Dear John Paul,
Big news today....MD Model Waiver program approved 20 hours a day 7 days a week of nursing care. Everyone was preparing me for far less so I will happily chalk this up to a miracle. You have so many people praying for all of your needs that I have no doubt their prayers were heard. Tomorrow, you will officially be "on the waiver" and switch to our 3rd nursing agency....so the up all night training new nurses routine resumes after tonight as well. Now we have to pray that your guardian angel is permitted to take the form of an amazing nurse....or, even better, four nurses.
On Monday, we went to Children's for a GI/nutritionist check-up. You did great and weighed in at a wopping 17.5 lbs!!! They even weighed you twice just to be sure. Your big brother Ben, who will be 2 very soon weighs 21 lbs so in another month I won't be shocked if you have caught up with him!
We also popped by the NICU for a visit a several of your favorite nurses were thrilled to see you and how well you were doing. We also bumped into one of the doctors who was very pessimistic about your prognosis and had even suggested not giving you a G-tube to feed you. She was amazed at how well you are doing. We told her about your progress and the study drugs...we hope the next time she diagnoses someone with SMA, she offers a little more hope. We are so grateful that early in our journey, we were put in touch with so many great families who are fighting for their children.
Your dad and I are constantly thinking about how we can best give you stimulation given your lack of ability to move...your uncle Alex came up with the great idea of setting up a fish tank for you to watch....I thought this was brilliant! I have to admit....with the exception of my children, I'm not very good at keeping other living things....well...alive. But I will definitely try because I think you would really love some goldfish at least for starters!
Love you so,