Thursday, January 31, 2013

All clear

The boys met with the Cleft Palate Team Specialist today for about 1.5 hours. They loved the exam room with all the toys that were cleverly placed to spark conversation about specific items. The doc had each boy do an exercise with repeating words back to the him, and sometimes he used an instrument under their nose to see if it fogged up - indicating air coming out their nose. The doctor asked us if we've ever heard hypernasal sounds on a consistent basis, and I said I seriously didn't know what everyone heard in the ENT appointment. I felt silly for not hearing 'it'. So the doctor gave us examples, and Jason and I both shook our heads no. But Brady does definitely replace most letters for the D or G, so maaaaaybe some of the sounds were nasalish sounding??? We honestly had no idea.

Jaxon did great. He repeated each word with his little 'impediment' (like he says "cheeps" for chips). After Jax was done, he raised the roof with his hands and then did a little jig, it was SO cute. Then I felt a bunch of anxiety for Brady knowing he was next. I felt like he was going to have to show the room and perform his speech issues. I don't know why I felt so nervous for him?? I mean, he was there for his speech issues...

Brady was so cooperative and the doctor was SO nice. Brady repeated every word the doctor asked, and even though most of them were completely wrong, we all smiled at him after every attempt, and by the end, he too... had a look of pride. I swear I could've just burst out crying and hug him for just trying to say words for someone! I have problems, I know.

The doctor examined their mouths for quite awhile and made most of it into play for them. The doc said that he couldn't find any evidence that the ENT did of Hypernasality or structural issues, so he did not want to perform further testing - NO scope. This is great news! And yet... Jason and I just sat their in silence. I think we both really expected the doctor to find something wrong. And maybe... fix it. Because there is a problem.

But this is not the answer. That's easier to say/type/think now at the end of the day with some clarity.

The doctor then said that Jax has a pretty classic case of Apraxia (the Development Center hasn't tested him for it yet - that will be next week) and that Brady has it as well or it could be a combination of that with a Phonological Speech Disorder. The doctor really loved the boys and we could tell he felt BAD for us because he said he wanted to give us some help in some way. He of course said the boys need extensive speech therapy, and he kind of even seemed to feel bad for even saying that since he could see the boys have been in therapy their whole lives (Jax since birth with feeding and Brady since 18 months).

He asked if Brady was starting to have behavioral issues with his inability to speak. We don't think he is, but he's definitely getting frustrated. The doctor brought up assisted technology and we told him we're waiting for the school to review him and get something in the classroom. We want to model the same program at home, so we're waiting... and waiting.

So in the meantime, we'll keep plugging away. Jax will be seeing the ENT on Feb 18 to recheck his ears since failing his last test, then he has a Feeding Clinic followup/weigh in directly after upstairs (it never works out so nice like that). Before all that, we have the Child Development Center final meeting on the 15th to review everything on the boys, so maybe discussing the possible Phonological Disorder would be helpful at that time. So, maybe more info to help will be coming around soon.

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