When the honeymoon ends

Last month marked the 2 year anniversary of Alexandra's diagnosis. For some parents it seems a little cruel, perhaps even obscene, to mark it with ceremony, but I believe that it must be acknowledged for what it truly is: A blessing. Every single day, regardless of the headache my child has given me, how many more gray hairs I've sprouted, how hoarse my vocal cords are from yelling at her, every single day is a blessing.

We've also been blessed by some amazing friends. You read in my previous post that Alex would be getting an insulin pump; well, it's a done deal. The pump is already at my mom's house just waiting for Alexandra to strap it on and put it through its paces.

Also at my mom's house is a closet-full of donated pumping supplies and diabetic paraphernalia. I think my mom is going to need a bigger closet. Hardly a day goes by without someone emailing me to ask what they can send or to tell me about how they've mailed off a new glucose meter or strips or lancets or syringes. All I can say is, I am in awe of the generosity and kindness of the CWD community. I am sure I will need a whole suitcase (the 30" one!) just to hold it all.

Oh, haven't I told you yet? We're going to New Jersey! Yes, on July 25th we will leave Ghana for a long over-due well-deserved 6 week vacation. Sadly, my hubby won't be coming but he will be working hard to get our new home ready for us when we return, so it's all okay.

We are making a lot of plans, including a trip to Washington, D.C. to see a pediatric endocrinologist for Alex. Let me be clear, I love Alex's doctor here -- Dr. Renner is the most amazing compassionate woman you could ever meet. But she will be the first to tell you that she's not an endocrinologist and it was at her recommendation that I pursued an appointment.

Boy, let me tell you what a trip it is to get a doctor's appointment in the U.S. I do not envy at all any of the PCWD friends for what they deal with. Two months ago when the trip was first planned I contacted friends for recommendations for a pediatric endo in N.J. I had my poor mom calling all over the place and no one could squeeze us in even for a single consultation. Everyone was booked, no one was taking new patients. Even under these extraordinary circumstances no one was willing to even consider an appointment for Alex.

Then along comes my friend Tracy-Ann who works for Sanofi-Aventis, the maker of the Lantus insulin my child relies (i.e. lives) on who tells me she can get me an appointment at Children's Hospital in Washington, D.C. with the pediatric endo there. How about that? Another blessed friend! So that is on the schedule for August. To say I can't wait to talk to her is an understatement. I have a lot of questions and concerns that our doctor can't address right now.

What, you wonder? I've got celiac on my brain, truth be told. Alex has been nearly the same weight, give or take a pound or two, for nearly 21 months. Sure, she's grown a couple of inches but no weight gain? And she eats, boy does she eat! But there are also a few other things that are niggling me about her, too, like the unexplained tummy upsets on a regular basis, and her hemoglobin levels have always been low or even below the reference ranges.

Maybe that's not evidence enough but it got me looking into celiac testing a few months ago. Unfortunately, that's not a common test here and the only lab that is willing to do it has to send the sample overnight to South Africa. At my cost, of course. We're talking $300 just for shipping it. So celiac testing will wait till we get to the U.S., and then we'll have it done. At the suggestion of another PCWD I contacted the Celiac Center at the University of Maryland and bluntly asked if they'd be willing to test Alex for free. Can't hurt to ask, right? Nope, it doesn't, because the program's founder agreed to do it, so that's set, too, for August.

We've also been recently blessed by medical insurance through my husband's job, and Alex's insulin and most of her medical tests are covered. Good thing, too, because we needed a boatload of them done at the 2-year anniversary. One of those tests was something called the c-peptide, and I won't go into it in detail but suffice to say that the body spits out c-peptide in equal measure to insulin, so if your body makes X amount of insulin that it also makes X amount of c-peptide. I'm not an expert at interpreting medical tests, but if the test says Alex's c-peptide level is 165 and the reference ranges for someone who is fasting (which Alex was not, by the way) are between 365 and 1600 then I'm pretty sure it's okay for me to say Alex makes no insulin on her own. With what she'd eaten just before that test I'm pretty sure insulin would have been coming down in buckets if it could have, but it didn't.

That makes me kind of sad, but it's what I expected. I saw it coming when her insulin needs rose to nearly 32 units a day from 21 units only three months ago. I think her recent upper respiratory infection might have hastened the honeymoon's demise. Oh well, what is, is.

You've probably noticed, too, that I haven't updated in a while. My friend Leslie, who just came back to Ghana after having been away for a year, noted that I wasn't that uptight anymore. She was just being kind. I am still pretty anal. But I realize that this new normal isn't going to change any more and if I keep allowing it to stress me out as much as it did during the first year then I'm doing a disservice to my daughter, and my sons and my husband. And, more importantly, to me. I plan on being around for a long long time and I have to learn and accept that I can't really be Alex's pancreas, much as I'd like to be, but I can do the best that I can with the tools that I have at my disposal.

So, the honeymoon is over. That's alright. I am looking forward to the joys and challenges of the future. Alexandra's diabetes may get me down once in a while, but it won't keep me down. And we have a trip to see my family in less than 3 weeks. No one -- absolutely no one -- could be more blessed than I.