New name, betcha can't guess who
 

Hi guys! Figured it was time to change my name. Betcha can't guess who I "was"! Hard one huh?

Hope everyone is well. A little update on us. Jake is doing well. He had stopped eating again so we weaned the Felbatol. We're just gonna have to accept his seizure level as it is. He still has more than 100 jerks a day, but they aren't "that" bad as far as seizures go.... (see the section on Katie!) and it's just not worth keeping on putting him on things that make him starve.

He has started back to school and is in the 4th grade. He stills likes school, thank goodness.

Katie is doing ok. Her delays are becoming more obvious and the doc is sending us to be eval-ed for a special needs stroller and high chair. She said the Panda highlow but eh, I don't like the look.

She got her immunizations Monday 2 weeks ago (MMR, Hib, Varicella) and that night she had a seizure. It lasted about 3 minutes and she wasn't breathing for 2 minutes. She turned dark blue and scared the crap out of us. Then last Monday, she got a cold and had another seizure that lasted 5 minutes and she stopped breathing for about 1 minute. The neuro had called in diastat after that first Monday but when she started seizing again, I freaked out and couldn't get the flippin diastat tube thingy open and by the time I got the directions out and figured it out, she had stopped. This makes a total of 3 seizures. She had an EEG last week, but we don't have the results yet.

Regardless, I'm not willing to start meds yet if it's just febrile. She's still on her shots and her MMA levels have come down, but it's not a cure, she's not catching up on her delays. I had hoped she would show more improvements if her levels came down. But it's all good as my brother says. :

I started a blog too. http://theashleykids.blogspot.com/


http://i82.photobucket.com/albums/j2...nks/kbday6.jpg
http://i82.photobucket.com/albums/j2...nks/tongue.jpg

Holey Macaroni, ((((((Micky)))))) :eek:

Long-time, no read!! Long-long-long time :D

I can't believe how big Jake and Katie have gotten. I guess they grow even if I'm not watching :p

I'm sorry to hear that Katie seems to be following the path of Jake. I think I said once before that one good thing is that you're more aware now of what to watch for and can catch 'things' sooner. Maybe that earlier intervention plus more competence in the medical community will make a difference for Katie.

It's strange that you've got two kids with basically the same thing and they can't figure out if it's genetic. Certainly seems to be, doesn't it.

I just learned something from you today -- I didn't know that you could set up a free store with Activa. I had a store on eBay, but, you must know they've been futzing with the store searches 'cause the stores were killing the auctions. So, I had to close my store -- all the international traffic just vanished. I've opened another store a couple of weeks ago -- no sales so far, but, I've got my fingers crossed. Got to ramp up my SEO and my marketing.

I wanted to open another store similar to the one that I have but more 'country' oriented -- too expensive right now, still recovering from feeBay. A free Auctiva one might work though -- HHHMMMMMM!!

Give your kids BIG HUGS from "The Moose". Keep a couple for yourself and your hubby and for Megs, too.

Hugs (and love).

Barbara

Micky, I just love the pictures of Katie. She is such a beautiful little girl. Thank you for sharing her pictures with us.

Carrie

nice to see you Mickey, glad you came along. Katie's such a cutie. :D
I've missed you and your crew.
cj :D

Love the new pix of Katie! She is just plain gorgeous!

Glad to see you here, Mickey. We've missed you and your adorable crew!

(((hugs)))

Hey!

Katie looks like such a spolied little doll! Betcha can't help but spoil her!

I hated to read that she had has more, definite seizures :( that breaks my heart for her and for you guys.