Kingly News

Though it will bore most of the world, here's a means of keeping track of what's happening with the King household.

Thursday, October 30, 2003

We have heard from the geneticist. The news is not bad, but rather uncertain.

Here's the technicalities. Hannah has an extra chromosome on half her cells, as Janet mentioned earlier. There are two factors in Hannah's situation: which chromosome has the extra pair, and the fact that it's not on all cells.

Human chromosomes come in pairs. There are 23 pairs, yielding a normal 46 chromosomes. Down Syndrome, for instance, results from having an extra chromosome on pair 21. So it's important to know that Hannah has an extra chromosome (actually, a part of a chromosome--not even a whole extra one, which is really unusual) on pair 14. This is called trisomy 14. Since she has it only on part of her cells, it's also called mosaicism. So the complete condition is trisomy 14 mosaicism.

Had she had trisomy 14 on all cells, she could have suffered from facial abnormalities or hydrocephaly (water on the brain). With the mosaicism, the effect is lessened, and perhaps even absent.

Just to complicate things, there is this: the sample was a blood sample, of course, and with mosaicism there is no way to know if the same percentage holds with the rest of her body. It is quite possible for her to have no abnormal cells in her brain whatsoever, and that's what the geneticist is really wondering about at this point, because that's what could cause developmental challenges. If they are there, we may not be able to identify them until she is one or two years old--or even five years old.

So this is like waiting for the other shoe to fall, and (we hope) it may not fall at all.

Also making it difficult or impossible to come up with a prognosis: they've never seen this before. Our doctors knew of no record of a baby being born with trisomy 14 mosaicism. (The literature identifies some who were detected prenatally, but they either did not survive or the trisomy 14 did not show up in the baby--only in amniotic fluid or the placenta.) In subsequent searches, we have found a few references (such as a two-year-old girl), but they are very rare.

We'll go talk with them in more detail on Nov. 10.

Wednesday, October 29, 2003

More pictures to show. Hannah goes for physical therapy twice a week, which we call "going to play with Mr. Tom."

Hannah doesn't much like it when Mr. Tom makes her exercise--I think she'd rather join her couch potato brother (nickname: Spud) watching TV. However, Mr. Tom is gentle and insistent in his "playing," and he says Hannah is making wonderful progress. She fusses at him, but does what she is supposed to.


Later, we made an excursion to the library.

 
Her majesty peeks at the spectators as her bearer takes her to the library. Holding audience at the library. Doesn't she look regal?

Monday, October 27, 2003

We're still waiting to hear the results on all the tests for Hannah, but we got at least some test results back, enough to share an update. Plus, I can offer an update on Janet's surgery.

Janet first. She came through the surgery well--no complications, no difficulties. I could tell she was all right because she gave me one of those looks when I came in the recovery room--the one that says I am less than pleasing to her at the moment. :) She's been very sore, of course, but seems to be doing well. She was a little iffy about the surgery, especially following an exchange with the doctor just before the surgery.

He came in and said, "Good morning!"

As anyone who knows her knows, her only possible response was, "What's good about it?"

He said, "Any morning I can cut is a good morning."

To say the least, this made Janet even more nervous. However, it appears he knew what he was doing. We're still waiting to hear the biopsy report, but he is real sure it was a benign tumor on a salivary gland--nothing to worry about.

We have to run to the drug store to get some medicine for Hannah, so I'll post again in a little bit to tell more and update about Hannah.

Tuesday, October 21, 2003

Hannah came home from the hospital this morning. All things considered, she did well. She slept most of the day Monday, which concerned Janet (both that something might be wrong, and that Hannah might not sleep Monday night). It seems that it was simply Hannah's reaction to stress. The problem turned out to be that Hannah would sleep, but only when Janet was holding her (she would sleep for about 10 minutes in the hospital crib, then wake up whining--don't know if the tube bothered her or if the unfamiliar bed bothered her, but she slept fine while Janet held her). Of course, that meant that Janet got NO sleep.

We will hear back from the test on Wednesday, maybe Thursday, plus another couple of weeks before we hear back from the genetics testing. Janet goes for her own surgery on Thursday.

Saturday, October 18, 2003

We're doing exercises with Hannah at home to supplement the PT. Just some things the therapist showed us, but Hannah already seems to be responding to them. She seems to be getting the idea that she's supposed to hold her head up when she sits up, for instance, and most of the time tries to do so. Sometimes she's real successful, and sometimes she's not.

We heard from Jon and Caty today. Jon is very active in his high school band, and they are going to band competitions just about every weekend in Oct. His band took first place a couple of weeks ago! They placed fifth last week in a competition at Western Carolina University that involved bunches of bands, so that's a great one too. This week, they're off for another one.

I'm also so proud of Caty, because she worked through making a decision that was a bit fearful. She will go on a school trip next week that will be a lot of fun for her, and useful as well!