Emma's Grace

Well, Emma has taken her final dose of Vigabatrin. And I’m just waiting. Waiting for a seizure. Waiting for it to all start again. But so far, it hasn’t. It’s been so quiet around here. Busy, but quiet.

Emma had her first birthday. We had such a nice, sunny day. And that weekend, some of Jon’s family came over for a BBQ and a small birthday party. They won’t be able to make it to the party we had planned, so it was nice that they came. Emma got some cute toys and a really cute outfit. I really love girl clothes. I thought clothes for Matthew were cute, but I have a hard time stopping myself from buying everything I see for Emma.

This upcoming Monday is our last day of school. We have a session for July and another session in August, but we are done for the summer. It will be a nice break, but I’m going to miss all of the new things that Emma does at each class. And I know Matthew will miss his time there with all of the toys, the other kids, and snack time.

Our PT will continue during the summer. We’ll have a 2 week break soon, but we’ll keep going after that. I asked Ralph about doing water therapy with Emma. They have a pool at the PT place, so next week we’re going to try putting her in the pool. I am excited to see how it works and if she enjoys it.

We are also in the process of ordering her a compression vest. We should have it in a couple of weeks. It’s kind of like a wet suit, but it will only cover her torso. There will be wires in the back that can be removed. The wires will give her some support. We are hoping that it will make her more comfortable and a little more stable so she will be able to explore her world a little more.

So we wait. Wait and see what Emma will do next. And enjoy every minute of it!

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This day has finally come. It’s been a long road, but today is your very first birthday.

It’s been an amazing year. Your quick entry into our lives. An amazing first 2 months of getting to know you and watching Matthew adore his baby sister. Noticing your funny jerky movements and strange breathing. Thinking I was a paranoid, over-reacting mom. Realizing you were having seizures. Your first hospital stay with Grandma and Papa while Daddy and I were in Vegas. EEGs, MRIs, and bloodwork. Two more hospital stays. And finally a diagnosis at Christmas. But still no reason for the IS.

That day, a lot of things changed. And while some of them weren’t so good, one of them was that we got our daughter back. With the right medication, it was like starting over. And it was beautiful.

Since then, you have been working so hard. You have made an incredible amount of progress. You will never really know how proud we are of you. Someone so small shouldn’t have such a busy week but you do the best you can and we couldn’t be happier.

The day you rolled over on your own was perfect. We had just left the neurologist office and told her that you couldn’t do it on your own. That afternoon, you proved us wrong. Twice. Both ways.

You love the koosh balls. I remember how popular koosh balls where when I was in school (long time ago). They were everywhere you looked. And this many years later, they are your favorite thing to hold on to as we try to improve your grasping skills. You are starting to grab onto things, mostly cloth, but toys are starting to come into the mix.

We are working on getting your arms stronger so you can push up more and maybe even army crawl soon. Also on our current list is sitting. You’ve mastered rolling over, sitting up on your own would be amazing! You almost do it. You’ve yet to grasp that you can use your arms to catch you as you fall over. You completely trust that I will always catch you as you tip, with a huge smile on your face.

You are an amazing part of our lives. And no matter what IS may bring us, you are our beautiful angel and we look forward to every little accomplishment and smile you share with us.

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Our first weak of weaning Emma off the Vigabatrin is done.  So far, she seems to be responding well.  No seizures.  She has been a little sleepy and grumpy, but she’s a baby, with only 1 tooth.  There have got to be some more teeth in there wiggling around, which can’t feel good.  She’s also growing.  So with all of that, I’m not worried very much about a sleepy, grumpy baby.

Of course, we are hoping this continues and she stays seizure free.  But it would be very nice if any breakthrough seizures she may have due to the weaning can hold off for a week.  Emma’s birthday is Thursday and I’d like her to have a happy day.

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So we’ve started weaning Emma off the Vigabatrin.  So far, no seizures, but we’ve only lowered her evening dose by half.  It will take us 3 weeks total to get her off of it.

When we started, she was on 250mg twice a day.  First we lowered the evening dose down to 125mg.  Or as close to as I can get.  It’s all a guess how much I’m really giving her.  They come in 500mg powder envelopes.  I divide it up as best as I can.

Next week, we’ll lower the morning dose down to 125mg.  The week after, eliminate the evening dose.  After that week, she’ll be off of it.

However, if she seizes anywhere in those weeks, we’ll stop the weaning.  We’re also to increase her evening Topamax to four 15mg sprinkle capsules.  After that, we’ll have to discuss with Dr. McCormick what to do next.

Let’s all hope this goes well.  The fewer medications she’s on the better.

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Well, today I spent the morning dancing, hugging, and kissing Emma.  I got a call from Dr. McCormick.  She had received the results from the EEG.

Emma had no seizure activity during the EEG.  There was a little bit of background noise, but Dr. McCormick wasn’t too concerned with that.

Because the test went so well, we’ll be weaning her off the Vigabatrin slowly.  Currently, she is on 250 mg twice a day.  We’ll cut the evening dose down by half first.  Once a week we’ll cut the dose down until it’s gone.

I would have started the weaning tonite, however, my sister’s wedding is this weekend.  Emma is the flower girl.  Because of the chance that Emma could seize as we start to wean, we’ll wait until after the wedding to start.  We don’t want Emma seizing as she walks down the aisle.  Crystal doesn’t need that stress on her big day.

Even if Emma is going to show her up.

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