As I said previously, the exclusion of biliary atresia means we have to keep on working to figure out what is going on with her liver. We are going to head back to Ann Arbor tomorrow for more testing. This time they're trying to confirm or exclude Alagille Syndrome (info at http://ghr.nlm.nih.gov/condition=alagillesyndrome). Specifically, she will be seeing a pediatric opthamologist, have an echocardiogram, get more blood drawn for genetic screening and have an x-ray to look at her spine. Alagilles isn't something you can test for on its own... you have to look for the symptoms/characteristics and diagnose or exclude it that way. We should have all of the results except for part of the lab ones back on Monday and Dr. Bhatt is supposed to call then. Our next appointment with her isn't until March 5, barring any really funky results from any of tomorrow's testing.
Alagilles isn't urgent (at least not like biliary atresia would have been). We could have waited two weeks to get this next round of testing done. We opted to get it done tomorrow though, as the waiting and not knowing is hard.
Claire will be eight weeks old on Saturday. She's been through so much in her short life. I was thinking about it in numbers while I was in Ann Arbor. Countless heel pokes (about 14, to be exact), five blood draws for the liver function panel (these come from the arm and mean three tubes of blood each time), one phlebotomist in Midland who can actually get blood from her arm without blowing veins, three ultrasounds, one HIDA scan, one liver biopsy with two passes, one catheterization, one urine collection bag, one night in U of M hospital, two trips to Ann Arbor and back, and a partridge in a pear tree. But really...she's had a really long eight weeks.
So many people have shown us love and support since this all started. Thank you all so much. I've been told that the kids' teachers have made a special point to check in with them to see how they're doing... thank you each so much for that. I worry about how all of this affects Josh, Meghan and Lauren. It's nice to know that the other people they spend most of their time with are taking extra special care of them too. It's also been nice to hear from friends and family members we haven't heard from in a while too. When you need them most, true friends and family step up to the plate. Thank you all.
Deanna
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Have a safe trip to ann Arbor!
I had the same concerns about how the other kids are affected by something like this. But now I believe that they are much more reselient than us adults. Even David - who initially had a hard time and thought everyone else in the world had a brain tumor too - is doing great. I remember the day he used sidewalk chalk to draw brain tumors in the driveway...not fun! But even though it affected him and he learned things I wish a 5-year-old would not have to know, he is doing great.
Sorry for rambling...just wanted to say that I think Josh, Meghan and Lauren will be fine. They are great kids and have awesome parents! And as long as they feel loved, they will do okay!
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