Posted on July 19th, 2008 by Abby.
Categories: Our Journey, Our Journey (chronological).

You may remember James’s Medicaid coverage ran out on May 31. (We don’t qualify for Medicaid normally due to our assets, but while James was in the NICU he did, and it lasted a year.) In May we applied for Florida KidCare, the state insurance for children whose parents cannot offer them insurance, but they would not accept James’s application until his Medicaid ran out, and then they needed 4-6 weeks to process the application. That left us with the insurance gap, which thankfully turned out to be just the month of June. I didn’t know for sure that James had made it onto “the list” of covered children until July 1, and even then there seemed to be some confusion at CMS.

Children’s Medical Services Network (CMS) is a part of Fla. KidCare for chronically ill kids, and I think there are about 500-600 kids in it statewide. James was already part of CMS before his primary coverage with them began, and it functioned as an emergency secondary insurance during the gap, picking up the tab for a couple bottles of DDAVP that we needed in June. (Quick update: James’s last sodium finally showed a response to his dose of oral DDAVP, so we don’t have to start giving him the shots again.)

CMS is a mysterious thing. It is like having a very distant and very rich absent-minded benefactor who pays for everything you need (as long as you remind him you need it) but whose identity is completely hidden from you. I think their policy is “don’t ask, don’t tell,” but I keep asking because I can’t help it. I have called James’s case worker many many times because he has had doctor’s appointments and all his meds and supplies running out and still no insurance card or policy in the mail. She tells me that although their office sends out the insurance cards, she has no way of knowing whether we were sent one or not. She can’t tell me how much therapy is covered, and she can’t give me a list of CMS providers because it is “too long.” I now suspect that there is no written CMS insurance policy. Everything is transacted in a very low-tech, seemingly unsystematic way: I tell the doctor’s office or the medical supplier to call James’s case worker so she can tell them it’s “authorized.” There are no copays, for meds or appointments, as long as we pay the insanely low premium every month. It’s pretty sweet in a lot of ways, but it makes me nervous because it’s like all the info is on a “need to know” basis, and apparently, I don’t need to know very much.

Right after the insurance gap drama ended, Early Steps (Florida’s early intervention therapy program) called to say that they were cutting James’s four therapists back to one. Apparently they are out of money. Our new “family care coordinator” (now there’s a euphemism for you) told me on July 24 I would have to pick the single therapy James needs most–physical (gross motor skills like sitting and crawling), occupational (fine motor skills like grasping or reaching), or speech (which includes a second oral motor/feeding therapist for James). I was infuriated because James obviously really needs all of these. Supposedly the other therapists would become “consultants” and tell the primary therapist how to do their discipline with James during the one-hour-a-week session. (How a speech therapist could suddenly learn to do PT, and vice versa, I have no idea.)

I could not get the coordinator to admit that any way you look at it, the huge loss of therapy time would be terrible for James. She was determined to pretend that the new system was an improvement. She even told me she had one case where a child went without PT for a while, and then they discovered she didn’t even need it anymore. I told her, “That’s great, but that’s not my James.” Her response was, “Come on, give him some credit.” I almost cried. She doesn’t know what James is up against if she thinks that he is going to become normal just because I have high expectations.

Here is some video of James with his occupational and oral motor/feeding therapists:

Anyway, after struggling to determine which therapy James needs most (“would it be better for him to walk, or to talk? pick up objects, or swallow food?”) thankfully this drama is closed now because Friday I made a phone call to CMS. Apparently, whatever therapy Early Steps won’t cover will be “taken care of.”

We finally got the CMS card in the mail yesterday, all by itself in a hand-addressed envelope. It was typed on a typewriter, laminated with a name tag maker, and has the wrong pediatrician on it. But it’s golden.

it's all good


Posted on July 14th, 2008 by Abby.
Categories: Our Journey, Our Journey (chronological).

