December 11, 2011

My, what a busy time of year! And I love it! All of the elfish, Christmasy busy-ness brings me so much joy!

But before recapping the fun, a quick medical report:

Last week I had a check-up with Dr. Wilson, my hematologist/oncologist at St. Louis Children’s Hospital. On the hematologic front, all has been quite consistent. My blood counts have been no better, no worse. And so, we are continuing to decrease my Anakinra injections. I will have a shot every three days for another month or so, and then, if all goes well, I will stop the medication completely. Hopefully, now that I have been following this treatment for a few months, my body will do just fine without it!

Lately my stomach and back pain have been EXTREMELY intense! And we don’t really know how to help it. I have an appointment on April 23 with a doctor in Philadelphia to discuss the possibility of my being treated with ketamine infusions. I have been waiting for this appointment for two years! Dr. Wilson is going to write a letter, though, requesting that my appointment be moved up if there is a cancellation. I have had one prior ketamine infusion, and it went rather horribly. (Albeit, in hindsight, it was fairly humorous as well! There was much singing, and flirting with ambulance drivers, as I recall. Anesthesia and me… Yikes!) But Dr. Schwartzman in Philadelphia is an expert in treating RSD with ketamine, so the hope is that, under his guidance, the infusions may go much more smoothly for me.

Also, some of my genetic HLH testing has come back. And so far, we have no positive results. You may remember that my rheumatological HLH tests were negative as well. The hematologist/oncologist in Cincinnati said that there is a gray area of genetic HLH for which testing is not available. So I suppose that I most likely fall into that category, but I will have to wait and see what the doctors are thinking when we have our next conference call.

And of course my days have been loaded with pre-Christmas wonders! I am working on the final details of my holiday decorating. And, you know me, I have baked way to many Christmas cookies! And I have been planning surprises for my lovely family, the details of which I cannot yet divulge online! Krista, Tim, and Lulu were over yesterday to help with the decorating process. Since Krista got married and moved out of the house, I miss seeing her everyday! But it makes the sister time we do have even more special. So I am about as chipper as any Christmas elf these days! Like everyone else, I seem to get wrapped up in all of the holiday festivities. But in all seriousness, I treasure the blessing of Christ’s birth, the true miracle of this season!

And little Miss Alice Eloise is providing as much fun as always! We took her along to select our Christmas tree, and we had a breakthrough… No puppy carsickness! I simply had to keep her occupied with her beloved Colby Jack cheese throughout the car ride! I call that progress. And next week we will be meeting up with a trainer to discuss a game plan for service dog training! So far Alice and I have only done training on our own, and very successfully, too, as she is such an excellent student. But I am so excited to be working towards our goal of service dog certification! I can’t say enough how crazy I am about my sweet little pup!

I hope all of you are having a very blessed Christmas season!