Tuesday, June 1, 2010

Mitochondrial follow up

Reagan struggled last night in the sleep department. I woke a few times and saw her laying in bed wide awake. I have no clue how much sleep she actually got. When I went to pick her up she was all giggles. Unfortunately something about going from laying down all night to being upright tends to trigger her nausea and she threw up first thing. Poor girl. I hate that she has to wake up to that. She was a happy camper nonetheless. No nurse today. They haven't found a steady Tues/Thurs nurse yet so we've just had people filling in, apparently no one wanted to work the day after Memorial Day, so we were nurseless. Mike took off this morning to accompany us to an appt with the mitochondrial doctor. It was a pretty pointless visit. She basically just said that everything looks fine. Reagan's MRI didn't show anything that would point to a specific mitochondrial disorder and neither did her genetic testing. So still no answers. No clue on inheritance and it may be another year or two before it's even worth testing again (you have to wait for new tests to become available). Our best bet is to get the geneticist over at TCH to include Reagan in his study...and he was hesitant to make any guarantees. The mito doc did mention that Reagan's ammonia levels were borderline high the last time they checked. She said that high ammonia can cause irritability and developmental delay. And really high levels can make someone sleep...nonstop (kind of like what Reagan does every now and then when she sleeps for an entire day). So we had her blood drawn today and then next time she's super sleepy like that, we'll take her in and get it checked again. If they find that she has consistently high ammonia levels, they will put her on a daily dose of a vitamin, L-arginine. Reagan was so funny, she giggled nonstop during the appt, the doctor could barely talk over her! For the blood draw she was a pro, didn't even wince when she was stuck. When we got home she was tired and took a nap, sleeping through vision therapy. She woke in time for her PT and did a great job. She wasn't as rolly polly today...although this morning she did roll the other way for the first time. During therapy she held her head really well, that is until we put her in the stander, then she just kept leaning her head forward. We're still waiting on the new stander. No word on whether or not it's even been approved. It's ridiculous that it takes so much time. Please continue to keep Reagan in your prayers...she needs some sleep to get over this bug she's fighting!


Some pics from last Friday...



3 comments:

Heather said...

Would you look at that beautiful hair?She looks like a living doll!

Hoping everyone sleeps better tonight and just think,when you awake you can make yourself some of that "yummy" breakfast you were telling me about!

Love to you all.

Jackson's Blog said...

So excited about all the progress Reagan is making developmentally. She looked so good when I saw her and I am so happy for that sweet girl! She is so cute!

Jamie said...

OMG! Put her in a Kimono with those pretty braids!! Oh good things to come Miss Reagan! Good things. keep faith mama!
:)