earmarks


Posted on February 22nd, 2008 by Abby.
Categories: Our Journey, Our Journey (chronological).

Today James was sedated and given a hearing test called an auditory brainstem response (ABR) at Arnold Palmer Hospital, where all his previous surgeries were done. To get him ready to go, we had to stop feeding him at 3 am and turn down his pump to 70% of his normal insulin dose. Despite this precaution, he dropped to 65 at 7:30 am, and we had to suspend his pump completely and feed him some glutose gel and apple juice. Although the fluids were against the anesthesiologist’s directions, they still let him get the test. We ended up putting his insulin at 20% of normal for the duration of the test, and that was just right.

Let me back up and explain that Dr. Saffran (the ENT) ordered this test at James’s Dec. 26 appointment to determine how much he could really hear. Since it required sedation, this became a huge bear to set up because of all James’s medical issues. I made a lot of phone calls to coordinate between ENT, audiology, anesthesiology, endocrinology, and the hospital itself. Finally they set up an “anesthesiology consult” where we detailed all of James’s issues/medications and reviewed his past surgery records. They determined that his test needed to be performed in the operating room in case the sedation knocked him out to the point that he stopped breathing and needed to be intubated, which you may remember is difficult due to his narrow jaw. Once they decided where to do it, it was scheduled for today.

At the hospital we had to strip James down to his insulin belt and diaper and one sock (now lost) that covered his pulse ox cuff. They gave him a little infant hospital gown with dogs on it. It was so cute! He was doing great until they put the IV in his foot. The anesthesiologist was able to get it in on the first try, but it really hurt him. Finally they carried him away for the test.

Dr. Whitaker was the audiologist who performed the ABR. This is a test that puts clicks into his ears and uses electrodes on his scalp to determine whether his brain is receiving the input at the end of the auditory nerves. You may recall that he had an ABR done way back in June which showed that his hearing in his good ear was “normal.” Apparently it was the low end of normal for a newborn. His test today showed his left (good) ear slightly better than it was in the June test, but compared to what it should be by this age, it is considered to have mild to moderate hearing loss. His tiny ear, the right one, showed some response, but was evaluated as having moderate to severe hearing loss. It doesn’t hear lower pitches well. Both his ears probably hear sounds as muffled, like his ears are plugged, unless they are loud.

She also tried to give some clicks behind his ears against his skull, using a little box called a bone conduction vibrator, and she said he had a “great response” to them. This suggests that at least one of his ears has normal hearing levels for bone conduction, and a bone conductor hearing aid might help him hear better because it will bypass the ear canal where his structures are incomplete (see below). This is something we can follow up on with the ENT and at his next audiology appointment. The bad news is that they look pretty hideous with straps all over your head to hold them on, besides the funky boxes behind your ears. Here is a neat site from a family that found some better ways for their son to wear them than the usual metal headband.

I realize I forgot to share the results from James’s CT scan of his ears from January. He didn’t have to be sedated for that one; they told us to keep him awake and then feed him right beforehand so he would go to sleep. He cooperated until they strapped him into the machine, but then the circular motion and lights fascinated him enough to keep him still. The last time I talked to the ENT, he hadn’t received the actual films from the CT scan, only the written evaluation, so some of this is sketchy. It showed that he had normal cochleas and middle ear spaces on both sides. He has ossicles (inner ear bones) on both sides, but they are not totally normal; the doc said that could mean one is missing or that two are fused together; he couldn’t tell without seeing the scan. One part that the interpreter noted as unusual was the semicircular canals, which deal with balance. I hope to get the details of the CT at an appointment with the ENT soon.

I wish the results from these tests were better; I had really hoped that James’s good ear had good enough hearing to not need any hearing aid. I dread him looking even more like a bionic baby than he already does. I am glad, however, that we got the tests done so we can start helping him hear better.

The other day I saw an appointment with our first ENT doc crossed out on the calendar. It would have been only our second appointment with him. In the time it took him to see James for a second time, we have seen Dr. Saffran twice and completed two major assessments with plans to get a hearing aid. The first doc didn’t think we could do anything meaningful for a few years. How providential that we got a new ENT!

when the moon hits your eye like a big pizza pie… that’s amore


Posted on February 15th, 2008 by John.
Categories: Our Journey, Our Journey (chronological).

Nothing beats sausage and mushrooms at Gino's

James enjoyed receiving several Valentine’s Day cards from friends and family. We celebrated Valentine’s day by taking James to one of our favorite haunts: Gino’s Pizza in Oviedo. Best pizza on the planet. Although he made a few new friends, he wasn’t nearly the people-magnet he usually is. Most of the time he kept his eye on the pie.

We’re 11% of the way towards our goal for the Walk for the Cure! Much thanks to those who have already donated, and to those who are just about to. For more info, see the “Cure Diabetes!” link on the top right of the page.

walking!


Posted on February 10th, 2008 by John.
Categories: Our Journey, Our Journey (chronological).

… well, not James. Not, yet.

