Fistula Repair and P-Flap 6-Month Post-Op

Matteo had his six-month post-op visit to check up his recovery from his fistula repair and p-flap surgery back in February. Despite how well his mouth has recovered, he did develop a fistula, or in layman's terms, he developed a hole. The hole appears small, but the surgeon can't tell how deep it goes. The good news is that the surgery appears to have been a success given that the fistula is not impacting Matteo's speech and his p-flap closes off properly to prevent air from going through his nose, which gives him the ability to pronounce a broader range of sounds. At this time, we don't think he'll need another surgery to do a revision to the p-flap, which means his next surgery won't be until he's somewhere between seven and 11 years old when he'll have a bone graft.

The bad news is that despite Matteo's incredible work ethic during speech therapy, his repaired and lengthened palate, his age (he's turning four soon) and being home for a year and a half now, his speech is still nearly impossible to understand. And when I say impossible, I mean that I as his mom have extreme difficulty in figuring out what he's saying. It's heart-breaking to hear him repeat a word over and over again with such persistence and helplessly can't understand him.  

The doctors told me what I already know, that he has a severe articulation disorder. Of the 44 phonemes (the smallest units of sound that distinguish one word from another) in American English, Matteo can only pronounce nine according to his speech therapist's evaluation. His speech includes multiple phonological errors, such as phoneme omissions ("poon" for "spoon"), syllable reduction ("jamas" instead of "pajamas") and difficulty sequencing phonemes in single words. Just like Kiera, Matteo doesn't readily initiate verbally and communicates in one- to three-word phrases at most. 

Aside from identifying that Matteo has a "severe articulation disorder", they can't do further testing on his expressive language skills due to how unintelligible his speech is. So we must plug away at speech therapy and wait until he develops more intelligible speech to be able to identify a more exact speech disorder. 

Matteo is so smart and inquisitive and like his sister, I'm curious what he's thinking and wish he were able to tell me.

Fistula Repair and P-Flap Post-Op

Matteo's recovery from his fistula repair and P-flap surgery has gone so much better than last year and his surgeon confirmed that when we went in for his post-op appointment. His mouth is still healing, but that's to be expected, and why the poor guy has another week and a half of a liquid and then soft foods diet.  But so far the fistula repair is still intact, which is really a miracle, because his surgeon said nearly all children with a bilateral cleft palate (especially to the degree Matteo's was) end up with at least a small fistula. There's still a possibility for that, but with each passing day, I feel more and more confident that we won't see the repair completely fail. The doctor isn't worried about a hole the size of a pencil eraser or smaller, especially if his speech isn't affected and food doesn't come out his nose.

After the doctor's visual inspection of Matteo's mouth and my report that he's snoring loudly, his surgeon thinks the P-flap is healing and doing what it's supposed to do.  Unfortunately, snoring is a side affect of the surgery because when the lengthened the palate, his throat can now be blocked off, which will help him make sounds that would be otherwise inhibited if air could escape.  The snoring will lessen in the coming weeks and months, but sadly for his future partner, won't completely disappear.  His surgeon, who's getting close to retirement and has been married many, many years, gave Matteo a fist bump and assured him that he's done just fine and his wife hasn't kicked him out yet.  Matteo of course had no idea what the joke was about, but flashed the surgeon his beautiful smile for good measure.

We won't know how much the P-flap surgery will impact Matteo's speech until he's completed another six months of speech therapy.  We'll be back in August for the six-month post-op visit and will also meet with his speech therapist at that time.  About 15% of children who've had a P-flap surgery need a revision.  Thankfully, that's an out-patient procedure with minimal pain and "only" five days of a liquid diet.  So a walk in the park for a brave little boy like Matteo.

I'm still in disbelief by how well Matteo's recovery has gone.  I really had prepared for the worst.  However, in the hospital, the surgeon told me that for some kids, this type of surgery ends up not being a big deal.  I can't believe Matteo ended up in the "1 in 10."  We have the advantage that he didn't end up with a double ear infection and stitches that ripped apart, both of which only added to his misery.