I hope everyone had a happy Thanksgiving...I know we did! It was laid back and relaxing, and even though Ava only at a bite of whipped cream and the butter off a dinner roll, she still really enjoyed having everyone together and just being part of the festivities. I'll upload some new pics after I update!
She's dying to go back to school and has been asking for the bus every hour, on the hour, since about Wednesday afternoon. :) I think she's ready to go back, how about you? We did run into her teacher at Walmart and she just looked bewildered as to why Mrs. Woods wouldn't be at school, haha.
She's officially obsessed with Christmas decorations, so I thought it was time to go ahead and change her page. Dave put up our lights and our blowup Santa and Frosty, and she's just over the moon. We'll probably get our tree later this week, and she'll be all set. We're heading to the mall later to tell Santa that she wants Aqua Dots...I think she just likes the commercial, LOL. She also wants a cowboy hat and a blue drum. Um, ok...Santa will see what he can do!
We've been "talking" about panties and the potty, and she loves the idea of wearing panties, but the whole potty concept just doesn't float her little boat, unfortunately. BUT, she's peed on the potty twice in the last two days, with quite a bit of coaxing, so maybe...just maybe...we'll be able to talk more and more about potty training in the new year! Yeah! We've got a really long way to go, but she's come so far from screeching and screaming at the mere mention of either "P" word...panties or potty! Hooray for Ava!!!
She's been asking for food quite a bit more than usual lately, but just not eating it. She's back to spitting and rubbing it on herself, which is generally a sign that she's really uncomfy. They upped her dose of Neurontin again (for GI pain), but it doesn't seem to be helping much, unfortunately. :(
She's got a swallow study/oropharyneal motility study (OPMS) coming up on Dec. 9, so hopefully that will give us some insight into the choking episodes. We know that her oral feeding skills are basically nil and her chewing is just NOT good at all, so we'll be starting with a speech therapist on Dec. 16 to address both her speech and some of the feeding aspects. She's still got the interest in food, which is great, but her repertoire of foods that she'll actually eat/attempt to eat is just terribly limited, so we'll focus on some of the sensory aspects as well. Her speech has improved by leaps and bounds since starting school, but there is most definitely still a pretty big issue with actual communication, whether it's just a processing issue or what, we're not sure. Her speech is very, very clear, but at the same time, there's not much true communication going on, although she's working really, really hard to get her point across, which is great. Our weeks are now just therapy marathons: OT twice weekly, PT once a week, and speech twice weekly, with hippotherapy starting soon, too. Whew...a whole lot of driving! But, we know that right now, it's our only course of "treatment", so it's ok...we'll do whatever it takes!
I think that's about it for appointments. We won't see Dr. DeClue, the pediatric endocrinologist/metabolic specialist, until the end of January, but it's an appointment we're really looking forward to. We're also really starting to contemplate a trip to Atlanta to have her muscle biopsy redone with Dr. Shoffner, a molecular geneticist/mitochondrial expert. We've found some interesting information that leads us to believe that her biopsy results may have been fairly inconclusive and we just need to be certain as to what's going on with her so we'll know the best course of action to take. Nothing is set in stone yet, but I'll be contacting everyone to compile a pretty detailed family history...if you could help us out, I would so greatly appreciate it!
Love to you all and have a great week!
