I'm long overdue for an entry here. So much time has passed and Declan has grown so much since the last post. He is our special little guy, but definitely all BOY. His favorite pastimes include breaking small twigs, picking up and examining live ants, and digging through the mulch in the flowerbeds. Oh, and if there is a button to push (phone/remote/etc) he will push it!. If the Kindle is left unattended for any period of time, he grabs it and starts swiping and tapping with such remarkable speed that somehow the settings are altered to zoom in the screen and activate voice reader. I don't know how he does it but it takes 10x the amount of time to fix the settings. He is such a happy little guy- with en ever present smile that can lighten anyone's load.
Declan also loves to be "helpful". Vacuuming is particularly fun around him. He loves "cords" so you might be vacuuming and think you have reached the end of the cord, but when you turn around to look for a closer plug, you find that Declan pulling on the other end of the cord with a big smile on his face. He also loves to follow you around while you vacuum. (A far cry from Acadia's toddler years when she would emit torture-like screams if she heard the vacuum event turn on!) Another household-chore favorite of Declan is doing the dishes. Okay, he does't actually load the dishwasher but he loves to "sit in his spot" and smile at you while you load it.
As far as his health goes, his heart has been performing as expected, given his surgeries. During each of the last few cardiologist visits, (we are now quarterly) he EKG, and "echo's" have looked good. His Glenn has been functioning as hoped. At the last visit, they let us know that they would plan for his Fontan spring of 2018. However, we just found out that the Dr that performed his Norwood and Glenn surgeries has left Yale and is practicing in North Carolina. That puts us in a bit of a pickle. No other hospitals in CT can perform the Fontan, so that leaves us with Boston, Philly, or NY. So we have to address that. Our biggest challenge is still feeding. He was allowing us to give him a little food, but then he got the stomach flu and lost a lot of weight. We have been working with dietitians, GI doctors, and feeding therapists to get his weight back up. He's close now to the "50th percentile" but feeding is quite a chor. We have to "bribe" him for almost every bite and feeding him a yogurt can take an hour or two over one or two sittings. He still "pockets" food that needs chewing, and now they want to do a swallowing study. But luckily he still has the good 'ole feeding tube (which acutely came in handy this spring when had that stomach bug).
Tammy and I continue to be grateful for every moment with him. A few months ago we learned of two other families that had children with HLHS. Unfortunately, only of of them made it past the first surgery. We are thankful for each moment and cherish every hug and smile he gives us. Declan is such a blessing in our life.
