glad tidings

Lest the last couple “serious” posts mislead you, there have been many bright moments recently to rejoice over. Pour yourself some eggnog and sing along with us:

On James’s first Christmas, twelve things we celebrate (1):

Lots of hand-me-downs (2)
Nana’s cooking lessons
Free formula and diapers
A back-up Mic-Key button
Free Christmas dinner (3)
“First Christmas” ornaments
Turning toward his name (4)
$500 anonymous gift! (5)
A healing Mic-Key site (6)
A three-dollar hospital bill (7)
Two grabbing hands,
And NO cystic fibrosis (8)!

Notes:

(1) Well, more than twelve, but we are trying to fit the song here.

(2) Thank you, Jessica and Frank!

(3) Dr. Yang, Dr. Desrosiers, and Dr. Banks’ Pediatric Endocrinology office chose to bless our family this Christmas with a Christmas dinner from Honeybaked Ham and a bunch of gifts for James which we haven’t finished opening yet. So far we’ve seen oodles of diapers and formula! They also asked if there was anything in particular we needed…and as a long shot, I told them we needed another Mic-Key button as a back-up in case his had to come out or was pulled out. (A Mic-Key is the stomach button that snaps open and shut and has a tube that screws in when we need to feed James.) We had to replace his first one because the balloon that holds it in was leaking and the site was getting irritated, and Medicaid would not cover a second back-up in less than 90 days. Our medical supply company said we could buy one for $185, which I figured was beyond what the Endocrine office wanted to do. But what do you know…they had one sent to us in the mail right away.

(4) James never reacted to his name being called until yesterday. I got on his left side and called him when he was looking to the right, and twice he turned and looked at me. I don’t know if he is responding to the name or just my voice, but either way, it’s progress! At the neurologist’s office last week, Dr. Barr hit a tuning fork and found that James definitely heard it when it was touched to his bone, but not through the air. This confirms that he has the sensory-neural equipment needed to hear sounds, just not the conductive ear apparatuses to get the sound out of the air. It will be much easier to fix his ear than it would have been to fix his brain’s ability to hear. Dr. Barr seemed very pleased with how well James was doing. He said the angry breath-holding fits would probably decrease with age.

(5) This came from someone at our church (Orlando Grace).

(6) This makes James much more cuddly again since his tummy doesn’t hurt.

(7) Incredibly, we got the final bill for James’s 135 days in the NICU. Although I know the NICU price CIGNA was charged was over $500,000, which did not count all the doctors’ visits or surgeries, the final cost for us after insurance and Medicaid was $3. We wonder what exactly that covers, but we are afraid to ask in case they decide we should pay more.

(8) Yep, the results came back and he is totally negative for about 90 types of cystic fibrosis. PRAISE GOD!