Day +42 - The Turtles Are Here!

They've been advertising and teasing us for months. Signs all over the hospital saying, "The Turtles Are Coming!" Nothing more. I thought it was an advertisement for Comcast. Turns out, the hospital has a fundraiser where you can sponsor a turtle for a $30 donation. Today was a full day of turtle races. Endless heats of turtles trying to decide whether or not they want to race. Kids everywhere. Lots of super heroes showed up. We saw batman and robin, wonder woman, and the green lantern. There were others as well, I just didn't see them. It was quite a festival, held in the courtyard between the main hospital and the clinics. We got to watch from our window in the clinic. There were lots and lots of turtles racing, so hopefully they made a ton of money.

Oh, the special in the cafeteria tonight is turtle soup. ;)

Gracie had her +42 day appointment today. We were mistaken about seeing the big docs (Orchard & Tolar) today. We are scheduled to see Dr. Orchard on Monday at 8:00 AM. We will see Dr. Tolar on Gracie's birthday, July 11th! Today was important because they drew blood for Gracie's second engraftment test (you may recall she was 100% engrafted with donor cells after 22 days). We won't get the results for several days, but we're praying that the donor cells are still dominating the cell growth in her body.

Her lab results continue to be phenomenal. Her white count was 9.3 today! We don't have the ANC numbers yet. Because we are now outpatient, and those results take more time, we don't get them until our next visit. Her kidney function results are also great (creatinine clearance was 0.34).

We expected Gracie to need an infusion of platelets today because her last test result was pretty low. She didn't! We were shocked to find the result higher this time, which means she might be creating her own platelets now! If Gracie is creating her own nucleated red blood cells and her own platelets (in addition to white blood cells), that means her bone marrow is once again working. That's pretty cool, eh? The engraftment results the we receive over time will tell us whether the donor cells or the original cells are driving the cell growth.

Overall Gracie has been doing great. Over the last couple of days she has been so pleasant. She's taking her oral meds like a champ, and we're all getting acclimated to the demanding meds schedule. Gracie was so good during her exam today. It's almost like she is ok with all of the poking, prodding, and manipulating now.... she's at peace with the lifestyle she's living and just goes with the flow. She's cool as a cucumber. :)

Today we ran into Chance and his family who are back for a few days for follow up testing. He's so cute and fuzzy. One of the anti-rejection meds that these kids take causes them to grow hair like a 40 year old man. It's funny to think of a 1 year old with a hairy chest, but I guessing Gracie will have one relatively soon. Hmm. Maybe I need to take some of that. :)

We also saw Rylie very briefly in the clinic. It's so nice to know that all of out little Hurler family have graduated from the hospital to the clinic setting. We also got to meet Lauren and her mom (author of the beautiful letter to an anonymous umbilical cord donor - link is on the right) who are at the RMH for their 1 year follow-up. Lauren was so adorable, running around all over the place. It was great to meet them!

We're very proud of Gracie. She's so strong and she's doing very very well. Thanks (as always) for the many prayers and well wishes!