Yesterday Namine had a clinic appointment to follow up on her frenectomy. Frenulotomy. Frenulectomy. Just pick a word, I guess.

Recap

You might recall that near the end of last month, Namine had a bronchoscopy. It was planned that during the bronch, Namine’s doctor would see if clipping any of the webbing under her tongue, called the frenulum, would be possible. If it was deemed to great a risk — which would result in another tracheostomy — then the doctor would back off.

During the bronchoscopy, Namine did not appear to be blocking her airway. (Of course not, as she is breathing fine.) The doctor clipped about a centimeter into the frenulum — that was all she dared — and Namine continued to have plenty of room in her airway.

Since coming back home, we’ve spot-checked Namine’s blood-oxygen levels numerous times, especially when she’s asleep. Fortunately, she’s never gone below 94 (which is excellent for a post-Fontan kiddo) and is doing fine.

Fast forward to the present

During the appointment, the doctor found nothing alarming. Namine never shows signs of being in pain due to the clipping, and she has a little more movement now. Not much — it was only a centimeter — but still, a little is better than nothing at all. In listening to her talk, the doctor also said she thinks Namine is making some sounds a little clearer than before.

Future needs

Not so long ago, Namine was cut off from speech therapy. Her therapist concluded in a report to the state that Namine cannot improve any further in speech, and so would not benefit from continuing therapy. We were angry, although that word does not do justice to the emotion we felt.

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Seriously? Seriously.

But now that Namine has a wider range of movement available to her tongue, the doctor is sending her case back to the hospital’s speech pathologist for reevaluation. The doctor believes that Namine can still benefit greatly from speech therapy, and now that surgery has changed the physiology of her mouth, there is a good chance that the state will allow her to resume therapy once more.

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  • Jolene Philo

    Hoping with you that the speech therapy begins again. Thanks for adding this update to DifferentDream.com’s Tuesday special needs link up.