~seizure FREE me~

~seizure FREE me~

Sunday, September 19, 2010

Drum roll please

...and now, one down...two to go.


Last day for the zonisamide, No More from here on out!!! He did not have a single reaction...no noticeable change for the worse what so ever...how awesome is that! I just knew that one was pointless. Now we are going to wait about a month and then start going down on the VPA. I'm a little more nervous about this one, but of the last two meds I want him off this one as soon as possible. Lots of nasty side effects with this one and it's making his hair fall out and loose it's beautiful dark red color. So sad. The doctor said that it isn't permanent though, that his hair will grow back again as soon as he gets off the VPA, she doesn't know about the color though. She's never heard of the hair getting lighter, but it's obvious that it has when you look at old pictures and then now. I was even finding white looking hair on his head before we shaved it. We shaved it because he was starting to look like he had a comb over, poor boy. I miss all his beautiful red hair. :(


I ordered The Gluten-Free Almond Flour Cookbook by Elana Amsterdam and I am waiting patiently for it to arrive. Super excited to see what recipes I can adapt from there to make new things for Atty using the almond flour. I tasted a cake that someone made from this cookbook and it was super delicious, if they hadn't used maple syrup for sweetener Atty would have been able to eat it {minus the frosting}! I'm pretty sure I will be able to just use stevia for a sweetener and hopefully have success with many of the recipes. I also found Almond flour online and although it is a big investment {pricey stuff} in the long run it saves money {price per pound goes down} so I contemplating ordering larger quantities. I go through the little bags from the store so fast!

We've decided not to go Trick or Treating this year. I know it's a little early to talk about this, but it is just around the corner already! I don't really like the whole thing anyways and the kids have only gone two or three times, so they are not really to upset about not going. Bubu {my oldest} questioned the idea a little bit, but I reassured him that we would have fun and talked to him a little bit about why it would be hard for Atty and he accepted that. We are going to have a Harvest Party instead. Some close friends are coming over and we've got all sorts of things brewing, idea wise. I've got to come up with some great games and snacks and treats that the whole group will love. I've got to decided if I will make separate things for the rest of the kids to enjoy and then special things for Atty or all the same stuff. It's really hard to make all the same stuff though...Food that Atty can have doesn't always mix well into the over all party food. If I make separate stuff I have to be careful so that Atty won't feel left out. I usually try to make something for Atty that looks close to what the other people are eating so it takes a lot of planning ahead of time. Maybe I should come up with a regular menu and then branch off from there. Apparently I'm brainstorming as I type. We are keeping it a dress up party so that all the kids can wear their costumes {gotta have my pictures!} and I think the kids will have fun passing treats out this year. I've always been the house that passes out items like stickers/crayons/bubbles instead of candy {Yes I am that house} so there won't be any stress for us there. Just having candy in the same room as Atty makes me break out in a cold sweat. It's just too tempting...

Atty has a big multiple appointments at Children's day coming up on the 28th. Hope all goes well. I think we have to do a blood draw again, dreading that. Also have to take at least the baby girl with me if not all of the kids so that will be fun {heavy on the sarcasm}. It sure is nice to walk through the doors with my little red head walking beside me, no helmet, no stroller, not stopping to wipe drool, no grabbing him by the shoulders to steady him...just walking, hand in hand. :)

3 comments:

Lisa said...

YAY!! so happy for you and for Atty. :) Can't believe how much has gone on with you guys.
I'm with you on the trick-or-treating thing. I haven't done it for years. We do pass out candy to kids that come to the house, but other than that, that's it. the history behind the holiday is wicked scary. Each year, I am just so happy when October 31 is over!

Kat said...

Oh that is so amazing! I am so happy for you all! :)
The Harvest Party sounds like a WONDERFUL idea. I bet they don't even miss the trick or treating. :)

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