With the announcement of my new pregnancy, and all the chaos that naturally ensues, I'm afraid I haven't been able to update everyone as much as I would like.
Charlie began two weekly sessions of private outpatient physical therapy about a month ago. We are absolutely in love with one of our new therapists. She is engaging, and full of energy. After two sessions with her, Charlie actually took three independent steps! Our other new therapist leaves something to be desired. So much so that I think I would rather cancel that session and do work with him myself at home. At the hospital where Charlie receives services, we were introduced to an orthotist, who fitted him for SMO's, or Supra-Malleolar Orthosis. These are a type of orthotics that are made of plastic, and go inside the shoe, up to the ankle. It provides support, helps maintain a natural foot position.
Well, we received the SMO's, and were informed that our insurance doesn't cover orthotics, so we would be responsible for the $1300 bill (this is the discounted price, of course). UGH. We will be appealing the insurance company for coverage, as I think most medical professionals will agree that these are a medical necessity for Charlie. As a result of all of this, our family is seriously considering moving to Pennsylvania, where children with disabilities can receive medical assistance, regardless of family income. We learned this during an Angel playdate we had with some of the other great Angel families in Pennsylvania.
The good news is that Charlie has made some really great progress in the past few months. He is generally more engaged during his therapy sessions, and seems to have a greater understanding of what we ask him to do. He began learning PECS, which is a picture-based alternative communication system, and is having real success with that. Like I mentioned before, he also took three independent steps during one of his therapy sessions. I have no doubt in my mind that this child will walk, and I think it may be before his 3rd birthday. That alone gives me so much hope for Charlie.
In the next few months, we will begin the application process for preschool. I'm quite nervous about this, as I feel like there is so much pressure to choose the program that is going to help Charlie the most. I've heard too many horror stories about lackluster special needs classrooms to NOT be anxious about this decision.
I believe that's all for now. I hope that I will have a lot more exciting news to post in the next few months!
Monday, March 19, 2012
Wednesday, January 18, 2012
Holidays and beyond
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!
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!
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