Change of Plans

Our family heart attacked and decorated our house for Jacob's welcome home.

Ethan's so happy to have his little brother home again.

Jacob is NG tube-free!

In our last post, Josh mentioned that the doctors had requested Jacob's donor in order to give Jacob a boost of cells to help strengthen his graft. Last Friday, Jacob's NBT test (the test that indicates how protected he is against CGD related infections) came back at 35%. This is great news! His past three NBT test results have gone from 29% to 30% to 35%. We haven't heard what yesterday's results are yet, but we are hoping that his score is still going up or at the very least, holding steady. According to the doctors, a person only needs about 12% functionality to be healthy, so 35% would be great! Because of this encouraging news, the doctors have decided to put a hold on readmitting Jacob for his boost of donor cells for now, as long as his NBT score holds steady, despite his extremely low 1.55% donor myeloid cells from his last chimerism test. Apparently, the NBT test result is more significant to Jacob's disease than the chimerism results. So, that is our biggest news.

I also wanted to mention that on Thursday, Jacob's NG tube clogged so badly that we couldn't push anything through it. Since it was useless and knowing Jacob had a checkup the next day and could get another tube, we went ahead and pulled it out. Since Jacob did such a good job taking his medicines orally on Thursday, the doctor said to go ahead and give Jacob a chance to start eating and drinking again. If he can eat, drink, and take medicine, then he no longer needs the nose tube. I'm happy to say that he has been doing wonderfully with these three tasks. Whenever he gives me a hard time with his medicine, I offer to put his nose tube back in, and that quickly resolves the problem. :) Ethan has also been a great helper when Jacob chooses him to administer medicine. Who would have thought!

Ethan starts kindergarten in two days! Last year we kept him in preschool for a second year to give him a chance to mature a little more, and now I feel like he is more than ready for his school experience. He turns 6 in October, so he will probably be the oldest kid in his class, which will hopefully give him a little bit of an advantage throughout his school years.