Looking Forward….
Posted by jenille610 on November 7, 2008
Today we had Christopher’s clinical appointment. It has been 4 months since we’ve seen Susan’s bright face. Since June, Christopher has gained 2 pounds! He is quite the heffer which pleasantly pleased the nutritionist and Susan. Instead of being 4 pounds lighter than Evan, his twin, Chris is now only a pound difference.
I have been taking Chris in for his biweekly lab draws. Susan is weening Chris off of the Cellcept and we are almost there! Once he’s off Cellcept, he comes off of two other medications. Wow! To think last year, we were trying to remember all 15 medications. This is too surreal.
At the appointment, my burning question was what’s next? Long term, we will eventually be scheduling clinic appointments every year. We’re not there yet but soon enough – right now it’s at 4-6 months. Unfortunately, Christopher will be on Prograf forever and 4-6 week blood draws. I’m not too worried because Christopher has stopped crying when they draw blood. Given his phlebotomist, Tina, can’t retire forever because I won’t let her (she is THE best), blood draws are a norm for Christopher now. He is such a brave boy.
Susan warned me about what would initiate an admit to 6Long and I will try my best to keep him away from the infections that would deem it. His immune system is weakened due to his meds so a live vaccine to something like chicken pox is a no-no. Mama Hen has a lot to do in the coming years!
I left our appointment beaming. Great visit, flawless blood draw….We can only look forward now.
