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!
