PT and progress

Mr.Beautiful 8 months

We had our 3rd physical therapy appointment today. I like them - i like to watch the therapist "play" with Macsen all the while working in core strengthening moves. She also does scar massage and stretches his ribcage/arms. He's a funny baby though. The therapist today kept trying to get him to sit unassisted for 5 seconds - he would always lurch sideways, forwards or backwards right at 4.5 seconds so when we finally got 5 seconds we applauded and moved on to baby push ups. At the end of his session she had to fill out his report and he sat for at least a whole minute... perfectly still, and unassisted while here attention was on her paperwork. He is making big improvements in his ability to tolerate time on his stomach and chest and today, for the first time, he rolled back to front to back to front all the way down the mat. We are still working on getting him to bear weight on his legs - when we try he just wants to bounce then buckles. But he'll get it. I missed the sweetest little walker on Craigslist that looks like a classic car - oh well. I'll keep looking.

We have also set our dates when we will be in Rochester, MN visiting the Mayo Clinic to participate in their research on HLHSers. They currently have 3 research studies going on that we will taking part in. Here is a link to those 3 studies: http://mayoresearch.mayo.edu/mayo/research/hypoplastic-left-heart-syndrome/index.cfm 

We spoke to their head researcher Dr.Nelson last week. He is working very hard to try to find something to help bolster HLHSer's hearts, specifically their overworked right ventricle, to postpone the need for heart  transplant. It was great to talk to him about my fears for Macsen - his overworked heart, the invasive and often destructive practice of diagnostic heart catheterizations (which blew 2 veins and 1 artery in Macsen's legs before they were able to finally gain access to his heart - a practice that doesn't take long before there are no longer viable access points. The Mayo Clinic is working on MRI imaging that may be more accurate and less damaging then caths. It's an amazing feeling to know we are on the cusp of so many innovations that will probably help Macsen stay healthier longer. 

Today the same clinic just announced that they will be using stem cells harvested from the baby's cord blood (something I kick myself for not doing but we were discouraged from doing it by CHOP) and injecting those cells into the baby's heart at the time of the 2nd surgery to try to heal some of the damage done from working so hard. They will start doing it soon! They have been approved. It is something I understand has been done in adult cardiac patients with stem cells reprogrammed from the patient's bone marrow. It's funny how things done in adults aren't automatically done/approved in children. It's a whole other process. Here's a link : http://www.startribune.com/lifestyle/kids-health/210778971.html

I chose to focus on the hope and the progress rather than the statement that some research shows only 50% of children with HLHS make it to their 5th birthday :( Insert fingers in ears (or eyes) and repeat after me "LALALALALALALALALALA I can't hear you." And that's how we roll around here.