Monday, June 28, 2010

Spoke too soon....

Asa is not all better. It seems this is an ever morphing think, each day it is different! The fever is still gone! That is important! With all the seizure talk freaking me out, the last thing I need is a fever causing seizures. This happens a lot with mito kids. I can deal with this grumpiness but I want the fever gone! He was actually happier today (I'm told) but when I got home from my day out his eyes were red and watery. He coughed a time or two and sneezed some. He just looked kinda droopy. He was smiling and even reached for Cade and let Cade carry him around a little while! So he isn't as ill tempered but still not up to par.

Last weekend there was a big mito symposium in Arizona. Last year it was in DC and Barry and I were gonna go but we got in to see Dr. K for the same week so we picked Dr. K. This year it was just too far away and it was right after we saw Dr. K so it would have been too much traveling. Next year it is in Chicago and I'm going!!! I'm saving my pennies now!!! All the experts are there and tons of parents. They organize it so you mingle and meet families from your area. While we couldn't go this year, a sweet mito mom from Memphis did get to go. Yesterday we had a lunch and she gave the other 3 of us the rundown on the meetings! We always have a great time when we get together and these meetings go longer and longer and longer!! We've learned though to start earlier in the day so it doesn't get too late on us!! I think next time we should start at sunrise!!

I won't bore you with all the details or conversations. And despite our best efforts, we didn't cure mito in our marathon lunch date. For me though, my spirits were lifted and my worries were eased for a while. I really don't know where I'd be today without the support of other mito families, both online and in real life! I asked Dr. K about a new supplement for Asa. She told me to try it and when I asked about the dosing she said "I have no idea, you'd get more info from other families than from me"! WOW! A doctor who admits they don't know it all and then recognized that we families have to stick together!! I know I've said it a million times on here but if it wasn't for other families sharing their lives I don't think we'd have a diagnosis and certainly not one so early in Asa's life! It can be tough to pour it all out in a blog or message board but I hope I can help another family!

So thank you to my real life mito moms and all those precious online friends!!!

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