Monday, July 14, 2014

I want a new drug...

One that won't keep me up all night or make me sleep all day. Did Huey Lewis write this song for Josie in the '80s?

Well, since my last post, the anti-seizure medicine trial-and-error continues. Josie went two weeks without a seizure recently, but last week she had two big ones. We went to the ER because she was not just sleeping once she came out of it, she was passed out. I had them check her Valproic Acid levels and learned they were max'd. That means we can't raise her Depokote dosage any more. So the next day I took Josie back up-island to where we live during the year and saw Dr. Maytal to go over our new plan - her new drug. Together we decided to ween off the Topomax, which he doesn't think is doing anything for her, and we're adding Keppra. Maybe this will be the trick. I'm hopeful!

Sleeping is very difficult for us. Someone needs to be watching Josie at all times, including all night as she has had many seizures in her sleep. So we're take turns staying up all night. It's like having a newborn all over again, but worse because of the fear. I really need a night nurse and I'm going through the process of applying for Home Care through the state. It will probably take a a few (or five) months, but there is a light at the end of the sleepless tunnel. I may need to find a nurse in the mean time for a night or two to break it up.

Anyway, outside of the hospital zone this house has been feeling like, we are actually enjoying summertime in Montauk! We've been bringing Josie swimming often and she just loves being in the pool. She swims (being held of course), she kicks her legs and arms together and smiles away. Hydrotherapy is amazing for her.

Rich and I are seeing some incredible live music our here and Tanner is loving camp! We are very lucky to be in this place we love so much. Just riding my bike to town to pick up some groceries makes me so happy. And I have some incredible friends out here that show me in so many ways how much they care. Just asking me how Josie is doing means so much to us.

Oh here's a cute story that Tanner said the other day. He was giving me a hard time getting in the bath and when I finally got him in there I must have let out a giant sigh. He said, "It's hard having kids! Especially two kids. Especially one that has Foxg1 and seizures!"
We then agreed together he should make it easier on me by getting in the freaking bath the first time I ask! :) He's really an amazing boy.


Josie got glasses! Pink frames of course. She likes them most of the time, other times not so much.


And pink sunglasses! How cool? The lenses are supposedly anti-seizure lenses. Can she sleep in them?


Johnson family swim time!


Coach daddy!


Oh how I love that boy's face!


A Montauk sunset


Epic night seeing the incredible Gary Clark Jr. right across the street from our house.




2 comments:

  1. Great blog! Good luck on your journey with Josie!
    - Olivia's mom, oliviacansmile.blogspot.com

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  2. Hi, it's Ben's mom, I introduced myself on the blog when Josie was diagnosed . We have been through everything you have with being told ,"They are not seizures, the EEG doesn't show seizures." He's turned blue, had episodes that were status epilepticus, where they don't recover between seizures, when you think they are just sleeping it off. I finally found a female neuro who specializes in intractable seizures , who will LISTEN to me. Kepra has worked the best for us also, but those meds don't REALLY work . They are made for kids with normal brains that have seizures, not for kids like ours whose brains were made wrong from conception. I am leaving for Colorado this week, and we are trying Charlotte's Web . I can't just sit back and watch him seize and sleep all day. (Although the giggle seizures are adorable in a way ) . The doctors don't know much, especially about the kinds of seizures our kids have, since they are different from other kids. You may want to start doing your research on medical marijuana. Start with the CNN series called 'Weed' . You can find it on Utube . God bless, and hang in there. Oh yes, Ben's blog is at mechellesutton.blogspot.com . You can find it through Google

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