Harry in his new wheels

Harry goes to rehab, in real clothes

Hi all,
Just wanted to give another update on our little guy. Since leaving ICU, he's been up in recovery for a few days now and the plan is to head to another area for rehab. He's been quite sad the last few days, as you might imagine, since he's immobile and cannot speak beyond 'yeah'. He remains on a feeding tube until he can really eat and take in enough fluids, we are working on that. Thanks to our moms, ben has been able to continue with school, and elsa has been taken care of. We have no idea how long he will remain in rehab, and if indeed we go today. But they are supposed to have a wonderful program here, so he will be in good hands and hopefully make some more progress with his motor development. We were able to get him in a stroller yesterday with some assistance and equipment and actually move around the hospital. He really liked seeing the fish. The good news is that he appears to undertand what we are saying. So we are looking forward to him being challenged with more to do and are definitely tired of being here, already, but know that we are at the start of a very long road. Thank you to all our well wishers and family/friends for your support.

our first smile

Harry goes in for surgery

He went in on the 15th for a shunt removal, and possibly the fontan, which is the last stage of the norwood procedure, google it for more info. Based on the amount of scar tissue, etc, our surgeon ended up doing the whole thing. As a result of the extensive work on his aorta and being on bypass for so long, his brain did not get enough oxygenated blood and he sustained extensive brain damage as a result, which is always a possibility, even just with anesthetic. So that's where we are. We are pooped but Harry seems to be doing pretty well. We are praying for a full recovery but we will see what happens.

an hour after surgery in CTICU