Monday, March 28, 2011

Mer Playing With Her Switch

Switches are likely to be a big part of Meredith's learning. This one is a big, huge red button that you can connect to anything electric. This is connected to an aquarium that lights up and rotates. When she presses the button, it makes it go. You could connect it to a lamp and it would turn off and on when the button is pressed. The button is easy for her to see and it can be adapted to any electric toys or objects to help Meredith learn cause and effect.

Dilantin levels toxic

Well, we finally have an explanation for all Meredith's nausea this winter. Her recent blood draw revealed that the levels of one of the drugs she's on - Dilantin - are way too high. Toxic is actually the word the doctor used. A healthy theraputic level of this drug is between 10 and 20. Meredith was at 51! She had a couple stomach bugs this winter where she couldn't keep anything down and she's definitely lost some weight. That coupled with a dose too high resulted in there being way too much of this drug in her system. She's been getting blood drawn every few weeks to check the drug levels in her blood since we have been increasing Lamictal and are now at her final dose - 75mg 2x/day. We were upset when we discovered that at none of the recent blood draws had they also been checking the dilantin levels. The last time they were checked was in November where her level was 9. So we feel horrible that poor Mer has probably felt awful all winter long, but at least we know what's happening now so we can fix it. She took a few days off of the Dilantin to let the level drop down and is now back on it at a much lower dose. She'll likely come off it alltogether soon and just be on Lamictal. Already, we can see she's feeling much better and has been enjoying eating again instead of us trying to wrestle food into her. Which is good since she's only 22 pounds 10 ounces! She really needs to put on a bit of weight. New favorite food is vanilla pudding so maybe that will help us : ) Still doing beautifully on the seizure front and has only had ONE seizure in about 6 weeks. We can't even believe it.

Friday, March 4, 2011

Transition to School

It seems impossible to believe, but we are beginning the process of transitioning Meredith into the school system. We had our first meeting with the school last week when they came to our house to meet Meredith. Early Intervention services stop promptly on her third birthday (June 13th) at which point all her therapies will transition to the school system. Franklin has a public special needs preschool that has a lottery system for typical kids. It's called ECDC - Early Childhood Development Center. It has a great reputation and I've been reassured many times by her therapists that they have a great program, staff and therapists. So this is where we assumed she would go. I thought this initial meeting was to discuss her transition to the school, but like every experience we've had so far with Meredith, this one also delivered a few curveballs. It turns out this meeting was the first of a few that will take place to determine if ECDC is going to be able to accommodate Meredith. If they/we don't feel ECDC is going to be the best environment for her, they have someone who can help us find a good fit in another district. It was all a bit overwhelming and we left with a new label that makes my heart sink a bit: non-ambulatory. Apparently ECDC does not currently have any other students that are non-ambulatory. They don't have standers or any equipment that Meredith would need (though they would get it if it's determined that that's the place for her) but it was a little shocking to me to hear that there are no other kids like Meredith in the school - a special needs school. I left feeling like we need to start seeing some schools and programs right away. The first program we will go see is this one at ECDC. After that, we'll investigate other options just to see how they compare. The next thing that happens is the school system does an assessment of Meredith's development and then we all meet (whichever EI people we'd like present, the parents and the school system) to discuss placement and IEP. That meeting is scheduled for April 29th, so we have a bit of time. I love the idea of Mer being in an environment with a few kids that have somewhat similar needs. And I worry about her being with kids that are all "ambulatory" but have other needs that result in them being more aggressive since she's so completely defenseless. I know we'll figure it out - we're just going to need to do some work to get there.
Mer seems to be getting better now from another stomach flu, she's had a really rough winter with illness. Have I mentioned I'm ready for spring!?