Sir Oliver Takes a Test

Yesterdays labs were the big ones. Well to me at least. It was the first time we were checking Jaisal's liver function since withdrawing the Cellcept (immune suppressant). We'd finally know how Sir Oliver was feeling due to the changed meds.

Sunday labs are good and bad. I love that the lab itself is usually pretty empty and both Kirk and I can go thereby avoiding paying for parking (someday I'll finish my partial post about the costs of having a medically complex child), BUT it also means clinic is closed and we can't get lab results right away (although these days we can't even get lab results right away during the week because both nurse practitioners quit the transplant team and no replacements have started yet).  Thankfully our awesome pediatrician always puts her nurses on alert for our call when we get weekend labs. The practice's policy is that labs aren't shared with parents until a doctor reviews them so that the parents aren't surprised by what they're hearing. Our pediatrician has informed the nurses that they don't have to follow that protocol with us. That we likely can interpret these labs better than anyone on staff and also we know that the liver doctors are going to be the ones that interpret these numbers not anyone on staff at the pediatrician's office. That little bit of consideration means so much to us. It saves me a great deal of anguish rather than having to wait another 24-48 hours to hear the results of the tests.

What? Oh you want me to get to the point? Fine, but at least now you understand some of the agony I experience every time we get labs. :)

All of Jaisal's numbers look GREAT! Sir Oliver's liver numbers are really stable. Jaisal's hemoglobin and magnesium have gone up ever so slightly so we'll hope that trend continues. Also his ANC doubled! Woo hoo! He still can't participate in any group activities until his ANC crosses 1,000, but I feel like we'll hit that number this upcoming weekend. Sometimes I don't even realize I am holding my breath as the nurses read me Jaisal's numbers, but this time I let out a huge audible sigh of relief.

Despite his bubble boy status, little man continues to have fun. The unseasonably warm weather has allowed him to get outdoors a bunch, but he also manages to entertain himself indoors.

"Mummy, no one wears pants while riding a horse. Why don't you know that?"

Bubbles! Nearly as sure fire of a hit as the iPad. (Sorry for the blurriness, Kirk wasn't really trying to capture a picture of Jaisal but of the really big bubble he was able to blow. Yes, honey it is impressive.)