He doesn't think her MRI is remarkable for MMD, (is sharing information with Stanford and Boston though) but her MRI isn't completely normal either. There is NO evidence of stroke at this point. The vessels he sees on MRI appear stong and healthy. HOWEVER, within the circle of Willis (the main vasular system in the brain) she is missing one vessel on the right side. BUT, the same vessel on the left side has crossed over to the right and seems to be doing what it's supposed to be doing, just over there instead.
He has no explanation for the 3-4 weeks that we saw dramatic right-brain decline (and I brought along letters from the ST about their observations as well.) And said that....sometimes....there can be right-brain malfunction for absolutly no reason at all that we can see on any scan. That sometimes it's just too deep for anyone to actually find. And that it will likely happen again.
That said, we're still doing the angiogram tomorrow. He said if we were looking at MMD, the SPECT scan wouldn't be that important, but since we're now looking at something different, he'd really like to have that done. It can show us brain function problems that won't show up on an MRI. But THAT test was cancelled for tomorrow because they can't do them at the same time/on the same day. We'll probably schedule it a couple weeks out.
We ended up coming home tonight. They decided they didn't need to admit her, and I needed to let Ronald McDonald house know by 4:00. By the time I knew what we were doing it was 4:30. The hotels in the area who have RMH rates were already booked. So, it was pay regular rates of $45/night, or spend the same in gas driving home, then to the clinic and back AGAIN tomorrow morning. I was all ready to get a room because I was wiped but Angela announced, "Moooooooooom! No Pool????" and I realized that was going to be an issue. So we just came home.
We have to be back there at 6:30 tomorrow morning, which means get up at 4:30. Lovely.
She also had to see the pediatrician down there for a pre-op. It was a resident with no DS experience, but he tried very hard. LOL He went out to consult with the ped, then came back and asked when her last Thyroid and CBC work was done. Hmmm...I had no clue. He went back out, then came back and told Angela, "I want you to take this paper to the lab, OK? They're going to need to get a little blood sample."
Angela looked at him like he was an alien, crossed her arms and STUCK HER TONGUE OUT AT HIM!!!!! "I said NO POKES TODAY!!!!! I'm NOT having a POKE!!!" Then refused to look at him again. We left with her trying told bag gigantic crocodile tears. When he said goodbye she stuck her tongue out at him again. LOL
So tomorrow will be another long day. BUT...if all goes according to schedule, her dad is picking her up at my house afterwards and keeping her until Sunday evening.
That means I can take a nap. I'm really needing a nap.
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