Day +65
WBC 18.2
Good morning. Please check out our new Acknowledgments area in the "How Can I Help?" section. Not only can you learn about upcoming events for Max, you can look back on past events, and you may even spot your name in a Thank You from us. We've tried to remember everyone and everything, but thanks to all of you, that is so hard to do! So many of you are helping us in so many ways that with all that is going on, please forgive us for forgetting anything.The computer went down late last night so no update. But two really good things happened yesterday:
First, the morning EEG showed Max's seizures had stopped. The dosages for the two-anti-seizure meds finally reached therapeutic levels and did their job. They want to leave Max like this for the weekend, and re-check on Monday. Who knows what happens after that. Since they don't know what is causing the seizures, it's going to be hard to know when things can be turned down. They told us he will probably be on these medications as long as he's on his major med (like CSA), which may be as long as a year. The effect of the seizures long-term is, of course, unknown at this time. His MRI did not show acute areas of damage or bleeding, so the hope is that this is more consistent with epileptic behavior - these seizures are a frightening, but controllable, nuisance. They can come back at any time if his levels drop, so this is going to be a long process. This morning, in fact, his hands are tremoring again, so his levels may be down.
Second, our wonderful care partners, Marsha & Pete came by to play with Grace and it turned out the Ronald McDonald House was having a field trip to the movies for "Good Boy!" the new talking dogs from outer space movie. Marsha jumped in the van with about 8 other kids. Grampa Chick watched Max at the hospital and Margaret and I had our first date in about a month. Marsha had picked up lunch for us, which was great, and then we promptly crashed into the snuggliest, deepest nap. That's what happens when you're about 75 days behind in sleep. Grace had a great time with her friends, and it was her first field trip. All the kids had pop and popcorn and Grace said her favorite part was "when the dogs were talking." Hmmmm. Maybe it was a little over her head. Oh well, it's no Finding Nemo.
In other Max news, he's had a fever for a couple of days now and his white cell count has been rising so he may be fighting an infection. He's on all kinds of antibiotics so hopefully this will break. They don't think it's in his lungs or in his brain, so that's good.
Please continue to check out all of Max's Hurler buddies' pages, especially Sophie who's fighting GVHD and Yasmine who's fighting CMV. Also make sure you congratulate Anthony (Tony the Tigre) who now has his new cells. We've been told many times that these Hurler kids can be super-resilient, and their strength can be remarkable. Max has certainly proved that.
Have a great weekend,
--mike
Good morning. Please check out our new Acknowledgments area in the "How Can I Help?" section. Not only can you learn about upcoming events for Max, you can look back on past events, and you may even spot your name in a Thank You from us. We've tried to remember everyone and everything, but thanks to all of you, that is so hard to do! So many of you are helping us in so many ways that with all that is going on, please forgive us for forgetting anything.The computer went down late last night so no update. But two really good things happened yesterday:
First, the morning EEG showed Max's seizures had stopped. The dosages for the two-anti-seizure meds finally reached therapeutic levels and did their job. They want to leave Max like this for the weekend, and re-check on Monday. Who knows what happens after that. Since they don't know what is causing the seizures, it's going to be hard to know when things can be turned down. They told us he will probably be on these medications as long as he's on his major med (like CSA), which may be as long as a year. The effect of the seizures long-term is, of course, unknown at this time. His MRI did not show acute areas of damage or bleeding, so the hope is that this is more consistent with epileptic behavior - these seizures are a frightening, but controllable, nuisance. They can come back at any time if his levels drop, so this is going to be a long process. This morning, in fact, his hands are tremoring again, so his levels may be down.
Second, our wonderful care partners, Marsha & Pete came by to play with Grace and it turned out the Ronald McDonald House was having a field trip to the movies for "Good Boy!" the new talking dogs from outer space movie. Marsha jumped in the van with about 8 other kids. Grampa Chick watched Max at the hospital and Margaret and I had our first date in about a month. Marsha had picked up lunch for us, which was great, and then we promptly crashed into the snuggliest, deepest nap. That's what happens when you're about 75 days behind in sleep. Grace had a great time with her friends, and it was her first field trip. All the kids had pop and popcorn and Grace said her favorite part was "when the dogs were talking." Hmmmm. Maybe it was a little over her head. Oh well, it's no Finding Nemo.
In other Max news, he's had a fever for a couple of days now and his white cell count has been rising so he may be fighting an infection. He's on all kinds of antibiotics so hopefully this will break. They don't think it's in his lungs or in his brain, so that's good.
Please continue to check out all of Max's Hurler buddies' pages, especially Sophie who's fighting GVHD and Yasmine who's fighting CMV. Also make sure you congratulate Anthony (Tony the Tigre) who now has his new cells. We've been told many times that these Hurler kids can be super-resilient, and their strength can be remarkable. Max has certainly proved that.
Have a great weekend,
--mike
posted by Mike Ciacciarelli
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