Macsen's new trick

Macsen is 9 months old now and really is a joy everyday. He smiles, chuckles, cuddles and hugs the whole time he's awake. Nights are still rough but we have started putting him in the cosleeper and he's tolerating it. It's propped on books and we have a pillow in there - a big nono I know but it keeps him propped so he doesn't aspirate on his ninja puke that sometimes surprises us at night - HI YA! He's chugging down the milk - still gags with food and won't take more than a teaspoon or so. He's rolling like a champ - back to front and front to back - and sitting for little stretches without toppling, and pushing up on his arms while on his tummy. I am so proud - he couldn't do any of these a month and a half ago! Hooray for physical therapy! We had an evaluation today with Early Intervention who will hopefully get us connected with other services to help catch him up. I'd like help trying to overcome his constant gagging, get him interested in eating, help him to learn to stand and bear weight on his legs, and start working with speech to help well... With his speech :) he squeals and screeches but he stopped saying vowels after his last surgery. All kind of normal for little people that have had multiple surgeries I just don't want to sit back and hope he catches up. He has developed a very convincing gag that he likes to do as his noise of choice. I think he likes to see us all jump up and come running with towels - waving our hands and shouting/pleading "No, no, no Macsen!" He has trained us well. Watch the video above or on YouTube with this link http://youtu.be/jE5saICjXAc
I was very disappointed this week to find out we were in fact NOT eligible to participate in the exciting HLHS research being done at the Mayo clinic pertaining to stem cells and regenerative therapies. Apparently after reviewing his medical records the pediatric cardiologist on staff felt his variations - specifically what he called unbalanced AV canal (referring to the fact that Macsen's right atrium is larger then his right vent - which we knew about we just didn't know there was a technical term) exclude him :( In fact, he felt that his defect is Unbalanced AV canal instead of HLHS - apparently 2 different defects with some overlaps. Yet again an example of how little standardization there is sometimes when talking about these rare defects. 1 doctor sees one thing and another sees something else. I was pretty upset with the new label - I know that is all it is and doesn't change anything- (Our favorite cardiologist still says its HLHS so there!) and not being able to actively "do something" to help speed up new therapies for Macsen... something he will desperately need.  Current practices and knowledge are better than 30 years ago but still not good enough to insure Macsen has the opportunity to have a full healthy life. I want to help make that happen. The researcher we were working with felt confident saying any new therapies would be applicable to Macsen - he just couldn't be part of the study. 
In happy news Macsen is now almost 16 lbs! We are enjoying our summer - swimming, camping, baking gingerbread cookies with the girls (they wanted to see if they would come alive and watched them for a full 5 minutes to make sure nothing moved before they bit their heads off.) Life is getting a little easier everyday as we all settle into the rhythm that is working for us. Aaron is FINALLY on day shift again - he's been stuck on night shift for 18 months and it was very hard on us as a family having him gone all night. Now he's here for story time with the girls and for all the various middle of the night criseses that are inevitable with 3 little kids. I am very very thankful to have him home at night :) Very very... Very