In most things that he does Flynn seems pretty much on target, neither unusually advanced nor worryingly slow. He seems pretty much like a normal eleven week-old. His only shortcoming is feeding. He hates to eat by mouth, and this is a great trial to us, since he depends entirely on his g-tube for food. I have visions of someone sitting in a high-school cafeteria holding up a vinyl feeding sack with a line running to his stomach.
This won't happen, I suppose. It will take time. And there are worse problems that we could have.
He is mostly sleeping through the night, he smiles, swats at his toys, watches everything. He wants to be held much of the time, too, which can get in the way of a lot of things. But I did say that we could have had far worse problems.
We are going back to St Louis for a day and a half so they can put in his
mic-key. Temporary, one hopes. He's also going to get another echo so they can check out his murmur and his hypotension and I daresay they are very interested in how he is doing generally.
He has gained quite a bit of weight, just about half a kilogram in the three and a half weeks we've been home. Since the 17th of January, he's regularly gained about 30 grams a day. He's much smaller than Sparrow was at his age, still about 5% or less for weight, but he seems to be making up for it.
We shall see.
I'll try to post now and again as interesting things occur but I think I can sum up: we were completely lucky, and our results were not typical. Thanks to the
Fetal Care Institute we had such a wonderful outcome, and we hope and expect that the techniques that they are pioneering will lead to a sea-change in how babies like Flynn are diagnosed, treated, and survive.
