He is looking like his old self and seems happy. He has lost the weight from the steroids and is much more active...sometimes too active for his condition.
We had good news last week-his hemoglobin level went up! It's been over two weeks since his last blood transfusion, but because he is spitting out his one and only REALLY important medicine, it's started to drop again! We've tried everything. Any one of you reading this that has seen it, knows we have tried EVERYTHING.
If he would take this medicine we would be seeing better results-meaning the treatment is working. His white blood cells are up on their own without medicine and now with his hemoglobin responding, we have so much hope! We also have hope his platelets are next...if he will take this medicine!!!
It's probably the worst tasting medicine you've ever tasted and he begins to cry with anticipation. As soon as it goes in, he spits it out and because his platelets are so low, his mouth bleeds from forcing it in! I try everything I can to avoid being the person to do it-it's very disturbing as a parent to have to do it, but I know it's to save his life!
If this one little thing could change, I think we would be in such a different place with his health. I want him to go swimming this summer-so pray he takes this medicine so his tube can come out! I envision his little feet in the sand this summer leaping into the ocean during our trip to Florida! I feel like it will be a sign we made it through this horrible experience and a time to embark on new adventures like a normal family.
Luckily we've had great days to be outside and let them explore! The neighbors have a golf cart that is very entertaining!
This is when I LOVE living in the country. They run around outside, use the yard as a bathroom and never worry about anyone around to see it. On Monday they decided to get wet and and have some fun.
Today, Mack got more platelets and is going to need blood in a few days. It's not over, but life feels more relaxed these days. They are ready for warm weather and so am I.