We saw the ENT today because of questions regarding Maggie's hypernasality. (That means her voice is coming from her sinuses instead of from her throat.) The hypernasality was of sudden onset following surgery. The problem is not as bad as it was prior to her palate surgery six years ago. It's also good that there's been some slight improvement over the past five weeks. The doctor said we need an in-depth speech evaluation, an x-ray movie of what's going on when she's speaking, and possibly a visual look via the camera they thread through your nose. It will be an all-day appointment. He said he was hopeful that something as simple as a few months of therapy might be able to get her speech back on track and prevent it from deteriorating. With the sudden onset of the change, he's hopeful that it can be fixed relatively easily. (Right now, a few months of speech therapy -- with 60 or more minutes of driving for each appt -- does not sound "relatively easy" to me!)
He did not offer any explanations of what caused this change in Maggie's speech. He did say that occasionally use of the heart-lung machine may cause small clots that could lodge somewhere. He said these clots can cause memory loss, or minor stroke symptoms, or partial paralysis. So he postulated that there may have been something that interfered in a small way with her ability to move her pharynx and palate. But that's just a guess.
He also encouraged us to bring her in for the "VCFS Clinic" which pulls together all the specialists that would be needed for kids with VCFS. This is where the decisions become really difficult. One of the reasons Maggie is doing so well is because we're not doing what is "supposed" to be done with VCFS kids. On the one hand, we don't want to ignore problems that could be helped. On the other hand, sometimes the help brings with it side effects (from drugs or therapies) that outweigh the benefit. So this is going to be a gut-wrenching decision.
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Jennie has been pleased with the VCFS clinic for Krista. The ultimate decision to DO something rests with you. Can you just look at it as input and then you decide the output?
ReplyDeleteIf I believed it were that easy, then the decision would be much simpler. We've had run-ins before with one of the people we'd have to work with at the clinic. She made it very plain that she considers us to be abusive parents for daring to homeschool a special-needs child. She told me point-blank that she cares more about Maggie's education than I do.
ReplyDeleteSo we could go to this clinic with the stipulation that she stay far away from us and Maggie's charts. Or we could go to this clinic and hope that she's lost some of her arrogance and animosity. Or we could go to a clinic (probably in New York or Philadelphia). Or we could just rely on our family doctor instead of specialists.