She's Out with A Pout!!!

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She's out of surgery and Dr. Kelly believes it was a great success. We had some concerns when his intern didn't know anything about the combo p-flap/sphincteroplasty, and didn't get to talk to Dr. Kelly until afterward. But he did do the combination. So, basically, they've made a purse string in her throat along with taking some tissue from the very back and making what's kind of like a curtain. These two things should help her regulate air and improve speech.

Right now, she's pretty doggone angry, and fighting the IV and pulse-ox tape pretty hard. Each arm has two no-nos (kind of like splints to make her unable to move her arms) with socks on top of those because she's such a Houdini. She's already wiggled her way out of all of that twice, so we're taking turns keeping our hands on her to prevent her trying again.

Her mouth is pretty bloody and swollen, and there's a little bit of bleeding coming from her nose, but those were both to be expected.

We're in PCCU right now and will be here until, at least, 9am. We hope that we'll be able to get one of the family sleeping rooms (with shower and private bath) that they give out on a first come first serve basis (based, in part, on how far away you're from - so we're pretty likely to get one). That way we can take turns resting throughout the night.

Thanks so much to everyone who's sent love and prayers and good wishes. We really appreciate it!!!

Much love,
VeeGeesMommy, K, & VeeGee

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Why Not Sign?

I just had this conversation with VeeGee's ST (speech therapist) yesterday about whether or not we should be focusing more on signing with VeeGee to help her communicate. VeeGee has been taking fish oil for about three months and her language ability (caveat in a moment) has increased dramatically. What I mean by ability, though, is that she is stringing longer and longer sentences together and clearly producing much more abstract thoughts/statements. Problem is, her apraxia itself has not improved enough to make her speech any more intelligible. In fact, because her sentences have gotten so much longer and now include non-concrete things that aren't in the immediate vicinity, she is actually harder to understand. Pair this with her increased desire to communicate, and you can imagine the mounting frustration.

Anyway, I asked her ST about whether or not ASL would help VeeGee and she said that it wouldn't necessarily be the best use of time/resources for her because she would have such a learning curve to catch up with the words she's already "using" that it might actually slow her down. Also, she said that it's important for VeeGee to keep trying to verbally communicate, since not everyone is going to understand her with ASL anyway, and so her frustration at not being able to say/be understood wouldn't necessarily go away. Finally, she suggested (a while back, and we have ordered) a augmentative communication device which, she thinks, is going to do more to help her with the motor planning aspect of her apraxia (because of the time/planning it takes to find the correct button) PLUS it will give her a "voice," which she can then mimic.

Now, if VeeGee had had a better foundation pre-verbal with ASL the story may be different, but that's not the case. When she came to us she was using a very limited amount of sign but immediately abandoned it whenever a verbal approximation achieved the communication that she was attempting. I think it has to do with the impulse that children with apraxia have. It's my understanding that, generally, the desire is pretty high to be able to communicate verbally and the outlet that ASL provides is still just a band-aid - a good band-aid in many cases, yes, but not always, because it doesn't actually treat the problem but rather is simply a coping mechanism and/or stop-gap.

Velopharyngeal sphincter reconstruction for VPI/VPD

We had our (I say "our" which is kind of funny, huh?!) nasal endoscopy yesterday (she was such a CHAMP!!!!!!). They found that VeeGee has an enlarged adenoidal pad, which actually works in her favor, strangely, because she is not closing the gap at all. Her soft palate is raising a bit, but the muscles to either side (I can't find the name for them anywhere) are not moving at all. SO, she is not going to be a good candidate for a pharyngeal flap because that would still leave gaps on either side of the flap. The SLP suggested a sphincteroplasty instead. Problem is, that would require removal of her adenoids, which are currently helping her.

I'm not finding much info on it at all. We're supposed to be meeting with the plastic surgeon again on Monday (ANOTHER 3 hour drive to Nashville) and I'm wondering if that's really going to be necessary since he's the flap guy and our other ENT/Otolaryngologist is the sphincteroplasty guy.

