Sunday, June 21, 2009

Moving on

Reagan woke up a few times last night, and one time she needed her Daddy to get back to sleep. It just amazes me sometimes how she'll cry and fuss nonstop with me and then I hand her off to Mike and she just snuggles up and goes to sleep. Such a little turkey...this girl loves her Daddy! I wish I could say he had a super Happy Father's Day but after getting back from an afternoon of golf, he was hit with the symptoms of heat exhaustion. This hot, humid weather is brutal. Poor thing. He didn't even get to enjoy his Father's Day ribeye (so you know he was feeling lousy)! Before he left for golf, we did stop by a couple open houses. They were both pretty nice, but I don't think either were the house for us. I know we have a short amount of time to look, but this time we want to make sure we get everything we want and need this time around. Tomorrow the people that have an option our house are doing their inspection and we're hoping that everything goes smoothly. We've lowered our price so much over the last 7 months we're not really going to make anything on the sale of our house, so we're already at our bottom price. Frustrating, but it's time for us to move on. Speaking of moving on, I'm calling the neurologist to talk with him about our recent findings in Detroit and to see what he thinks about the effectiveness of the Keppra. If all of those twitches she's having are really seizures (like the VEEG indicated), then she's really having upwards of 1000 seizures a day. Scary. We're still planning on adding the Clobazam per Dr. Chugani's recommendation but we probably won't get it until Friday at the earliest. We definitely need to make some changes. Something just has to work for this little one! Please keep her in your prayers.

3 comments:

Heather said...

So sorry to hear about Mike .. poor guy.I know the "one" will show up ... soon.the perfect "one".As for seizures,I continue to pray for something to give.I just know it will.I faithfully know it will.

Anonymous said...

I am just curious...are her twitches like startles, kinda like they do when they are infants? Hudson went through a season of those, just randomly would startle, all through the day, besides his regular seizures. We never tested it, but when I described it to the neuro, I think he may have witnessed them, he said that the central nervous system is so sensitive, and in overdrive, that it is the body reacting to the chaos or unbalance within the central nervous system. Hudson's eventually just went away, not sure how or why, and I now am much more engrossed by these awful tonic seizures I see every day followed by a cluster of spasms...gggrrr....I HATE them ALL...SPASMS, TWITCHES, JERKS, TONIC,CLONIC....Blaahhhh, These babies so don't deserve any of this!
Did Dr. Chugani think there is the possibility of Mito disease? Curious on that too...We got that diagnosis right before we were suppose to go see Chugani, when I got our cause, I emailed Chugani and he said this diagnosis would end the possibility as Hudson being a brain surgery candidate. A part of me wishes his eyes could have just seen Hudson, he is truly an amazing dr, he was my email buddy for a time!
I am grateful, being in Seattle, that we have Saneto, epitologist and leading researcher (1 of 4 in the country) in pediatric mitochondrial disease...God put us right where we needed to be!

Keeping Reagan close in prayer...have a good week!

Hugs~ Deb
www.caringbridge.org/visit/hudson

Shannon said...

We keep Precious Reagan and your family in our prayers. We share such a tough journey with our little ones suffering and becoming exhausted in so many ways just trying to help them. We pray that God hold you in His palm and gives you all the rest and renewal of energy in Him.