Monday, November 19, 2012
Thought I'd throw this conversation in here for other PRS moms who come here looking for answers PRS Mom 1: The two procedures are the pharyngeal flap and sphincter pharyngoplasty. Your cranio team will do a series of tests to determine the extent of VPI and wether or not surgery will be necessary. We had To try a couple of times with testing because Kate would not cooperate. She had it done earlier this year and she was a little older and did much better. PRS mom 2: Yep, Holly is correct, the pharyngeal flap and sphincter pharyngoplasty are the two procedures often done following palate repair if there is still VPI. All cleft palate kids will sound nasal, because to produce oral sounds, you have to be able to close off the area between the nose and mouth, and without a palate that is not possible. Most kids w/ a cleft can say /m/ and /n/ because those are the only nasal sounds in the English language (other than ng), and so everything ends up sounding like those. It is the oral sounds that are usually distorted or they cannot say because the air stream leaks out of the nose instead of the mouth. Now, if they have correct placement for those sounds (articulators are in correct position), there can be a close approximation of oral sounds, but it still won't sound right if it is nasal. A lot of kids compensate and end up with improper placement because there is no palate or incomplete palate, and then many sounds are really off. Rachel "backed" everything, so even after repair had to have speech therapy for correct placement. In case anyone is wondering what "future" surgeries after the cleft palate may occur. Our eval to determine which we will be having is Dec 4.
Thursday, November 8, 2012
Ellie gained one single ounce between GS appointments. Her leg let her gain 3 lbs, but her illness made her lose 2. Now she's down to 20 lbs 12 ozs. No one knows why she won't gain but he again mentioned the "T" word (feeding tube). Worse yet, her next appointment is Jan 22 - AFTER her surgery to work on her throat. I'm thinking she won't really want to swallow too much after that. I almost feel like she's set up for for failure. Anyway, on Dec 12 he's going to biopsy her throat and see if there's inflammation causing problems. If there is, we put her on medicine depending on what the problem is (sugar breakdown, reflux, allergies). I almost hope that's the problem because I don't want her to have a feeding tube!