handsful

Lainey proudly showing off the sticker Dr. M gave her on Tuesday.

Lainey had an appointment with a new ENT this week, to check on her ear tubes. Turns out her left one is still in and working, but the right one had fallen out and imbedded in some wax. He used a torturous looking device and pulled it out. Lainy winced and whimpered a bit, but she was so brave :) The ENT said her ears look fine, no fluid, so there shouldn’t be any need to replace the tubes when they both fall out. Great news.

I thought I’d do a quick medical update on where we are with Lainey’s cleft, future surgeries, etc. Hang on, this gets long…

Like I’ve mentioned before, Lainey is an on-going patient in our areas Cleft Palate Clinic, and is seen once a year by a team of professionals who make decisions about her ongoing care regarding her cleft issues. Her last clinic was this past February, and I got a call sometime later tellling me their recommendations based on everyone’s evaluations and their discussions about her case. Seems there is some disagreement among the team on when to repair her fistula. Backing up, her fistula is basically a hole that opened up in the middle of her hard palate, shortly after her palate repair last May…think of the seam in the backside of someone’s pants splitting – it always happens in the middle, right? Where it’s the tightest…Bad visual, huh?

The fistula makes it impossible for Lainey to build up air pressure in the her mouth for sounds like “p” and “b”. Thankfully, even with the fistula, she can blow air out (i.e. blowing bubbles) and suck through a straw, though it’s hard for her. The lead speech therapist on the cleft team thinks her fistula should be repaired now. We recently had a meeting with her plastic surgeon (who did her cleft surgery) and his recommendation is the wait 6 months and see what speech progress she is able to make between now and then (she has speech 1x per week for an hour), and re-evaluate her then. His reasoning is that she doesn’t have enough speech yet to determine whether she may or may not need an additional surgery, called a Pharyngeal Flap surgery, which he would prefer to do at the same time as the fistula repair. P-flap surgery is done when the child has hypernasal speech, which is common for cleft kids.

Are you still with me? Today, when we were with her regular speech therapist, we discussed whether she sounds hypernasal now and she (and another therapist that she called in to also listen) decided that she isn’t overly nasal at all. Good news. The therapist also said that she didn’t see any harm in waiting the 6 months that the plastic surgeon recommended…the same position that the ENT also agreed with on Tuesday.

To throw another thing into all this is a device called an obturator. Think of it like a retainer, that fits onto the teeth and has a piece that completely covers the palate – like a false palate. That would “fix” the air pressure problem without doing the surgery right now and allow us to not lose time on her speech development in the meantime. My next call is to the dentist, to see what he thinks about this option. I’ve talked to other moms of cleft kiddos who have had these with great results. I just don’t want to put Lainey through anymore than needed, but also want to take advantage of all the time we have to improve her speech.

If you happen to be in our “boat” and have dealt with these issues before, I’d LOVE to hear you take on it all. Obviously, we want to do what’s best for Lainey. Her speech is improving, but MUCH slower than we anticipated. Maybe we were naive, thinking she’d just start talking our ears off after the surgery – we’d heard stories of cleft kids who did just that. Lainey’s sign vocabulary increases almost daily (her favorites right now being “now”, “I love you”, and “potty”). We get mixed opinions on that as well. Some frown and think we’re having her rely on her signs too much, others are happy to see her communicating AND vocalizing at the same time (which is always our emphasis – that she approximate the word WITH the sign). We have never regretted teaching her sign…can you imagine the hissy fits we’d be getting right now otherwise??

Okay, I’m done…thanks for hanging in there. It’s nice to have you to bounce all this off of ;)