Movin' Right Along

Alistair had a fairly quiet Sunday. Nana stayed with him Saturday night. They had a slow morning together and then we all showed up. My parents hit the road to head home and the rest of us went to the gift shop to look around - per Alistair's request. When we got back, Jen and Heather had arrived to visit and shortly after that Aunt Donna and Uncle Dan. We had a nice visit with everyone. Jen and Heather stuck around for lunch and we at out on the patio. Grandma Judy showed up right before they left and then once it was just us and Judy, Alistair and Gillian settled in to watch another movie together. Seth, Gillian and I headed home and had a nice evening together. Alistair and Judy also had a nice evening together and a decent night sleeping.

This morning, Alistair woke up ready to go. He was talking up a storm and enunciating fairly well! I took Gillian to camp this morning, so when I walked in Alistair was in the middle of OT. They were working on self-feeding and hand control. Then he went to speech and had school coupled with it. His SLP was very excited about all the talking he was doing. In PT we worked on sitting up on the mat table and then leaning to one side or the other and then sitting back up again. He did great with that and has really rebuilt a lot of trunk stability. He had a 2 hour window of rest before his afternoon sessions. In that downtime he had his wound dressing changed. Only about 2 inches of his sternum incision still needs to heal, the rest of it is scabbed over! It is amazing to see how quickly that healed over! 

This afternoon he worked with his SLP on eating some chewy foods, to help move his dietary restrictions up past pureed status. I think he did a great job, she wants to work with him a little more before she gives the green light to nutrition. I think getting off of pureed food will do wonders for his appetite and eating! We also requested for them to stop his overnight feeds in an effort to help him feel hungry in the morning. His appetite doesn't really show up until lunch time and we think it is largely due to the fact that he "eats" all night. Their rationale for it is that it is making up for calories not consumed throughout the day, which might be. But it is kind of a catch 22 and if he can be hungry and eat more then he won't need to make up calories! We are willing to be wrong! 

Alistair's pediatrician stopped by this afternoon for a visit. Alistair decided we would hit Starbucks and then go drink our goodies at the Rooftop Garden. We did some chatting and Alistair impressed her with his alphabet board use, and spelling! We got talking about her summer plans and the camping they have done. Alistair spelled out, "What, no fair!" and then burst into tears! Poor buddy, this is so hard. I think he forgets there is life going on outside of the hospital and when he is reminded it hits him hard. We aren't trying to keep him in a bubble, but are also trying to make it easier on him to recover. We still have camping plans for this year and intend to keep them and go! We also intend to make up a lot of other things that we missed this summer next summer. I am not looking forward when school starts as I am sure Alistair will be upset about missing the beginning of school!

Tonight Seth and Alistair are hanging out and Gillian and I are at home. So begins the ships in the night phase, although we will have a few nights here and there where others will stay with Alistair or will stay with Gillian. Each of them should also have both of us together with them occasionally! The scheduling has begun! Day one of all the team back in play went fairly smoothly. Hopefully that continues!