Finally some answers!!

Azlan is now in speech therapy weekly. The new therapists came this week, (they didn't tell me they would need to be here for 1.5hrs...it was delaying naptime...rrrr). Of course she noticed Azlan's severe drooling and asked if we had answers on that. I told her my frustrations and how I've brought it up at least 3 times in Seattle with our craniofacial pediatrician and the surgeon (since it climaxed after palate surgery) and no one had answers, their only suggestion was to use a medication that has a sideeffect of dry mouth. If you know me well, you know that is going to be my last resort...which is why...1 yr after the rx was prescribed I've still never had it filled. Don't get me wrong, not anti meds at all but seriously...can we find out WHY he's drooling before we bandaid it?

So...the therapist tells Azlan to mimic her funny faces. Then she sticks out her tongue. He copies. She moves her tongue from side to side...he shook his head from side to side. She put her tongue up and down...he nodded (thinking he was copying her). She turns to me and says (as she's writing notes) "there's part of the problem, his tongue is extremely weak" !?!? Are you serious!??!? I go to one of the top 10 children's hospitals in the country and the SPEECH THERAPIST figures out the problem!? Obviously the tongue is a muscle and you need a properly functioning tongue to swallow your saliva all day long. Not saying he doesn't over produce saliva, but he's definitely not swallowing often.

Then she gets me to give him a little piece of an apple. We watched him chew. He moved his jaw up and down. No side to side motion while he eats at all. He spit out the peel after choking a bit on it. She also noticed he never coughed while choking on the peel...his eyes watered and his face got red. She said he has a very weak mouth - he doesn't chew properly, you can't eat well with a up and down movement and no grinding motion. Yet thats all he has. Have I noticed that? I have actually but I thought "I guess its ok".

She also asked if he's had a barium test done to show how things go down when he does swallow his food. She wonders if his passageway is narrowed. AHHHH this is all making sense now. Think back to post palate surgery when we were airlifted to Seattle and all they could guess was wrong is they kept wondering if his passageway was affected by his Hemifacial Microsomia. WHY DIDN'T anyone order the barium test so we could FIND OUT?!!? I have no idea, but we will be getting it done now. So many things seem to be making sense and its just kind of sad to me that it takes a speech pathologist, who sees him for the first time 2 days ago, and in 10 minutes figures all this out!!!

So what next? We will be doing exercises to strengthen his tongue, she said it is not a fast results kind of thing but hey its what we need to be doing right now and I'm sooooo excited to have found something we could work on in the drooling issue!!!

On a side note, a new lady I'm working with in our business is a Xray tech...and she said she does this barium test all the time on patients and also suggested an xray of his face...it would be great to monitor the hemifacial and see if it gets worse etc.

This is just so wonderful to hear, you do not even know. As Azlan gets older, it seems to get more and more socially unacceptable to be a severe drooler. Many times as I pick him up from sunday school, a passerby will stop and say "wow, someone has enjoyed the water fountain today" and its NOT...its drool. Of course I smile...and keep going. But its 2-3 shirts a day he goes through and like tonight...he starts to rash a bit by the end of the day just from the wetness on his chest :(

I'm so excited for my little boy!!! Poor child, no one has ever noticed that he simply lacks the strength in his mouth to do the things we all do regularly. The Speech Path. also said its very much related to his cleft, his mouth just doesn't have the same muscle tone or ability that a non cleft child would have. Yet. We'll get him there :)