Monday, April 20, 2009

I should start with something positive . . . we had a fantastic break. We swam, went to the zoo, went to parks, played, etc. Lots of family fun time. All of the doctors were on vacation, which ended up forcing us to have a week without doctors . . . it was annoying not to get anything done while we were off from work, but ended up being lovely. It often strikes me as very sad that we are spending so much of Maya's babyhood driving to every doctor under the sun.

That said, today the doctors were back and so were we. Dave took the day off from work (thanks to the other KIPP teachers who make this possible!) to come with us to the ENT and the neurologist.

1. The ENT checked out Maya and saw that her adenoids were still enlarged. We're going to go ahead with surgery next Thursday, April 30th (her 11 month birthday!) to remove them. It's really hard to decide whether someone else (who can't speak) should have an operation. But we have hopes that she will be able to breathe easier, and that she may progress faster towards eating with the extra breathing space. Currently, her adenoids are obstructing about 70% of the speace that she breathes through, which is a lot. That said, it will obviously be sad and scary to send her into surgery :(

This is what they should look like, if they weren't swollen:

2. Neurologist: The neurologist and his partner were really, really nice. That said, it was stupid to go see them. I had made this appointment by accident (I was supposed to find a developmental pediatrician, not a pediatric neurologist) a few months ago, and decided to keep it because . . . why not? Maybe they would just clear her neurologically and that would be one less thing to worry about? Turns out not so much.

If you went to a proctologist and complained that every time you ate, your stomach hurt, you'd expect them to go in (yikes!) for a look, no? Because looking up people's rear end is what they do. Well, if you take a baby to a neurologist because she doesn't eat and has developmental delays, they want to take a look at her brain. Because looking at brains is what they do. But hearing 2 medical folks suggest a brain MRI (which requires 45 minutes of sedation) after you've just barely wrapped your head around 30 minutes of sedation and surgery next week . . . well, it's not a fun afternoon.

We decided not to do it----there's really no reason to at this time. If some other doctor had suggested seeing a neurologist, we'd follow through, but since I just brought us in there, no. If her therapies don't help, and her 1 year follow-up genetic testing doesn't show anything, and we're still at a stand-still in a few months, maybe then we'll go for tests. But now it seems excessive. And we're so tired of tests and evaluations.

Any specialist that you go to will want to run their specialty's barrage of tests. I was an idiot for not seeing that one coming.

And Maya? Happy as a clam. Giggled like a loon when the neurologist tickled her :)

The highlight of the day ----getting asked our #1 favorite question. The geneticist asked us a while back, and the neurologist asked us again today, as part of their standard questions to Dave and I : "Do you guys have any health problems? Any family history of genetic issues? . . . and, Are you two related?" Fantastic.

Monday, April 13, 2009

Easter Pictures

The two best ones:

I'm the cutest bunny around:

"Mom---Dad----OMG, I love this bunny!!!!"

Monday, April 6, 2009

Today we had Maya's case review. Although not surprising, it's somewhat demoralizing to go through each evaluation (5 in all) and hear that she's operating at about a 5 month level. Therapies will likely be 2-3 times a week, for a total of 6-8 sessions per week. A lot of appointments. I'm not feeling chipper, that's all I've got today.

Here are 2 parting videos, in case you're not a friend of mine on Facebook (I posted them to Facebook last week). These are great :)

Saturday, April 4, 2009

Maya's swallow study, in the comfort of your home

Ever sit around, wishing that you would get to go to a swallow study? Well, thanks to Dave's quick thinking (with our digital camera) and the magic of youtube, you can attend one right now! These 4 quick videos will show you the whole thing, from beginning to end. Plus, if you're into sciency stuff, they're pretty cool.

(The results, by the way, were totally normal :) No problems with choking or aspirating her food.)

(Oh, and her pediatrician appointment Thursday went well, too. She's 20 lbs now! She went from the 25th percentile in weight to above the 50th percentile, which is quite impressive considering that she won't eat!)

Here, Dana's in the pink lead gown, along with the speech pathologist (behind the little stand thing) and a doctor (who is in the red lead gown). Dave was in the viewing booth with the technician who was snapping the pictures. The screen that Dave zooms up to at the end is where he video'd the rest of the images.

In video #2, you are looking through Maya's head, shot from her left side. So her mouth is towards the left side of your screen, with the back of her skull and esophagus to the right. For the beginning part of the video she is using her tongue to push around a tiny spoonful of peas that have some barium stuff mixed in to make them visible. Then she swallows (at about 9 seconds) and you can see the little bit go down her esophagus.

In #3, to the left, you're watching her lower jaw move up and down as she drinks from the bottle. On the right side, you periodically see the barium-laced milk go quickly down her esophagus as she swallows.

More of the same, with a little bit of hungry Maya crying in the background, and more bottle-drinking near the end.