I hate the idea of another surgery, but, at the same time I do want to keep pushing ahead with the things that are going to increase her speech abilities. Also, I'm uncertain about our future insofar as jobs/insurance/location go and I'd really like to take care of as many things as I can as soon as is feasible/desirable in case we don't have access to these doctors and this hospital that we love so much in the future.

Okay, that was a total ramble . .

Social Rejection

In some ways it was easier when VeeGee had her trach, because there was a clear outward "signal" that something was different. Now, without it and because of the jaw distraction, only her size signals something different (until someone speaks to her, of course). What we were noticing tonight is how she just doesn't try to communicate with her peers verbally. Her only words are "uh huh" AND "uh uh."

So someone asked, “Can you find some other families with special needs children for your child to make friends with?” Well, you know, that can be problematic for several reasons. One of the main issues, for us, is that we want her to be able to mimic the speech of typical kids as opposed to other kids who, like her, have a difficult time speaking. Also, well, I'd like her to be able to live in the "real world" and not a little enclave of SN people. Besides, the spectrum of special needs is as broad as the spectrum of typical people - so it's not like you can "go shopping" for someone who is just like your kid.

I know that wasn't mean to be offensive, but, I have to say, it kind of was.

For the record, VeeGee has always been in a school with 50-50 kids with SN and "typical" kids. I am most certainly NOT living in any sort of fantasy world about that (well, beyond the occasional, "Wow, this is our reality" kind of thing that, I'm guessing, is something at least SOME of us feel at times).

One thing that I think informs my feelings on this subject is the fact that I have a 16 year old brother who has Down Syndrome and I have seen him in both sorts of situations: inclusive and not. He spent his first thirteen years in schools that were completely special needs oriented - though my parents worked very hard to have him involved in extra-curricular activities where he could also be around "typical" kids. Now he is in a school that is primarily a typical school, and he has a few peers who have special needs.

What I have seen, firsthand, is the way that he has really thrived in both environments, though, now, as he grows older, it is entirely appropriate for his world to begin to expand to include all types of people because - fact of the matter: he will have to live in the "real world" at some point (hopefully!).

As to the quality of relationships that he experiences, and the concern about their potential superficiality, I think, truly, that he experiences most relationships just as they are. He most definitely has real reciprocal relationships with typical kids. They are no more "superficial" than the relationships most people have with each other. Obviously, they are different than the relationship two typical teenaged boys would have with each other, but I don't think they are qualitatively less mutual or rewarding.

I am not looking for my daughter's friends to be her therapists. I am, like any mother, hoping that she will be able to learn good things from her friends. All mothers, I think, try to facilitate relationships for their children which they think can benefit them. Why is it wrong for me to want my dd to be around children who are modeling a strength/skill which she lacks? That doesn't put any onus or burden on her friends to be anything other than exactly who they are. F what it's worth, VeeGee's two "best friends" (insofar as kids her age have "best friends") are typical girls who, somehow, understand her attempts at language. They play and "talk" to each other.

I don't disagree that it is/will be important for her to be around and have the support of other children with disabilities. She gets plenty of that even now through her daily therapies (several of which involve group play) and through playdates and whatnot. I'm not trying to pretend that she's not disabled - that would be virtually impossible - I just want her to have access to as many types of friends as she can have - black, white, special needs, disabled, typical.

We were at a party the other day with some of VeeGee's typical friends. I'm noticing the deepening chasm between her ability to communicate and theirs. It's making her more and more awkward. One on one she does really well with typical kids, but in this particular situation (which was uncommonly frenetic - a birthday party in a very small house, with no outside access) she just defaulted to "playing monster/tiger" and chasing the kiddos around. It was cute at first, but then dh and I both realized that it was continuing because VeeGee just didn't have any other way to interact with the other girls there. Cognitively, she functions on their level, which is what makes this harder, I think. So, we're wondering, "does she know that they're ahead of her verbally? How might that make her feel?"

Catch Phrase

VeeGee has been saying "oh mo mo may" forever. I never knew what it meant until the other day when I was watching Diego with her. Turns out she was saying "Ayúdame" - which means "Help Me."

Great! I've been ignoring her pleas for help all this time!