The Rowes in the Rose City: Medical Mania

Mostly good news today. Somedays, like today, my head spins & it's difficult to keep up.

The National Institutes of Health (NIH) called early from Bethesda, Maryland, to follow up. They want to review ALL of Jordan's medical records, results, tests, everything. Once the review is done, they will decide if they want to see her. If so, they will fly us out, put us up in a hotel, and she will be evaluated by 5 to 10 specialists in the genetics & metabolic world. The head doctor of the program said that, if selected for follow-up, we could expect a ~66% chance of getting a diagnosis from them. I have to get her entire file shipped off, including a few pics from birth to now (those help with the dysmorphology phase of evaluation).

On to physical therapy. If it hadn't been a holiday yesterday I would have cancelled, expecting it to be a bust since Jordan still isn't doing what she was 4 or 6 weeks ago, and is screamin' & crabby as hell. But, of course, as soon as Katie started working with her she calmed down, and performed! Typical. She was holding up her head, trying to sit, and even rolled over a number of times. I guess it really is hard to see the improvements when I see her everyday, all the time.

A little looser, and hangin' in the hammock

Blood pressure check: It was up pretty high today, possibly from her added salt regiment. The (Salmon Creek Hospital) nurses on the peds floor were curious why we weren't around last week, and had to know all the details about our hospital stay at Emanuel. They ALL used to work there, so they wanted to know who our nurses were, and what happened, detail by detail. I wish we could have checked in there last week. . . .

Labs: Only a basic metabolic panel (to watch Na & K in particular) ordered today, and a test for Carbohydrate Deficiency Syndrome that was supposed to be collected last Tuesday, but we ended up at Emanuel instead of going to the lab for the blood draw. They, too, were curious about our whereabouts, and were disheartened to hear of our unbelievably bad time with blood draws at the children's hospital [I was extremely frustrated last week, Jordan is NOT a voo-doo doll! I told every person who came to poke her how the Salmon Creek women can get blood without blinking an eye]. The CDS test was ordered by our UW geneticist. All the docs are ordering all their own tests, and believe me, it's getting confusing!

Called UW geneticist to get Jordan's records faxed to the correct number, and updated them with the info about the CDS test and the yet-to-be-approved Prader-Willii DNA test. They want all their labs run at Children's Hospital in Seattle, instead of the Mayo Clinic, where they would normally go.

Called the pediatrician to discuss the increase in blood pressure. She'll have to consult with the nephrologist to decide what to do. I also wanted to hear the results of the BMP, and follow up with some of the faxes and referals she is sending out to other docs. However, she didn't call me back, so I'll have to chase her down tomorrow. We don't have any more doctor appointments scheduled until Friday (2 that day), and I'm afraid I'll forget everything by then. [She will have blood pressure and labs checked again on Thursday.]

Down to Emanuel for EEG #5: Believe it or not, Jordan had screamed herself to sleep by this time, and slept through the set-up and the test (this is nothing short of a miracle to sleep through). In fact, at the end we tried to wake her up to get a little of that info recorded, and we COULDN'T. Unbelievable. The tech kept saying "what a sweet, gentle darling," etc., and I wanted to just leave her there with the tech for a few hours so she could see how wrong she is. How do kids always seem to make parents into liars?

Called 2 geneticists in Los Angeles. I actually spoke to one -- he answered the phone himself. Kinda crazy, that never happens, but somehow I called his laboratory (he's at UCLA), and he picked up. He gave me the number to his genetic counselor (assistant), and she booked us for an appointment on 23 October. Had to leave a message for the other geneticist.

Called the ped neurologist at UCLA. Had to leave a message. He swears he'll get back to me by the end of the week to book an appointment. Hopefully we can make things coordinate around the other appointment in LA, and not interfere with the PET scan in Detroit (that might be as soon as the end of September).

Daddy, you shaved!!
On the Avery front: Today was the first day of school, so her daycare was pretty bare, only the under 5s left. She had a much better day interacting with the other kids. She seems to be a bit scared of the bigger kids. She was supposed to start pre-school a couple of blocks away today, but a month ago they decided to close down, and I didn't have time to find her another one. Only a few pre-schools take kids younger than 3. I'm following up with one -- tomorrow is their first day so we'll have to see how it goes. However, tomorrow is her first day of gymnastics, and she can't wait! She's all about the somersaults and the jumping, so it should be right up her alley. But she's not a huge risk-taker (she gets that from Devon), so we'll see how it goes. Nana Noma found the class and is going to take her, but I'll be sneaking out to go watch & take pics (in the sly) as often as I can. She has quite a collection of leotards already.