James has been busy growing and learning since I last updated the blog. He’s doing great as far as having stable health, but we are definitely feeling the drag of his developmental delays. At almost 15 months old, he is almost 17 lbs. and 28.5 inches long, still below the 3rd percentile on all his measures. I feel disappointed that he hasn’t said or done more, but I am trying to reflect on what he has done and remind myself that, as far as hearing goes, he is only 3 1/2 months old.

new hearing gear

So far his first and only clear word is “yeah,” which he does not generally say at logical times. He makes some single sounds (“aah,” “eh,” sometimes “oh” and “uh,” “g,” “h,” “y,” “m,” and “n”) and some signs (very simple versions of eat, more, and all done because his arms are so tight). He understands several words when we say them, like nose, mouth, tongue, hand, foot, up, ready, touch, get, brush, where, Mommy, Daddy, Grandpa, Grandma, and his name.

At the very end of May, we lost the night nurse (since Medicaid ended) and started the new formula from Dr. Bornstein, called Peptamen Jr. It smells much better than the Neosure or Pregestimil, more like a vanilla milkshake, and comes already mixed in cans we get from WIC. It has partially broken-down proteins so it is easier to digest. He is supposed to have 26 oz. a day, and the plan was to give him a week or two to get used to it and then start increasing his solid food/by mouth feedings gradually. More on how that turned out later. He also switched to the oral form of DDAVP at this time, so he is down to one small shot of growth hormone a day.

showin' off his blueberry

Soon after he started the Peptamen, James became constipated for about 3 weeks. I had to give him suppositories 2-3 times a day for him to get anything out. His hold-your-breath-turn-purple episodes picked back up to 6+ a day as he tried to clear out his plumbing. At the time I thought it was the new formula, but looking back (now that he has had the opposite problem, diarrhea “superpoops”) I think it was the switch to oral DDAVP (anti-diuretic hormone). Dr. Yang started him on a very low dose and has slowly raised it as we get his sodium blood draw numbers back each week. As the dose increased, the constipation has decreased. Unfortunately, his sodium level (a measure of his hydration) has not been decreasing significantly even though we are on a pretty high dose now. Dr. Yang said it may be a malabsorption problem, which means we would have to drop the oral DDAVP and go back to really big shots twice a day. That would be a major bummer. Hopefully this week’s blood test will show a better sodium number.

The gas has decreased about 50% on the new formula, but he still has to be vented after most feedings and it still hurts him. He only eats 5 times a day now, and after the big one at 10 pm he sleeps (mostly) until the next feeding, about 8 am. We have also modified his insulin intake so he gets a carb bolus at 10 pm, which brings his blood sugar down to float in the 200s all night; we hope this is an improvement on our previous model, which had him staying in the 500-300s all night until we gave him a bolus at 6:30 am. It took a lot of experimenting and middle-of-the-night sugar tests to make sure we got the numbers right without getting him too low. That is one excuse for why I’ve been too tired to blog.

Unfortunately the plan to move toward more oral feedings has largely been frustrated because James has a tendency to cough, and sometimes gag and retch, during his pureed snacks. He has a fifth therapist now, one that focuses on feeding and oral motor skills, and she and his speech therapist have determined that he coughs less with thicker purees and thickened juices. The same day we discovered that he liked Cheerios better than “puffs,” he gagged on one badly enough to make the therapist decide he could only have part of one a day. Bummer! We try to feed him something by mouth every day (after all his oral exercises and stretches), but it can only be 2-3 spoonfuls at most to avoid the coughing, which shows up about halfway through a 1/2 oz. feeding. He has a swallow study scheduled for Sept. 4 at the hospital (remember the barium milkshake of old?). I am impatient for that day to come so we can move ahead with feeding him more by mouth, but fearful that it will reveal a serious eating problem that will keep him on special tube feedings forever.

I thought months ago when James sat up for a few seconds by himself that he would naturally progress and be sitting independently by now. It has not been that easy. A couple weeks ago he set a new record of sitting for 1 minute while intently watching a new toy, but that is pretty unusual. Since he can’t sit and entertain himself, he wants to be carried or held all the time, which is very sweet and cuddly to be sure, but also very cumbersome if you are trying to make dinner or vacuum the house. Every once in a while he plays independently and happily in his high chair, usually with one of his favorite high chair toys: a ziplock of black-eyed peas, a string of gold beads, or a gift bag with a curly ribbon. Yesterday the big highlight was that while we practiced his sitting, which as usual had ended with him collapsed forward with his face on the floor and his hands raised in the air, he put his hands down and started trying to push himself back upright. He got up to about 45 degrees, so that was a big improvement. His physical therapist wrote a goal for him to be sitting independently in 6 months. If that happens, it would be so awesome.

