Another Fabulous Week

We've had another fabulous week round these parts. On Monday (a week ago), we had an appointment with Jaisal's pulmonologist and he is thrilled with Jaisal's progress. Assessing diaphragm movement is an inexact science, well unless you use an ultrasound guided by radioactive dye which we are not interested in, so the pulmonologist's diagnosis was based primarily on physical observation, the prior ultrasound, and the fact that Jaisal has been growing like a weed. He said that when you chart Jaisal's height and weight lately he's moving up vertically on the growth charts. Jaisal has gained nearly 4 pounds since his post-transplant low and grown over an inch. I love that the little man is growing, although my arms do not feel the same way as he's actually starting to get heavy to hold, which is a problem since one of his favorite words in his limited vocabulary is "up."

Jaisal isn't really speaking as much as he should be and we've been approved for home speech therapy. We hope that will get started soon, but there is a working theory among the developmental specialist and the pulmonologist that some of Jaisal's speech issues could be connected to his respiratory issues. Even before transplant, Jaisal had a tough time breathing since his lungs were crowded by his liver and the fluid in his belly. We suspect that because Jaisal has always had respiratory issues since he started walking that he might not be able to engage in physical activity while maintaining his respiratory status. There are actually a few specialists that focus on the intersect of physical therapy and pulmonology, but we kept hearing one name repeatedly, Mary Massery. She appears to be the "guru" of this field. We scheduled the first available appointment we could get with her. In July. We're going to try to work with someone who has trained with her or learned from her in the interim.

Sir Oliver also is behaving. Our labs from Thursday showed an improvement in all of Jaisal's liver enzymes, with one coming really really close to being normal! Jaisal's prograf level was a tiny bit below therapeutic range, but the doctors are letting it slide until labs next week. Yay for only having to draw blood once a week! (Although we will miss our favorite lab tech Sirai. This week Jaisal didn't even cry when he had the blue tourniquet band put on his arm, only when the needle was inserted and when she applied pressure to stop any lingering bleeding after all was said and done. Sirai knows how to keep the little man as happy as possible.)

That's all from liverland at the moment.