Friday, August 08, 2008

I'm ready for my close-up, Mister DeMille...

So we spend almost three hours last Thursday night at Emmanuel Hospital in Portland with Missy, going through the monthly initial cleft-team screening.

Our little miss saw the plastic surgeons, orthodontists, physical and speech therapists, and the ENT. It was a long evening, so we had to repair to the nearby Widmer brewpub for some spicy sausage, beer and spaetzle afterwards. Note to Kelli: if you like, they have a brie wellington in a balsamic reduction that's to die for. OMFG, that little treat redefines "tasty". Their kolsch is damn crispy, too...

Little girl was a star. She never once hid, cried, got upset or shut down. She was so patient with all the strangers peering, poking, and prodding her, talking to her, asking her to jump and play, bending her arms and legs. I'm glad we waited; ten, or even three, months ago she would have lasted about ten minutes before closing down and hiding in Mojo's lap. Now that she's been a daughter and sister for almost a year she's an outgoing little chatty cathy. She drew pictures, pointed out noses and ears, threaded beads, walked ran and jumped - in fact, she LOVED the PT "jumping" test so much that after her PT evaluation was over she pulled the little stool the therapist had used back out so she could continue to jump over and over again. Then used it to climb on a chair. Then used it to climb Daddy's knee. Then she took me by the hand and had ME jump off the stool and followed right behind me.

The good news: eleven months post-orphanage Missy is fully within the "competent" range socially, physically and medically she is developing well towards a date with reconstructive bone-grafting in about six or seven years. Her upper teeth are coming in as well as can be expected with the alveolar cleft. The medical team all felt that she was very healthy and not in need of additional medical monitoring unless the ear infection problems returned.

One interesting note was that none of the physicians felt that the "milk that goes in the mouth comes out the nose" thing we worry about was a) a serious problem, or b) contributing to the risk of ear infection.

The semi-bad news: she is developing several bad speech habits, probably related to the malformation of her upper teeth and hard palate, including vocalizing "D" and "T" sounds in the back instead of the front of her mouth. So "doggy" becomes "goggy" and "Daddy" becomes not just "gaggy" but "da-da" pronounced "gje-gje" (it's a hard sound to write, because it's not a pure "g" sound, it's a wierd,
gutteral somewhere between a "g" and a "j"). The ST liked the amount of language we were using with her - no problem chattering in this house - but gave us some tips and strategies to use for her. She wants to see her again in six months to assess the need for formal speech therapy.

Overall we came away with several thoughts:1. It's difficult to figure out from the outside where to go to get help with SN-kid issues. AND both process and results are so dependant on the right-this-very-minute kidlet stage. This assessment was SO much more complete than the one Mojo and Missy got at Shriners. And yet, I'll bet that if we had tried this with Missy 90 days ago it would have been much less productive and MUCH more difficult - picture trying to force open the mouth of a screaming, frightened, uncooperative child and you get the picture.

2. OTOH, some SNs are less special than others. Missy's is really
relatively simple.

3. Sometimes simple is hard. We could be headed for trouble if the
ear infection thing comes back. The solution apparently is artifical conduits for the eustacian tubes, but these are a surgical procedure that needs to be done under anaesthesia. Apparently circa 2008 it's usually done during the cleft repair. For some reason it wasn't done for Missy in China. This accords with my perception of baseline medical care there as 15-20 years behind: they're where we were in the 1980s.

4. She's ready for her close-up. We really have a very happy, warm
and loving little girl. We spend so much time refereeing or organizing or whatever between the two that we often don't spend much time with our little girl alone. It was a pure joy to be able to just play with her in a way that, honestly?, we haven't been able to since the playroom in the White Swan. And you can imagine the difference a year makes with that.

Hope this is of some use for those of you going or thinking of going the SN route. And, just as a by-the-by, a weary sigh for the latest round of referrals. It just seems so...so. I just don't have anything good to say. So I won't.

5 comments:

chris said...

she is so darn cute and sounds like things are good on all fronts. they unfold so much that first year, its hard to measure how much they actually become themselves until you look back.
chris and girls

You Know Where You Are With said...

The ear tube surgery is a snap--a 15-minute procedure. There is the anesthesia, but it's VERY quick. And Em was eating french fries an hour later.

Glad to hear her clean bill of health!

Maia said...

Yeah, the ear tube thing is nothing to worry about at all. FF had hers done a month ago and it was over before we even knew it. I don't think they are done very often for the kids at the SWI's in China, though.

Not that you asked for advice, but the earlier you can get speech therapy going, the better. I'm going to hazard a guess that just about every kid who is cleft affected needs speech therapy, and it's easier to start them young, before some of the bad speech habits are really formed. I'm not sure how Oregon's early intervention programs work, but here in NY it is SO easy to get the help you need - for free. All the professionals come to your home and practically fill out the paperwork for you, and because FF was cleft affected, she automatically qualified for the program. We have a fantastic woman who comes to our house twice a week, for an hour each time, and just sits on the floor and plays with FF - all the while working on her speech. FF loves her, I can see (or rather, hear) major improvements in her speech since she first started ST, and I'm so glad to have started this now, while she's just starting to speak English, rather than later, when things might be a little harder to undo.

Congratulations on her good health! She is adorable!

FDChief said...

Chris: I am amazed at the difference, and so happy. She's just enjoying her life so much more.

YK: That's good to hear. My personal suspicion is that we'll be getting the tubes.

Maia: We've had the IE people in twice and both times they weren't eager to get her in - a lot of that had to do with her unease and unwillingness to cooperate at that time. We do want to get her ST started this fall. Until then the therapist has given us some good ideas to use to get her doing better.

Fasteddiez said...
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