looking up
James lost 8 grams Saturday, but he more than made up for it by gaining 46 yesterday. Now he is at 3 lbs. 3 oz. and some. He’s up to 32 mL of milk every 3 hours now.
Dr. Barr came by this morning and felt James’s head. He said the neurosurgeon said James’s sutures (skull edges) were mobile (not fused), and Dr. Barr confirmed that his head felt “much better” and the skull pieces overlapped less. That means his brain is growing and pushing them apart more.
James’s blood sugar has been all over the place the past couple days. They are trying to get a baseline for the amount of insulin he needs, but I have seen him get from 0 to .7 mL/hr., so I guess it’s not that easy of a task. He even had his head IV leak for an hour or two and yet his blood sugar was inexplicably low after not having the insulin for that time. His last blood sugar check was a little over 100, and he’s on .2 mL/hr. right now. Dr. Albertini said it was possible that he is starting to make insulin as he gets bigger! This is something to pray for.
I was worried that James already had a receding hairline, but it turns out they shaved his forehead for the head IVs. Right now his IV is on his foot, which has a gauze pad taped under it like a surfboard. Yesterday for Mother’s Day the staff made a card for me from James which had his footprints on it. One print was normal and the other had tape all over it.
Yesterday I got to wash his face and hair, which was matted with the saline/glucose solution that leaked into it. It was fun and he seemed to like the hair part, though not the face scrubbing.
Dr. Albertini is here now. After I asked her about his blood sugar numbers, she said to James, “You got all the doctors stumped!”
3 Responses to “looking up”
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Oh, Abby, after I saw you and James Tuesday, I got caught up in my own end-of-the-school-year madness and have only just today had a minute to sit down and see how things are going with you all. I am so sorry this is happening; my heart hurts for you and John but I rejoice for James that he has you for parents. You will give him the love, support and solid family structure that he (and every child) needs. What I know from living with Jonathan is that a special needs child requires the best of you, and you have all that and more to give. I also know from Jonathan that life is a precious gift in all forms, not just the “perfect” ones. Jon loves life and feels good about himself, adores food and video games, has a girlfriend whom he has broken up and gone back to numerous times this year, loves baseball and fishing, hates math and seizures and the 10 or so pills a day he takes to control them. He has gone parasailing and snow skiing more than once and has gone down into a cave 400 feet deep. He will never go to college, but he has a kind, loving spirit that surpasses all the intelligence in the world. I love you like a daughter, Abby, and I want to hug you close and tell you how proud I am of you. Call or email when you want to talk; I don’t want to intrude while you’re trying to cope with all this new information. I will keep posted through the site. I am thinking of you and John and James every day and praying for you (for strength for the two of you and insulin for James).
Love,
Rosemary
Keep stumping those doctors sweet Baby James as a lot of us people out here keep storming the gates of heaven on your behalf. Good thing to know Dr. Jesus is the Head Physician on your case, and He’s not stumped nor worried either. “The LORD will fight for you, James…” Oh, your brain is growing and your weight is growing! Surely much more is also growing, so much unseen to our eyes but open and laid bare to Your Creator Who knit you together in Abby’s womb so beautifully.
Dear Abby and John,
Uncle Robert and I read your blog daily and are thankful that you are able to keep up with it. We think of you so very, very often and it’s a wonderful way for your family and friends to stay informed. We are grateful that there were some positive indicators yesterday. I know, with certainty, that God has placed baby James with two parents who will love, support, encourage and enable him to be everything that he can be. We have lots of people in Georgia also praying for James and his wonderful parents.