Wednesday, June 1, 2011

We have a (another) diagnosis.

We finally had our appointment with the craniofacial specialist, Dr. Riski, in Atlanta. He was great. Right off the bat, he mentioned that hypernasality (putting too many words/sounds through the nose) is often related to hearing loss. That happens to be the very reason we are just now seeing about this potential problem – it’s just not all that common to have a kid with hearing loss and a palate problem; in fact, the Early Intervention Specialist for the hearing impaired at the school in Atlanta where we took Blair once a month had never had a kid like Blair in all of her 20+ years.

Blair was super sweet for the appointment and wanted to look in everyone’s mouth and ears with the light. Dr. Riski said that her mouth structures appeared normal. She didn’t have any of the external signs of a submucosal cleft palate – like lack of a midline, discoloration in her mouth, or a split uvula.

Blair talked for them some. I was actually impressed at how cooperative she was – she basically said everything he asked her to say. We also talked about how she wasn’t able to blow out of her mouth unless she held her nose. Classic sign of a palate problem.

When we got to the x-rays Blair was very sweet and didn’t protest too much at all. The “princess chair” was a whole lot better than the plastic chest x-ray contraption she’s been placed in one time too many!

From the images, Dr. Riski said that Blair does have basically what he would call a microform of a submucosal cleft palate. This basically means that the muscles in the back of her mouth are not sufficiently formed. Explanation from the Cleft Palate Foundation: “A submucous cleft of the soft palate is characterized by a midline deficiency or lack of muscular tissue and incorrect positioning of the muscles.”  She has musculature, but it is very thin. This makes her pharynx too wide, which is why she can’t use the muscles to close it to stop sounds from escaping through her nose.

This is Dr. Riski’s “preferred” problem, if you could say that. It is usually treated with a surgical procedure. We have another appointment (forever from now, it seems) to meet with Dr. Riski and the surgeon to do one more diagnostic/exploratory procedure – endoscopy. They will put a camera in Blair’s nose to look at the structures so that they know exactly what they are working with before making a final decision to do surgery. After the surgery, she will still be in speech therapy. She’s got hearing loss and bad speech habits to overcome, so it will be a process.

So that’s what’s going on with her speech. I feel good about what we’re doing. I feel like the Lord has led us to the right places, although we’ve taken a really long route! The hearing impairment really complicated and delayed the diagnosis palate issue, but we’re on the right track now!

Lately – I guess mainly because it’s summer and we’re getting out a bit more – it’s weird being around people that we don’t see very often (there are LOTS of people who have never seen Blair so this is very common!). I feel like I have to explain that we are aware that Blair is hard to understand and that we’re on top of it! I can’t help but wonder if folks are thinking, “Do they know that no one understands their kid?!” Not that it matters what anyone else thinks, but you know…. All parents can be oblivious to things with their kids at times, but we’re aware of her speech (for the most part). But since I speak fluent Blair, I do forget how hard she is to understand sometimes. Until I have to rack my brain for the word she’s repeating over and over.

Speaking of repeating… toddlers do this, right? She will ask a question 1500 times in a row. I will answer it the first few times, then I will ask her the answer. And she gives it to me. But then she keeps on asking…..

At the pool…

Blair: Where they go? (the kids who were there the day before)

Me: They went to Atlanta.

Blair: Where they go? (3 seconds later)

Me: They went to Atlanta.

Blair: Where they go?

Me: Where did they go?

Blair: They went to Atlanta. (phonetically, I’m clueless how she says this.)

Blair: Where those goggles go?

Me: They took ‘em home.

Blair: The goggles?

Me: They took ‘em home.

Blair: The goggles?

Me: Where are the goggles?

Blair: They took ‘em HOME. (she says this pretty good)

Repeat many, many more times.

