I've waited too long and can't keep straight what has happened and what I've already blogged, so forgive me if I repeat myself.
School is going good. Even when Sam is having a really rough morning and I'm worried about her, she goes to school and comes home renewed and happy. The school has continued to be amazingly helpful and accommodating. She leaves the classroom three days a week for an hour of resource and two days a week for speech. Her teacher does an activity called "Brain Dance" which is basically lots of big movements- stretching, crouching, etc. that we all practice as babies, set to classical music. She mentioned at Sam's IEP meeting that Sam was unable to copy any of the movements and would just stand there watching the other kids. By last week Sam was walking around the house doing all these little moves she'd picked up from "Brain Dance"!
Sam hit some major gross motor milestones in October. She climbed all the way to the top of the rock climbing wall three times on her last night of class as well as began climbing sideways across a "bouldering wall". The sideways climbing is really great for brain development as it involves "crossing center". By the way, the climbing wall is REALLY high. I'm guessing 30 feet? And I'm pretty sure I wouldn't be able to climb it once, let alone three times! She also officially is able to pedal her bike all the way around our cul-de-sac and can even back pedal to break and swerve to miss her little brother walking right in front of her. I think all of this was spurred on by her daily treadmill walk/run as prescribed by NACD.
Her speech has hit the point where she has so much ability, I think she just needs more motivation and internal desire. She can pronounce all sounds of the alphabet except for "f,s,l,ch,sh,v,z". And she is imitating the number of syllables when she approximates words. In other words, instead of "baby" being "bu" it's now "bu-be". She has an approximation for "I don't know" and now understand to throw "please" onto the end of her requests.
I think all of this is a natural progression that has to be built upon over time. It is frustrating that it can't be faster, but if I keep my perspective, it is exciting that she has made so much progress in the last two months. She's walking around saying colors all day. We now know that her favorite color is NOT yellow, but is pink. And she is about 900 times more responsive in general than she was in the summer. I asked her today "are you comfortable" and thought "hmm... I don't think she'll know what I'm talking about", but she said very calmly "yeah" and didn't seem confused at all.
Her seizures are not gone. They are nearly gone now, but as soon as I think it's been three days since I've seen one, she'll have a couple. They are still very short and non-convulsive. Her diet has been tweaked quite a bit to try to balance this out. We finally found a medical formula that she will drink. Basically this formula (similar to an infant formula) consists of protein that has only the essential amino acids, meaning it is arginine free. She drinks this in a fruit smoothie three times a day and it provides 9 grams of her protein along with a good part of the fat and calories she needs. From the foods she eats, she is allowed 13 grams of protein. I did come across (finally!) an official recommendation for how much arginine she should be taking in per day. And as I suspected all along, just going low protein doesn't guarantee that her arginine intake is low. A single slice of "low-protein" cinnamon raisin bread containing only one gram of protein, actually has more than a third of her day's recommended intake of arginine. If this were her favorite food and I was giving her ten slices a day, thinking I was in her 13 gram range, we'd be in big trouble. Unfortunately I can't completely use the guideline for arginine because the arginine content isn't available on all foods. The cinnamon raisin bread got me wondering if the craisins that she had become a big fan of since the same time the seizures began were a hidden carrier of arginine, but that information isn't available anywhere! I've even contacted Ocean Spray. So, it is pretty much guess work :( but she seems better off now that she is relying on the formula for so much of her nutrition.
Another big accomplishment was that she followed a three step command in order last week. Sounds bizarre, I know, but very important in developmental milestones.
