If You Can't Say Something Nice. . .

Well, here it goes, another one-handed entry, another Conan. Jordan slept from 10:00 pm to 11:30 pm, just when daddy took two Nyquil & headed off to bed (he's having an allergies-from-hell day today). So, with a full tummy, jammies, and a dry diaper I'm hoping she'll doze off again sooner rather than later, and I'm willing to sacrifice a thumb to that cause. Oh, god I need to sleep. I'm delirious with exhaustion. I don't know how I've gone this far, and how much more I can do. And tonight it feels like its all for nothing. I know it isn't, but sometimes it just feels that way. I feel like I'm working my tail off, and have nothing to show for it.

Perhaps I should be more grateful about Jordan's triumph over the devastating Infantile Spasm seizures (so far, knock on wood), and excited about what is to come now that her brain isn't mis-firing quite as much. At first she seemed to improve; better head control, more flexion. Baby steps, but we'll take them. But then things started spiralling: She regressed to newborn behaviors, quit sleeping through the night (and most of the day), and started screaming like maniac. Now, 47 days later, and seizure free (knock on wood), the screaming is finally starting to subside and the sleeping periods are becoming slightly longer. But at the same time, many things have gone wrong: urinary tract infections, cold sweats, sky-rocketing blood pressure, electolyte imbalance, increased white blood cell counts, and mysterious crystals in her urine. Her medicine schedule in itself is crazy: ACTH shots, Lasix, Augmenten, Zantac, vitamins, Tylenol & ibuprofen, once, twice, three times per day. Food in, food out. We chart like a hospital, just to keep track of what's been done and what we need to do next, too tired to remember all the details in our heads. I have a notebook for all the conversations with various doctors: run this test, see me next week, see the other doc tomorrow, call the insurance company, the early intervention program, the specialists in Bethesda, LA, Detroit, Seattle, Chicago. Ideas and theories, hypotheses and facts. Too much to remember, too important to forget.

I'm not all that excited to be on a first name basis with the valets at the hospital ("will you be doing labs today, too, or just blood pressure"), but I'm glad that they're so friendly. The nurses on the peds floor and the technicians in the lab are becoming friends. We're starting to know each others stories, kids, adventures. Again, not a bad thing, but not exactly the traditional way to make friends.

But the thing that's really been getting to me lately are the calls from the doctors. I just don't want to hear it from them any more. They call day & night, weekday & weekend, just to tell us (i.e. remind us) that something is abnormal. Duh. Seriously. Of course things are abnormal. Nothing about Jordan is normal. We know that already. And really what I hear is this: No matter how hard you work to feed her, or medicate her, or train her, no matter how many physical therapies she goes to, or drugs she takes, or doctors she sees, she's abnormal, and you aren't making her better. I'm really getting to the point of giving up. I feel like I'm killing myself for nothing. My god after 8 months of nonstop therapy, doctors, medicines, and tests, she still can't hold her head up. She still can't sit. She still doesn't smile, or put her hands in her mouth, or, hell, eat through her mouth.

When is it ever going to get better? Is this what she's going to be like at 30 pounds, 40 pounds, 10 years old, 20 years old. No one can tell us that; all they tell us is that yet one more thing is wrong. It's quite a list, and growing. Perhaps we'll stop the seizures, lower the blood pressure, stabilize the electrolytes, even get her to hold her head up, but then what? Then where do we go? Then what do we do? Will she see? Will she walk? Will she be able to go to school? Will she even know who we are?

So here's the deal doctors -- I just want you to quit calling until you can say something nice for once. Didn't your mothers teach you that?


And on a totally separate note: A huge THANK YOU to JAYNIE for the yummy, nummy dinner! It was delicious, and we even had enough for a leftover meal to come. Thank you soooooo much! We really needed that, especially today with chef Devon out with allergies. I had already resigned myslf to a bowl of Cocoa Krispies for dinner when you showed up and saved the day.