The other thing we are dealing with right now is the end of early intervention speech therapist who comes to our house and Blair loves, the end of our Georgia Pines hearing impaired advisor who also comes to our house and for whom Blair also does very well, and a job relocation by our private speech therapist who, you guessed it, we ADORE. Boo. When kids are this age and doing well, you don’t won’t to mess up a good thing. But I’m sure we will find someone who will be wonderful. We will be working with the school system for speech as well as someone privately. Please pray for that in the coming months as Blair has to make these big changes. The limited availability of speech therapists with hearing impairment experience around here makes the situation even more complicated. She warms up to people pretty well, so I hope the change won’t be too bad.


Courtney said...

Ash, She's so precious! I'll be praying for her (and you too of course!) I still need to meet her though! :)

Shane said...

Ashley, I will definitely be praying for y'all and that sweet, beautiful Blair in the coming months! I'm so glad you were able to get some more detailed answers as well! You've had alot of peeps in your corner since day one, so hang in there! Love to you all!

AA said...

You guys are such troopers! So great that Blair goes with the flow. Will be praying for you for both the surgery and for finding great therapists that you and Blair love!! XOXO

Candi James said...

I will be praying special prayers for Blair and that you find the perfect therapist for her. I do agree that you and your family are in the palm of GOD's hands and you are doing exactly what he wants you to do! That child is a special gift from GOD and I just know that HE will take good care of her!

Sounds like to me that Blair does adapt pretty doggone good to changes. Just hang in there and try to float right on with them.

I can understand why you feel you have to explain the speech problem to people....but you know if you could just not worry about would be one less worry :-) You and Brad sound like wonderful parents that are taking such sweet care of a special child. Anyone who is around Blair has to just adore her. I have never personally met her but I am loving getting to know her through Jan and your blog!

Nothing can make you feel any better than when you see that GRAND SMILE she has! That smile has to make the problems a whole lot "lighter" feeling if not temporarily forgotten! Blair has a smile like no other!

Kate said...

Hang in there -- we're all rooting for you!

jmluckie said...

At least you're getting answers that can be dealt with.Good luck.

Marie said...

So glad you have some answers - it makes anything seem more bearable when you know what you have to deal with. I know you will find wonderful resources for Blair because you are a great mom! But I bet you will miss "Blair language" once she is speaking liking everyone else in Georgia :)

The Lucy Family said...

Hey Ashlee, I saw where you commented on my blog=) I love reading blogs and yours is one of my favorites!! Blair is completely adorable. You can just see that she's a happy & sweet girl! Sounds like y'all are getting lots of answers that you were needing and glad. We will continue to keep her in our prayers. I'm from Georgia too (south ga...Folkston) even though I now live in Charleston. Reading your blog reminds me of my "home." Love it!

Jen O'Daniel said...

I'm glad that you've gotten some answers. No one wants to hear their child has surgery, but you are so great and such an advocate for Blair - and you are not stopping until you get answers. Go Mama Ash! Sounds like this doctor was great - glad the appointment brought some clarity and glad Blair is in his care. Keep up the good mama business! You rock!

Stinks that your therapists are leaving you, but I am sure that you'll find new ones that you love. Besides, Blair is about as easy-going as it comes, so I bet that she will get along great with whoever is next!

As for the 20 Questions game... yes, been there, done that. Yes, been there, done that. What have I done? That's right, that's what I did. ;)

The questions just keep on coming - and while I usually entertain them all, there are times where I go, as Grayson puts it, "Coo-coo!" :)

Hug Blair for me! And give yourself one from me, too!

Karen said...

Hi Ashlee,
My name is Karen and I came across your blog while reading Kelly's Korner SUYL Fridays and I'm so glad I did. I am studying Speech Pathology right now at Appalachian State and I think its really neat that you are comfortable sharing her diagnosis on your blog. I'll pray for your family in finding a new therapist. I can't wait to be helping out absolutely adorable children like Blair! I'm sure she will grow leaps and bounds with her speech and hearing after therapy :) God Bless,