..but James’s parents are walking a 5K on March 1 to raise money for the Juvenile Diabetes Research Foundation, the only major organization focused exclusively on researching a cure for type 1 diabetes.

If you have been a regular reader of this blog and enjoy the photo shoots of “Mr. Eyelashes,” please consider one of the following:

Join us on the walk! If you live in Orlando and want to walk 5 kilometers for “Team sweetbabyjames.info” in the UCF area on March 1, we’d love to have your company. James himself will be there, and he always has a lot of smiles to give to his friends.

Support our walk through a donation to JDRF! We set up a link on the sidebar of the blog (“Cure Diabetes!”) which takes you to our fundraising page. We set a goal for $1306, one dollar for every gram James weighed when he was born with diabetes last April. Please consider giving, even a small amount. Many hands working together have brought James this far, and from many hands working together we believe diabetes will one day have a cure.

what has it got in its pocketses?


Posted on February 8th, 2008 by Lamons Warren.
Categories: Our Journey, Our Journey (chronological).

If you were to check the pockets of most little boys, you might find rocks, marbles, plastic dinosaurs or live frogs. If Gollum were asking, he might suspect a treasure like the ring of power was tucked away there. Though not a ring, the treasure this “halfling” does carry is plenty powerful…an insulin pump.

A box without hinges, key or lid, yet golden treasure inside is hid.

As soon as the possibility of James getting an insulin pump became real, and we came down from our initial excitement and joy, another question came up: What does the well-dressed pump-packing baby boy wear?? Pump carriers all seem to be designed with adults or large children in mind, so nothing is available commercially. We cycled through many possibilities in our mind. We did find that the pump fit comfortably into the pockets of his little overalls, but most under-one-year baby clothes do not feature pockets at all, let alone ones large enough for the pump. So additional alternatives were needed. After trial and error and much thought, we came up with the baby pump belt, which so far seems to fit comfortably and serve the pump-carrying purpose.

Captain Midnight!!

He is now wearing the prototype of what I am sure will be many models. I call this first one in midnight blue with white stars the “Captain Midnight.” It will soon be followed by the “Indiana Jones,” done in khaki with top-stitch detailing. Eat your heart out, Calvin Klein.

pumped


Posted on February 7th, 2008 by Abby.
Categories: Our Journey, Our Journey (chronological).

In the NICU, I remember Sarah Scott, the diabetes educator nurse, explaining that James needed to have 6 mm of fat on several places in his body in order to get an insulin pump. Back then, with him struggling to beat the 4-pound mark, it seemed like that would take an eternity.

Since coming home, every time I have had to give him a shot of Lantus or regular insulin (1-7 times a day), I reminded myself that this would only go on until the pump arrived. When he was crying because his sugar was high and we had to wait 45 minutes for the insulin to kick in to make him feel better, or when I knew he would be high all day long until I could increase his Lantus dose the next morning, we said how nice it would be when he got a pump. And when his sugar was low but his gas forced all his food back out of his stomach, we gritted our teeth or cried a little when we saw his scared, constricted pupils and said, “I wish we had the pump.”

Abercrombie pose

Two weeks ago we got home from a doctor’s appointment and listened to a message saying James’s $8000 Animas 2020 was on the way (courtesy of Medicaid). He got the 2020 because it delivers the smallest-increment insulin dose on the market–perfect for James. Last week we opened it and fondled its sleek blue curves and peered through the packaging at its unfamiliar supplies. We popped in the battery but were afraid to do much more than tab through its bright menus. We started absorbing the new terms slowly–bolus and basal rate, carbs and ISFs. This new method of insulin delivery was going to be a big adjustment to our pretty predictable insulin routine.

On Monday afternoon Sarah Scott set up his dosages and helped us hook him up to his new pump for the first time. He is the youngest person she has ever put on a pump. We felt exuberant as we fed him out in the parking lot after the appointment. Monday night we gave James his last shot of insulin (barring future emergencies). Tuesday at 9am his Lantus wore off and I watched his pump screen count down the time until it sprang into action. No more all-day highs or all-day lows. No more painful shots of insulin (now he just has three shots a day: growth hormone and two doses of anti-diuretic). No more carrying around needles and bottles of insulin in cooler bags.

Controlling James’s sugar levels with injections made his sugar fluctuate up and down in waves; our main objective was to keep the amplitude from going too high or too low. Now, with the pump, we can deliver rapid-acting insulin (it only takes 15 minutes to kick in) to cover his sugar highs right when they occur, when he eats. Once the food is broken down, we can level the insulin off so it doesn’t continue to drop him lower. We can control him more tightly, and he will feel better more of the time. And did I mention that he would get fewer shots? This is an answer to prayer! The pump’s tube goes into the fat on his thigh with a tiny flexible tube (cannula) that is inserted in a new spot every 3 days. Inserting it doesn’t hurt nearly as much as a needle, and the insulin delivery through it isn’t felt at all.

So far we have been checking James’s sugars about 20 times a day to learn how he reacts to each new dose of insulin. After we establish his patterns, we won’t have to check so often.

Needless to say, we are all pumped.

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