Grant's Journey

Happy Ten Months Hercules! Grant has been cruising along in his development this last month. He is finally starting to bear a little bit of weight in his legs before he buckles. He is learning that his arms can do more than just flop to his sides (his favorite place to leave them). Our OT brought this crazy crawling contraption last week to help Grant learn that he can get motion while on his tummy. He hangs suspended in a nifty halter and the supporting frame is on wheels allowing him to move with very little effort. So far, he mostly just pushes backwards, but it is a start! His faces are so funny to watch! We did move ahead this week with our new feeding plan. It has been a very long yucky week. On Tuesday, we went to our local hospital and under continuous X ray, we moved his tube out of his intestines and pulled it back to his stomach. It was traumatic for me because they moved so slow and Grant just screamed at them. We then had to camp out at the pediatricians office for the aft...

Hello Friends! We had a whirlwind day yesterday. Grant had a cardiology checkup with Dr. Williams and I was delighted with the great news. His heart function looks good, his ECG showed normal rhythms, sats came in at 86 on room air, and we even discontinued Grant's Lasix (a diuretic that helps to keep extra fluid from building up in his chest)! I really wondered if he would ever get off Lasix so that was especially exciting! That brings Grant down to only 5 meds 2x a day! I went to the appointment armed and ready to discuss our pediatricians concerns of NJ tube feeds, a possible G tube, and his growth that had stalled for 7 weeks. Again, everything that I heard resonated with what I felt was right. Dr. Williams was delighted with Grant's size (yesterday he was a whopping 18 lbs 4 oz! Though this still placed him around the 12th percentile) and said that he looked "HUGE" for a single ventricle kiddo! He gave me some great info to take back to our pediatrician that basi...