Monday, March 15, 2010
1 down...
So today we had the appointment with the neurologist and he was a good guy. Okay well that's all on that front. No seriously, there was nothing learned from that appointment as of right now. They do feel she needs to be put on the mito cocktail as soon as we return for a minimum of 6 months. He also told me, as I already knew, that a lot of children do not respond to the cocktail at all. They are going to add a shyt load of labs to her list for when she's under on Friday and be in touch while we are still here. The good news is though that he was kind and did appear interested in her case.
Tomorrow she will be having the ultrasound of her diaphragm and then her HRCT. Both important to see what's going on with these lungs of hers. It's scary and all that but needed to be done like yesterday. On Wed. we meet with Dr. Young again but before that she's having her first PFT done so we will be meeting with Dr. Young with all that information so that is a good thing fo-sur.
She was wired after sleeping on the plane yesterday night and didn't fall asleep till after 1 a.m. Cincy time and was a p.i.a. to wake up this morning. She's been moody all day but what else can you expect, it's a 4 hour time difference and it shows.
I will update tomorrow night unless something goes south.
Subscribe to:
Post Comments (Atom)
1 comment:
LOL, ok I just had to laugh at the last picture :) that sweet sister fun.
Sorry about your little crankster, but how can we blame her. She is such a little trooper about everything and truly amazing.
I hope the Mito cocktail helps her energy. That seems to be the one thing you may see a change in. I just dont know if we see any difference, but dont care because its really the only thing we can offer. Even if you dont see any change, it still could be helping on the inside.
Thanks for the update, always praying for you. Give that brave girl a huge squeeze for me an Jack-xoxox
Post a Comment