Thursday, April 24, 2008

A what?

Nathan's therapist and I have both been doing research to try and identify the cause of Nathan's speech problem. He is very nasal, expends too much air trying to get consonants out and has to breathe in the middle of words. He cheats when making certain sounds and is able to come pretty close to the sound but not quite. and leaves some sounds off completely because it is too hard to make it come out.

So after lots of thought and looking, we have both pretty much come to the same conclusion. We think he has what they call a velopharyngeal insufficiency caused by a submuccos cleft of the palate. In English, the muscles above the palate that control the valve between nose and mouth are not fully formed, they are divided, or the nerves don't reach fully into them. And internal cleft palate.

We discussed this today, and while she is pretty sure (as am I) she still wants to do some more observations so she knows what to look for during the tests. I am finding myself a bit impatient and want to go ahead with evaluations by a cleft palate team in Salt Lake, I understand why she wants to wait. It's hard though. She has observed him twice a week for a couple of months, I observe him all day, every day, for the last 3 1/2 years. Who would know him better? I actually understand a lot of what I read about it, which is nice for both her and I.

So we will plod on with the therapy for a while longer, let her get a better feel for his oral capablilites, and then it's off the ENT for more nasoscopes (fiber optics inserted into the nose to have a look around), this time with little strobe lights and videotaping and such. Whee! And then eventually we'll head down to Salt Lake City and see if they think it can be fixed. Cross your fingers.... But this will all take months to do. I think the Lord is trying to teach me patience. I think I could do without the refresher course.... :-)

But at least the therapist and I are on the same page, and we agree on the possible diagnosis. That's something anyway!

7 comments:

Stephanie said...

Yeah, that would actually make sense, since cleft palate runs in Mark's family. Well, hopefully you can get it fully diagnosed soon and can work on fixing it! In the meantime, I'm glad that you have a therapist who is working so well with you and Nathan, and has made so much progress already.

Rachel H. said...

a WHAT Is right!! What was like, what the heck??

Glad you are in on medical terms and able to help figure out what could be wrong with him.

I sure hope time flies and that he gets things taken care of. I bet he will be a different boy once things are resolved!

Melinda said...

I hate refresher courses. Too bad I need them so often. Good to hear that things are on the way to being resolved, even if they are months in the making. Evie goes in for her eval next week, so I'm a little tense, especially after reading this and realizing that it could go on (and on and on). I hope I end up with your patience if it does!

Joseph & Ashley Danes said...

Waiting can be the most frustrating. I always just want things solved and figured out right NOW! Hopefully they get the ball rolling!

Michelle said...

Melinda, most kids don't end up in years of therapy unless they have a deformity or mental delays. Oren started between 18months and 2 years, and by the time he was three, he was just fine. He just needed some encouragement to get talking. But with Nathan, cleft lips and palates run on Mark's side of the family, and it has taken this long because the Lord was finding us a therapist who could recognize the problem, and had resources to be confident in her diagnoses. Speech therapy really isn't as bad as you'd think, the kids see it more as play than work, and you could even get one that comes to you instead of making you go somewhere. Let us know how it goes, and if you ever want to talk or have questions, I've gone through this lots, and I'm always here!

Calista said...

Waiting for definitive answers from doctors can take forever! But I'm glad that she is trying to be thorough before she makes a final diagnosis on his difficulties. I hope everything continues to move in a workable direction, even if it's not as fast as you'd like :)

Karen said...

It never ceases to amaze me the miracle of how the body works and how much we take for granted. I also am amazed at the extent of medical technology and the many things that they can do! Good luck in all that you will pass through in the coming months in seeing this problem resolved.