Sweet baby is getting so big! We are 30 days post transplant and we are on the road to getting discharged, probably in 2 maybe 3 weeks. We will stay in the Ronald McDonald House for 2-3 months after we are discharged so William can be close to his doctors and we can make sure he's ready before we head back to Utah (and have all the adaptive equipment in hand). Papa Ron and Gogo Marcia got here the day Megan and Sara left. We are almost completely off of needing pain medication, he isn't needing blood or platelets as often, and he's much more alert. I missed him; he had been "out of it" when on pain meds and sedatives to keep him comfortable, its nice to see his eyes shine once again!! He is moving his arms and legs a little bit (which gives us a few more options when he is ready for a communication device), and his eyes speak louder than any words could. He is eating a tiny bit orally but he will get all of his needed nutrition through his g-tube indefinitely. I hope he can take food orally (swallowing is affected by Krabbe Disease being a motor skill) because eating is delightful!! 😊
We are not sure what William will be able/not able to do at this point. The doctors are certain he will never walk, possibly never talk and will need care 24/7 indefinitely. Robert and I are holding very high standards for our little boy and will never give up trying to teach him those things and not letting the doctors tell us what he can and cannot do. Simple as that. I did that while I was a classroom teacher, too; you are going to try your hardest and never give up, regardless of what a doctor or specialist said you can or cannot do.
William will keep his vision, hearing and receptive language skills as a result of the transplant. Life expectancy is still a little gray; however, of the transplants that have been completed, all are still living the oldest being 18 years old.
William's doctors and nurses rock!!!!
Our motto: never give up, especially on the ones you love. EVER.