures. She knows her nouns really well. She's a bit iffy with colors, shapes, letters and numbers sometimes getting them right and sometimes wrong. She is good about following instruction. Clearly she understands a lot. More and more she surprises us with the things she does. Steve and I find ourselves frequently saying to each other "Can you believe she did that?!"
School - Ainsley started full day Kindergarten in a special eduction classroom this September. Some days she is pretty tired, but over all it's been really good for her. I really like her teacher. She seems quite enthusiastic and motivated to make a difference in children's lives. She hasn't yet started spending time in the general education classroom, but she should be soon.
All in all Ainsley is inching right along through the inchstones. At the same time she is hitting some bit milestones, like swallowing solid food and riding a trike. She lives a very happy life. She is very loved. She will be turning six next Thursday. It seems that for all we went through early on in her life, she is at a fairly stable point right now. I don't imagine any major changes anytime soon, but know that she will continue to make progress and we will delight in her every accomplishment.