Hanging out in his bouncy seat.

Hospital hat/bonnet - time for a trip to Old Navy.

Sporty outfit I picked out especially to go see Dr. Boyle.

I feel like I am finally starting to settle in to the move to rehab. Monday thru Wednesday were rough but today was good. I got over there around 10:30. Yes - I slept in. I am in a terribly bad habit of staying up until 1:00 in the morning & then I can't get up at a decent time. I've tried going to bed earlier but then I toss & turn until midnight or 1:00 so I figure I might as well stay up & watch tv or surf the internet.

Grady had an appointment with Dr. Boyle (cardiologist) today at 2:30. Since Dr. Boyle is at the main hospital we had to take him there - which was interesting. Since he is a patient at the rehab hospital, they have to transport him. They assign a nurse to take your child to all of his appointments. Parents can ride along (which I did) if they want to. They were getting him ready to go & my nurse asked if I had a coat & hat & I said no. I know it sounds silly, but I didn't realize that we would be going on trips like this. She said it's ok - the rehab hospital keeps hats & coats there for that reason. She went & got this blue suit to put over his clothes & a blue hat - which was really more like a bonnet (see picture). It had strings to tie it in the front & these little balls at the end of the strings - you can't see it on the picture. Grady looked hilarious! I know it's blue and all, but it looked really girly - and not just girly - Little House on the Prairie girly. It was so funny. I made sure to take it off as soon as we got into the hospital. There was no way I was going to let Dr. Boyle see him in it. Grady had one of those gowns on at rehab & I purposely changed him into a sporty outfit because I knew that Dr. Boyle would tease me if he was wearing anything girly. He had joked with Ken before his transplant about getting him a girl heart and changing his name to Grady Emily. So - we finally made it to the hospital in the rehab's van. The transport nurse is in charge of checking him in for his appointment & making future appointments. She also charts everything & takes care of any prescriptions or changes to Grady's orders. Grady had an echo and an EKG. A doctor came to examine him (don't remember his name) along with a medical student (don't remember his name either), our social worker, Mary (I remember her name - aren't you proud) & then the transplant nurse Colleen (we love her) came as well. Finally, Dr. Boyle arrived. He was very excited to see Grady. He held him with one arm & listened to his chest with his stethescope in the other hand. I was afraid Grady would push with his legs like he sometimes does and roll right out of his lap so I kept reaching over in case he would fall. Dr. Boyle thought it was pretty funny. He said he hasn't dropped any of his kids & he certainly won't drop mine. What a blessing it is to have Dr. Boyle as Grady's tranplant doc. He can relate very well with his patients & has a great sense of humor. He is always making us laugh! Dr. Boyle was very pleased with Grady's echo & EKG. He said Grady sounds a little congested - which we have noticed & mentioned to the nurses at rehab - and he wrote an order to start his albuterol treatments again. He doesn't think it's anything serious - it's more of a preventative treatment. Dr. Boyle gave me a hug & we were on our way back to rehab. It was so good to see everybody.

When we got back to rehab it was time for one of his scheduled oral feeds (he actually got a feed while at the main hospital but we put the entire feed thru his ng tube). The occupational therapist came in to help me with the feed. Since Grady doesn't latch on to the nipple very well, I have to support his cheeks and under his chin with my fingers and thumb as well as hold the bottle. It sounds complicated, but after watching the therapist do it I was able to figure it out. I am learning a lot about feeds. When Grady was at the main hospital, we pretty much stuck the bottle in his mouth & hoped he would drink it all. We never worried about pacing or watching his heart rate or anything like that - which is probably why he would throw a lot of his feeds back up. He hasn't thrown up once since he's been at rehab. Today he took 24 & 26 mls out of 52 during the 2 oral feeds I gave him. I know he sometimes took more at the main hospital but he would spit a lot of it back up. I really feel like we are making progress. Hopefully, tomorrow will be another good day. Ken and Colby will come tomorrow night - can't wait!