Moving right along

We have been so busy with school starting, Macsen's numerous appointments, keeping up with our prolific poopers (2 new cats and the dog who has decided pooping inside is  just as good if not better than pooping outside) and my new much needed outlet - Roller Derby. Life is just moving right along and it's pretty great - minus the poop.

Macsen had a great time at his birthday party. His cake, made through a national charity called Icing Smiles and a local baker Tara @ Foster Street Bakery, was just beautiful - and dairy free! So he could attempt to eat some of his icing which he did with only 2 gags and no pukes, and I got to eat some too. My favorite part of the party was when everyone sang Happy Birthday.... He looked from face to face acknowledging everyone there  and I like to think he was thanking everyone for all the ways they have helped him and us over the past year. Every day I thank God and our community of friends for getting us to PA. We really have had the best case scenario during our journey with HLHS and I have no doubt it is because of the expert care M has gotten from day 1. 

We are currently in the car on our way to another appointment in Pensacola so Macsen can have a swallow study done. He still cannot eat food - only drinks breast milk - and he gags and vomits on even the tiniest crumb or unpureed bit. His sisters were eating everything at 1 yr - mashing everything with their toothless gums. So we are trying to get to the bottom of it. First comes a barium/X-ray study where they will (attempt to ) feed him barium laced food then if that doesn't reveal anything they want to do an upper gi scope. Then lastly a more involved scope may be needed but we would go somewhere with more expertise with heart kiddos for that - sedation is involved and M has paradoxical issues with anesthesia. 

We are trying to plan a trip to CHOP sometime this fall so they can evaluate Macsen. They have a program for single ventricle kids that looks for any/all issues they commonly develop b/c of their circulation/multiple surgeries etc. Scheduling is supposed to call this week with open dates. 

At his cardio appt last week they saw a little decrease in function though not enough to warrant adding any heart function meds (he is currently only on aspirin.) 

44 miles to go before we get to PCola and M can't eat before this test. Might get dicey up in here!