I realized I haven't posted an update on Grace for a while and maybe that's because she is doing so well! But here are some details:
Brain Matter: She recently went for a routine cat scan and to see Sally, the nurse practitioner at her neurosurgeon's office. Everything looks great so we don't have to go back until February! An even bigger improvement is that they won't order any more cat scans unless her head measures too big. It's a huge relief knowing that her shunt is working properly.
Visually Speaking: Grace seems to be seeing better, but it's still not great. She can see a toy held out in front of her, but has terrible depth perception and takes a few tries to grab it. She has a hard time seeing things on her high chair tray and will do a sweep with her hands to feel for any food you may have put down for her instead of looking at the tray. I think this is because it's hard for her to see anything on a light colored background (light cheerios on a white tray) so I'm going to purchase some contact paper to put down on her tray to see if that helps. She has a tendency to fuss if I walk away from her, but am still close by. (For example, if she's in the front of the shopping cart and I walk around to get things out of it.) She can't seem to tell that I'm still close by, so I try to continuously talk to her. I also try and make sure I describe everything we do - changing her diaper, walking to her bedroom, etc. Since we don't know how much she can see, I want her to try and be familar with the different sounds, feelings, smells, etc.
Large Motor Skills: Grace can now sit by herself for about 7 minutes before she starts to get tired and kind of "melts" foward. This is the biggest improvement so far! Her upper body is still too weak to push up on her hands, so crawling will be a while longer. She doesn't like to put weight on her legs so walking will be her biggest challenge. Right now we are looking into getting braces for both of her legs that will help give her more support. Her physical therapist is also wanting to order a stander for her to help force her to put weight on her legs. Both the braces and standers are $2,000+. Normally medicaid would pay for these, but Grace was taken off of medicaid in December since she has primary insurance through my husband's job. We are appealing that decision, but who knows how long that could take. She works with her physical therapist once a week.
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An example of a pediatric stander.
(How cute is this little girl? Her name is Gwyn. Read more about her here!)
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Fine Motor: Grace has been much better about opening her left hand and rarely keeps it fisted anymore. She's also started to nudge things with her left hand. She has fairly good dexterity with her right hand. She still just pounds on toys to get them to play music instead of pushing specific buttons. It's great that she understands cause and effect, but should be learning to push, pull, turn toys instead of just banging on everything. So we are working on that! She works with her occupational therapist once a week on these things. She doesn't have any problems eating and has mastered drinking from a straw!
Speech/Cognitive: Grace is very smart. She picks up things quickly as long as her physical issues don't limit her. (It only took one time of showing her how to drink from a straw before she got it) She doesn't seem to have any cognitive delays - except with things that have to do with her vision. She acts like every other 15 month old! Her vocabulary is a little on the small side for her age, she says, "dad", "Go", and "hi" and can sign "more" and just signed "please" today. Even though she doesn't technically say much, she doesn't have any problems letting you know what she wants - and especially lets you know when she's irritated. She's stubborn, short-tempered, observant, and goofy - just like her mom. :)
For some reason when Grace says "Go", she always angrily yells it. So it's more like, "GAAAAH!" It's so funny and I have no idea why she does it. I think maybe she's warming up to help daddy cheer on the Irish in the fall! Here's a video:
