Wednesday, September 13, 2006

1 step forward, 3 steps back

I spent the better part of today preparing for the neurologist visit. I had to get BubTar ready for school and drop him off, which took up most of the morning...but once that was over I focused solely on preparations for the appointment. I put Katie down early, so she could get her nap and be perky for the doctor. She did not WANT to nap. I heard her babbling and laughing and rolling around in her crib almost the entire time I was getting ready. I gathered all the paperwork. I packed the mother of all diaper bags, with enough entertainment to get through a 6 hours plane ride. I had blocks, nesting cups, coloring books, a magnadoodle, Goodnight Moon, flashcards, and the iPod with 2 episodes of Blue's Clues and 1 episode of the Little Einsteins. There was no way she'd be fussy while we waited. I printed maps and put them ih the front seat of the car. I put the diaper bag in the car. Everything was ready but KayTar. So I watched the clock and at the exact right moment I went in to get her. She was asleep. Finally. And she had pooped. So, instead of seamlessly transferring her from her crib to the car, I had to change her diaper and wake her up completely.

We arrive at the neurology clinic and all I had to do was sign in. We went over by the pretend fish tanks and KayTar was happy as a clam. When our restaurant style pager went off (3 minutes later), she was very disappointed to leave her new fishie friends. Luckily she was distracted by the blinking lights on our pager.

The appointment itself was kind of unnecessary. I think we could have just as easily done it all by phone. He had his mind made up before we even came in. He said the meds can take up to 2 months to work, so we will probably see more episodes. He still believes it is migralepsy. He only asked me a few questions, and examined KayTar for a few minutes. It wasn't all a loss, though. He is referring her to a developmental psychologist. Evidently she is GOOD. She doesn't see patients on a regular basis, she mainly does research, but he said he's calling in a favor for KayTar. We are being referred to a Feeding Clinic as well. She will see a gastroenterologist, occupational therapist, speech language pathologist, and a dietitian there. He said EI does very basic evaluations and we need something more conclusive with KayTar. So now we're playing with the big dogs, I suppose. We also have another neuro appointment in December. And he told me to keep the genetics appointment in January.

I feel like everyone has these suspicions about what is going on with KayTar, but no one is telling me. Everyone feels there is more to the puzzle, but they aren't telling me what they suspect. Nobody is looking at our diagnoses and saying "That explains EVERYTHING! Good work." They are saying "KayTar needs to see this additional specialist." or "Let's try this." It is maddening in a way. Sometimes I look at her and think, is all of this necessary? Is someone just going to tell us one of these days, "Oh sorry about all of that, she's totally normal." but I don't honestly think that day is coming. I think the day when someone finally tells us something it might be quite different than that.

Oh, and we never opened the glorious diaper bag. So much for being prepared.


Anonymous said...

How strange is it that I almost named my latest blog post "1 step forward, 3 steps back!" I would have, too, if the phone hadn't stopped me from writing it for a few hours.

I am glad to hear that they are actually sending you to more doctors. They aren't just dismissing the things you know are there. This is a great step.

Raehan said...


Hang in there.

She's a beauty, by the way.

Em said...

I know how hard this is... getting a diagnosis can be so painfully slow and frustrating. We actually have never got one for G. It does sound like the doctors are exploring all the options and are not dismissing you... (((hugs)))

purple_kangaroo said...

I found you via Moreena's blog and pediatric grand rounds, and just wanted to say I'm glad you're getting to see the "really good" specalist. I hope you get some answers soon.