We are headed to Denver today to follow up with the oncologist. Jonathan finished chemo on Tuesday morning. We start again in a few weeks. We will check his blood counts today. If they are still high enough we will go ahead with the sinus surgery on Monday. This surgery is essential for Jonathan. Each time he gets another infection his body goes into crisis. Please pray that we can do the surgery.
Yesterday we saw the endocrinologist. He decided we will stop the anti-puberty shots and let Jon naturally progress into puberty now. My understanding is that we are hopeful he will grow at least a little if he goes into puberty. This is hard for me to swallow. He is growth hormone deficient. Without growth hormone, he is not growing at all. We were holding off puberty in hopes of doing growth hormone treatment so he could reach maximum growth potential. But now, he will not be able to have treatment for a long time, if ever. While such a small thing in light of all that is going on, it kind of felt like one more option gone. Kind of hit me like one more sign that he is not getting better. My perspective of course right now if off and quite sensitive.
Jon has also lost over 10 pounds in the past 3 weeks. He just isn't eating. I am so thankful for out lovely g-tube! I am thinking I am going to be mixing up some nutrients to pour down that thing.
Got to run get ready to go. I will update once I get back.