Another physical development has been James’s desire to crawl. I usually put a mirror in front of him and a toy halfway there. With me supporting his chest and most of his weight, he had progressed to moving his knees forward one at a time (very slowly), but this last week he has regressed to pushing forward froggy-style with both legs at the same time. He can still move his arms forward one at a time.

A month ago we started a “brushing routine” with joint compressions, which his occupational therapist recommended to try and help with his tone, body awareness, and oversensitive palms and soles. I was skeptical that it would help James, but she felt it might be worth a try. Three times a day we brush his arms, hands, legs, feet, and back with a soft brush and then compress all his joints 10x apiece. So far we have seen some improvement in the sensitivity of his palms and toes/soles, which he tries to protect by keeping his fingers and toes curled up, and maybe some more awareness of his body when something touches it. The joint compressions are supposed to make him stronger.

When I have time I will update you all on the other fronts: James’s insurance gap, the new phantom insurance, and the plan to take away all but one of his therapists due to budget problems.

born for adversity

Posted on July 6th, 2008 by John.
Categories: Meditations on Scripture, Our Journey, Our Journey (chronological).

We have neglected giving our faithful readers a solid James update for too long! Abby will write an update soon, but for now, here’s a peek at the now-toothy boy:

who's a cutie?

Needless to say, it’s been a difficult month. We have been helped out substantially in a time of grief by back-to-back visitations by grandparents, and, most recently, by some old college friends, Xiao and Michelle, with their two kids.

watching fireworks in Sanford

Xiao (like “shower,” without “-er”) was my best man in my wedding, and I was his. Michelle was also a close friend in college to both me and Abby. We took a vacation together many years ago, and have remained good friends. Michelle planned the trip back in March as a summer vacation to see us and meet James for the first time and go to SeaWorld.

Shortly thereafter, Xiao’s MRI showed a new spot, a recurrence of the brain cancer he’s been fighting for five years.

As a result of the tumor or the aggressive chemotherapy, this Rice-educated engineer is not really able to walk independently and his speech is slurred to the point I was only able to make out about 20% of what he spoke. All the grief over losing the baby and the burden of being a special needs parent felt very small next to my best man’s battle.

As difficult as it was to see Xiao in this condition, I think the time was mutually therapeutic for both families. This has a lot to do with Michelle’s confidence in God’s goodness and her refusal to fear. I think if we’d had more time I could have learned a lot from her. In fact, since the purpose of this blog is to discern and share something of the goodness of God through adversity, I’ve included a link to Xiao’s Care Page on the right sidebar. Michelle has a very similar assignment, and I feel like she often does a better job at it.

I believe the trip was somehow therapeutic for Xiao, whose broadest smiles while he was here were when he was holding James. And James didn’t hold back his, either. There was something peculiar and beautiful about the two of them staring at each other, absorbed in a silent rapture, sharing a bond that perhaps only those who are “pressed but not crushed” can understand (2 Cor. 4:8).

It was also a rush for me to spend time with Nathan, their six-year old. (He was featured in a post I wrote over a year ago.) I can’t imagine how tough it must be on him as he sees what’s happening with Xiao, but he clung to me for a couple days as though I were his temporary dad. I confess I felt a more than a little joy to be next to him when he tossed a softball into a basket and won a little stuffed Shamu. Sometimes I look back at the years when all we wanted was a child, and now, in light of James’s frailty and difficult regimen, I wonder what on earth we were craving. In a way, Nathan helped me remember.


Anna is five months older than James. To see how adept she was with James’s toys, able to turn them on and push all the buttons and walk and run and stuff whole bananas in her mouth and chug a sippy cup — it was a vivid reminder that our journey with James is quite different, and the burdens in our future are substantial.

But speaking of burdens, Xiao smilingly stumbled across the threshold of my house Wednesday night wearing a tee shirt I designed back at Rice, probably 13 years ago. On it were a couple of verses from Psalm 86:

Praise be to the Lord, to God our Savior, who daily bears our burdens.
Our God is a God who saves; from the Sovereign LORD comes escape from death.

Probably if I had a time machine and could go back and redesign the shirt I could not come up with anything more appropriate for this weekend. For me or for Xiao.



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