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.

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!?

Ear tubes and a new fancy chair

As a result of the many, many ear infections Meredith has had, she had ear tubes put in yesterday. Honestly, it was a piece of cake and Meredith was a champ, as always. It only took about 10 minutes and then Mer was awake again, and back to smiling away. The hardest part was getting up early enough to be at the hospital at 6:30am on a freezing cold, snowy morning : )

January has been a funny month for us. Overall, Meredith has been quite sick. She had 3 back-to-back stomach bugs, a staph infection and has lost 3 pounds. But despite her frequent illnesses, her seizures have remained under control. So while it's upsetting that her weight has dropped way off and she's felt awful, we just cannot believe how well she has been doing on her new medication. We are just bursting with joy and relief. Especially since in the past, illness always had triggered seizures. Had we not stumbled across this Lamictal and Dilantin now, I'm sure we would have spent a good amount of time in the hospital this month.

With the seizures at bay, we have noticed a lot of improvement with Meredith's vision and her ability to focus. She watches her hands now when she's playing with a toy, really watching and processing what she's doing. And the increased eye contact and smiles is enough to melt your heart into a giant puddle. Now that Meredith is well, we are back to our rigorous therapy schedule and working on getting her back up to her fighting weight. We are still doing PT 2x/week, OT 1x/week, ST 1x/week and Vision Therapy 2x/month. Perkins School for the blind made a chair for Meredith that Linda Collins brought over for us on Friday. It's the greatest thing, made of durable, lightweight cardboard, so it doesn't weigh a ton and Meredith sits really well in it!

Clever Dad

Display of pillows came in handy in helping Mer take her first ride in a shopping cart.

Anonymous Letter

Dear Snarfy,

I have never sent a letter to a superhero so please read. Firstly, where did you get your powers? The ability to endure a spinal tap with a giggle and a squeak is kick ass! I have difficulty mowing the lawn without bawling. The power to listen and smile while people hold you and blabber?? Helen Keller had better listening skills than me. Being okay with having to work out three times a day!!! I get bloody stools about having to drag my lard ass to the gym twice a week!! That poor treadmill. I know it cries every time it sees my redwood thighs lumber through the doors. Happily going to ten doctor appointments a month. I bitch about having one a year. I have been following your blog closely and I think you are absolutely phenomenal. Your Dad seems like a bit of a handful but I am sure you are extremely patient with him. I just wanted to let you know that you are the reason I believe in superheroes. Life would be so boring without you. I also appreciate your humility. Personally, I think Batman's bat mobile is way over the top. Your understated, yet stylish yellow stander is a far less pretentious mode of transport. And Wonder Woman's red stripper boots have nothing on your classy blue and purple spotted AFO's. Now when I mow the lawn, I smile. Now when I meet people, I listen. Now when I go to the gym, I thank God I can walk. Now when I go to the doctor, I thank God I am healthy. Now when I wake up in the morning, I think of you and thank God you were born. Everybody should have a superhero and I am so grateful to have found mine.