Friday, July 20, 2012


Dean had a sleep study last night, I believe it was #7? We won't hear of the results for another week or so. I'm hoping that we really are good in this arena and can get a little break for a while. I barely slept last night even though Bob went with Dean, just because I hate these sleep studies and the waiting that occurs. I've gotten better about the waiting since Dean was little and we had to wait the longest three weeks of my life to find out that the clinical PWS diagnosis was, in fact, substantiated by DNA testing. I'm better about being able to forget about the waiting sometimes and meaningfully engage in other activities. I'm not just completely paralyzed. But still, I hate it.

Dean's therapy scheduled has shifted around lately due to changing staff, vacation schedules, etc. One of the SLPs who filled in while his usual SLP was on vacation was mentioning how nasal Dean's speech is. We got to talking about Dean's palate and how very high and arched it is. This has been the case since he was born. We talked about something called velopharyngeal incompetence that can be related to this kind of palate and how it would prohibit someone from being able to make certain speech sounds clearly. Other people with PWS have this and some have had surgery to help with speech because of it.

Is this the answer to all of Dean's speech concerns? I doubt it. But if something anatomical is going on that would be a barrier? Well, then it's worth looking into. So next Wednesday, we have an appointment scheduled with Dean's ENT again (the one who did his tonsil/adenoid surgery) to look more into this. If it doesn't lead us toward a solution, it would be great then to rule it out.

Dean's speech is one area that I'm just getting tired of waiting. He is making progress, but it is so very small and so very slow as to seem like the trajectory is going to hit its peak in 80 years. As the gap between what Dean knows (because his cognition and receptive language *are* growing, and well) and what he can actually *say* widens, my heart hurts more and more to hear his voice. I know God knows that we are working so hard (Dean *and* us) in our waiting, and I pray that part of his plan includes getting to hear that voice more one day. But I can't pull out my planner and schedule a date. I've tried.

Psalm 130

Out of the depths I cry to you, Lord;

2 Lord, hear my voice.

Let your ears be attentive

to my cry for mercy.

3 If you, Lord, kept a record of sins,

Lord, who could stand?

4 But with you there is forgiveness,

so that we can, with reverence, serve you.

5 I wait for the Lord, my whole being waits,

and in his word I put my hope.

6 I wait for the Lord

more than watchmen wait for the morning,

more than watchmen wait for the morning.

7 Israel, put your hope in the Lord,

for with the Lord is unfailing love

and with him is full redemption.

8 He himself will redeem Israel

from all their sins.


Candice said...

I hear ya on the waiting for speech to come. It is finally starting to come along for Graham, but sometimes it feel like a snail's pace.

Barbara said...

Ali, my grandson is going to have the VPI surgery soon, first having his tonsils & adenoids out. I have listened to other parents of kids with VCFS (his syndrome) who have had the surgery & it is supposed to be the best thing for improving speech (VCFS kids have nasal sounding speech too). If your doctors recommend it you could talk with other parents of kids who have had the surgery. There is a Facebook page for VCFS where people post about issues, including the surgery. According to most of the parents, the surgery really improves the child's physical ability to speak & make the appropriate noises in order to articulate the proper sounds. Hope it all works out. Praying for you.

Ali Foley Shenk said...

Barbara, very interesting!! Thanks for sharing. I'm really curious to hear what the ENT says. Is it a plastic surgeon who is going to perform the surgery?

Candice, so great to hear that Graham's speech is coming along! I'm just not patient (as you know), but even this is just feeling like too much to bear at times.

Kimberly said...

Hi, I can't remember when I stumbled upon your blog, but I have been reading it ever since. I was wondering if you all have worked with him to sign? I know speech is your goal, but sign can be great at bridging the gap between what he knows/wants/needs where his speech is lacking at the moment. I've met countless kids (PWS, Down's) that use sign while they wait for speech to come. I'm an American Sign Language interpreter for the deaf and hard of hearing but have worked with kids on the side who sign but can hear. Another option id one of the multitude of apps for the ipad that have picture communication that he would touch and it would speak for him. I've seen those used but I'm not too familiar with them. Neither of these options should impact or delay his speech development, just help to bridge the gap while it develops. I'm sure your providers have talked to you about this, but I wanted to share just in case.

Ali Foley Shenk said...

Hi Kimberly!
Thanks for your feedback. Yes, we do sign with Dean, and we have used many of the communication apps on our iPad. Dean is actually getting a NovaChat, which is AAC that he really seems to click with. So, he has ways of communicating, just not much through speech just yet. It's hard to believe it will ever come.