It's been a long time since I've written anything! Our computer came down with a nasty virus, but it's back up and running, and so am I! (sort of).
The holidays were great. Charlie was perfect on the plane ride to Florida and back. Seeing my family was amazing. I was most concerned about my grandparents, and how they would take the news about Charlie's diagnosis, but they were wonderful and supportive. I couldn't have asked for a better family :)
We had our meeting with Social Security- and our application was immediately rejected because we make too much money. I find this hilarious and sad at the same time. But I may be quitting one of my jobs once the school year ends, which I believe will put us right under the max amount. My next step is applying for Medicaid for the Medically Needy. It's also income based, but they have a few more allowances that "lower" your income. We'll see. There isn't a whole lot for a middle class family with a lot of medical bills :/ But that's another blog, for another day!
We were scheduled to have an overnight EEG last week. Charlie would have been checked into the hospital on Tuesday, and released Thursday. It would also have cost us another chunk of money that we don't really have! The developmental pediatrician (yes, the not-so-nice lady who brought our world to a screeching halt via answering machine) was concerned that Charlie might be having staring spells (because I mentioned it, not because she noticed anything), so she ordered a regular EEG. That turned out abnormal, but didn't show any real signs of seizure activity. However, they wanted to do the overnight EEG "just in case". I personally think his "staring spells" are just that- spacing out. He can always be snapped out of it, and has never had convulsions. I had epilepsy as a kid- I'm practically an expert! I'm also beginning to think that maybe doctors are just referring us to other doctors so that everyone can make a little more money? Maybe I'm just being paranoid. In either case, we decided to cancel the appointment. I know what to look out for in case of seizure activity, and I won't hesitate to take him to the hospital in case it. But I'm not sure that it's necessary right now. In case you haven't done all of your research yet, (!) seizures occur in about 80% of all Angelman's patients.
On a more positive note, Charlie's walking has improved greatly in the past month or so. He can now walk pretty well holding onto just one of our hands. Let's cross our fingers for walking before 3! That would put him at the head of the Angelman's pack! :) We have an evaluation next week for private physical therapy, so we will be doing PT twice a week. I think that will help with this last push to get him walking.
Well, that's all for now. Concerts, work, sickness, and travel- we made it through December and January!
