Sunday, January 25, 2015
Watch Out Disney World!
Tyler spent the day with Alice in clinic. Her counts were good and better than we anticipated. Hemoglobin was 11.5. Her liver function tests thankfully dropped drastically. They were outrageously high at our last clinic visit, we think it was due to the positive flu test she had. Viruses do crazy things to lab values. With that said we are keeping a watch on her liver.
Alice doesn't return to clinic until February. The doctors feel confident that she can go four weeks between visits. Hooray!
Today Alice had a follow up with ophthalmology in Riverton. Alice has bits of cataracts in her eyes. She sometimes complains of cloudiness in her eye, thus the cataracts. We have been watching her eyes over the past few years. Thankfully it isn't too much worse than the last time we checked, but could still worsen over time. If so she will need surgery to fix it. Thankfully this is something that is very treatable and shouldn't impair her vision with treatment; steroids and other medications could be the culprit. Also she had some eye issues when she had the chicken pox spread into her right eye, which also might contribute to some of this.
WOW... there are plenty of extra issues that come along with chronic illness...SCID kids are famous for many side issues. Ironically much of this seems to be small stuff up against Chemo and Bone Marrow transplants, GVHD, etc. However, they are big issues still and need attention. We often wonder how skewed our perception of reality has become.
I will say there is nothing wrong with thinking and believing your life is peachier than what it may seem from the outside. Alice has been a great teacher of attitude, she has the best life anyone could ask for. She loves it all; although, the times she does complain are so little, but surely those circumstances naturally deny pleasure.
COMING SOON...Alice will fulfill her long awaited WISH. She and her family will be going to Disney World. It is going to be wonderful! We are ready for a great time and almost wish for it to not come, because then it will be over. But no worries, Tyler will have a great movie of it all and it will be cherished over the years. Stay tuned to see her wish in action.
Love you all,
p.s. I will be honest, I have felt nervous to go to Disney World because I worry Evie or someone will get lost. I plan to put waterproof wrist bands on the little ones with my cell number written in black permanent marker. I am open to any other tips in this matter. :)