Day +46- Just hanging out!

Another great day for Gracie. We had the day off from clinic today so I have no numbers to share, but all in all, we had a good day. Late this morning, Mommy and Gracie took a walk so that Noni (God bless her) could give our room at the RMH a good cleaning. So, the rules are that if a room is being cleaned (vaccuumed, dusted, spraying cleaner, etc.), Gracie cannot be in it. We also have to wait an hour or so to let all the dust and particles settle back down. So Gracie and I enjoyed a long leisurely walk, shopping at the Gopher Store (FYI-the mascot of the University of Minnesota is Goldy the Gopher) for our cousins Van and Nuvy who will be visiting us next week, and to Orange Julius so that Mommy could have her fix. :)

Tomorrow we go into the clinic to have Gracie's Cyclospoin levels checked. Cyclosporin is probably the most important drug that Gracie is taking- its the one that combats GVHD (Graft-Versus-Host Disease). The docs have been playing with the dosage of this drug for a little while because Gracie's levels has been consistently on the slightly low side. Not low enough to be really concerned, but we're really just looking to get into the normal range. Here's hoping that the last adjustment took care of that. We should find out tomorrow.

We're also looking to find out about our engraftment status this week. Tomorrow might be too early to find out, but I'm definitely going to ask about it. Keep us in your prayers for good results.

As promised... I have a few pics of our favorite baldy hanging out in our room at the RMH. sorry for the sour puss, she was not in the mood for the paparrazzi. But she did look cute in her Uncle Mack duds. As it turns out, Gracie- our 11 month old- has to wear size 24 month clothes due to the water retention. I had no idea that she would bloat so much, so naturally, I was unprepared and only brought clothes for her up to 12 months. Uncle Mack did a quick Target run and came back with som cute and comfortable clothes for our fluffy little Peanut. I really loved this outfit on her. :)







Also, please pray for our transplant friends- Rylie (our special Hurler friend) is back in the hospital and having breathing troubles. We have another friend, Mario, whose transplant didn't take, and now his family hopes that the Chemo treatment prior to transplant has rid his cells of ALD. Maddie, an 8 year old with Fanconi Anemia is back in the hospital fighting either an infection or GVHD, and Mara- who has MPS VI is having a terrible time recovering from her transplant. :( Ask God to envelope each of our friends and their families with his healing grace.