until we got to the scope room.
The ENT placed a thin scope in her nose so they could watch the mechanics of mouth while she was talking. All quick and easy unless the patient won't actually speak. It took about 10 minutes of a tense standoff between D and the therapist, but ultimately, she did repeat the sentences and within 20 seconds she was done.
So here's where we are
We need to schedule an appointment with our local ENT to get her tonsils removed. I am not looking forward to this at all- when A had his out he was miserable for a complete 2 weeks.
Then 6 weeks (or more) after the tonsils are removed she will have a second surgery to create a flap in the back of her throat so that she can keep the air from escaping through her nose when she speaks (this should dramatically increase her articulation) She will have to work with her local speech therapist to unlearn some of the bad speech habits and how to work her new flap but they expect normal speech (eventually) We are not surprised by the recommendations but were not planning to do the p-flap at a hospital 2 hours from home. They will keep her in the hospital for 3 days (2 nights) and then we will have to go back a couple of times for follow up. However, as much as we love our ENT and don't want him to feel like we are cheating on him, this team does this surgery a lot- it's a specialty there- and it has a "higher than the doctors would like" failure rate so it is important to go with someone who really knows how to do it. Plus our local team prefers to wait until the kids are older to do it, which makes no sense to me from a learning speech correctly standpoint
Now comes the crazy part of trying to schedule everything- this is the one part of working full time that stinks- feeling like I need to be at work to impress my new boss and needing to take possibly up to a week or two off. Hopefully we can schedule the tonsils the week before my spring break so the second week I will already be off. Luckily we haven't booked anything for our trip to DC at the end of March since it may not happen now.
Just another day in our crazy life
4 comments:
Sort of a mixed bag of news. You know if there is anything we can do, let us know.
Is the flap something that should be there and isn’t, or is it an intervention to create something that normally wouldn’t be present, but is necessary to deal with her problem? Talk to you later. BTW, can you change the background back to what it was? The new background makes it very hard to read and washes out the pictures. /s/ the old man.
The problem is that because the shape of the back of the mouth was altered by the cleft the part that closes the airway for speech normally is way too small to fill the opening she has so air gets around it. So the flap creates something to augment what she naturally has so that it works correctly.
And I changed the layout- see if that it better
Hmmm, not sure how I got to your blog but it is the first place I've seen Velopharyngeal Insufficiency so I'll be following closely for now on. My wee guy has an appointment at the Children's Hospital (soonish???I hope???)to look into the same thing. Not sure how they are going to assess him since he isn't saying much. Did your daughter have any swallowing issues? Or nasal vomiting?
Glad you found us- feel free to follow along on our crazy ride. She did not have swallowing issues and had some mild leakage from her nose until they closed her palate- then it pretty much stopped. I don't know if they can assess them if they aren't talking, although I have a friend whose child only said one sentence "take it out" (so they would remove the scope) and they were able to assess from that. They wanted DW to say about 16 different sentences. I think that is part of why they didn't do the assessment last year.
Good luck with your little one
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