Monday, April 13, 2015

Surgeon, Speech & School...

Maggie & I saw her plastic surgeon and the genetics team this morning at Children's Hospital for a follow-up visit.  They are pleased with her growth and development and we got some more information on what's to come.  
(Side note: at one point there were SEVEN people in our exam room, plus Maggie and I.  The surgeon and his people and the genetics team.  Two of them were madly typing everything that was discussed on computers.  It's a little crazy/surreal at these appointments!  If only we could throw in the ENT, dentist & pediatrician at the same time, we'd have a lot less appointments!)

Surgically, we're hoping to not have to do anymore surgeries for several more years. Sometime around the age of 5-7 years, she'll have a pretty major surgery, where they'll do a bone graft in her upper gum to create a gumline where she has none.  There's a chance that at that time they may also do some corrections to her palate to better faciliate speech, as well as some touch-ups to her nose/lip and possibly some dental work as well.  Hopefully until then, she won't need anything surgically other than possibly ear tubes again.  So we don't have to see the surgeon or the genetics team again until next spring, yippee!!

Our one main concern is her speech. She has definitely made some progress since she started speech therapy in the fall. At that time she really didn't talk or sign at all, and didn't really try either. After 7 months of therapy, she does TRY to talk and has a huge amount of signs she uses. 

But she still has very limited speech sounds. She only uses 2 consonant sounds without prompting (m and g), a couple more she can do with prompting (b, h) and the rest she can't do at all. She speaks in mostly open mouth vowel sounds.  The surgeon says it seems like she basically hasn't yet learned how to use her new palate, even though it's been over a year since the surgery.  

Looking at the big picture, she really should be making more speech progress at this point, even with the cleft lip and palate. Although she is not yet officially diagnosed, there's a general consensus that she most likely has a speech disorder called apraxia.

There are a range of speech disorders, ranging from very minor (such as a child has trouble pronouncing a particular sound) to much more severe. From what I understand, apraxia is on the more serious side of speech disorders.  It's basically described as her brain knows what she wants to say, but it's not connecting that message with her mouth to say it.  It's not related to the cleft at all; she basically has some speech issues related to her cleft, and in addition to that, she probably also has a completely unrelated speech disorder that is isolated from the fact that she has a cleft.  They typically don't diagnose this until around age 3, so we have some time still before it's definite, but the signs are there.

Apraxia is treated with speech therapy, which she is already in. What this would mean, though, is that she'll most likely need more intense speech therapy long term, rather than a quick fix.  She'll probably qualify for an IEP (Individaulized Education Plan) and receive special services from our public preschool. She'll be eligible for that as early as her 3rd birthday this fall.

That brings us to big decisions we'll have to make regarding preschool for her. Our public preschool is wonderful (Allie goes there and we love it!) but it would require Mags to go 4 afternoons and be gone for 4 hours each time, with bus transportation.  That's a lot to ask of a very young 3 year old, so we'll have some big decisions ahead about whether or not we want to take that path right away, or choose a private preschool for this school year in which she could go just a couple mornings for a couple hours.  

The idea of her having apraxia scares me.  I know it's not a huge deal in the grand scheme of life, but I'm afraid of what her life could look like without having normal speech. Will she be able to make friends? Will she be able to communicate her needs, thoughts, dreams? Just tell me about her day?  Will she be able to read me a book when she gets older?  Some kids with apraxia never obtain normal speech.  However, from what we've been told, we're hopeful that she will attain normal speech, it'll just take her longer than the norm to get there.

So if you could pray with us that she starts to make more speech progress, and that we make the right decisions for her regarding school in the next few months, we would really appreciate it.

We're so thankful that otherwise she's doing so well.  Our fears we had a few months ago about her not even making an effort to sign or talk, or not being able to do some cognitive tasks such as identify pictures have completely gone away. It's clear now that she's super smart and understands what we're saying and what's asked of her.  (Whether or not she cooperates is another matter entirely... she is VERY TWO right now!)  I'm so thankful for that progress and am very hopeful that we'll see more huge gains in these next 6 months!

Can you name these tunes? She sings ALL THE TIME (although if she sees the camera on her, she stops singing to say "CHEESE!" so recording her from behind worked better). You can hear how she sings the tune without pronouncing consonants.  She basically doesn't use the roof of her mouth or teeth at all for speech.

Not sure why this one is sideways...

Such a 2 year old... she gets into EVERYTHING!  
Here I found her licking a rubber stamp. She also colored her white doggy with purple marker.

Truly 2 peas in a pod.

 She's so tiny! Her 24 months shorts kept falling down around her ankles. 
She kept coming up to me and signing "help".  Poor girl. :)

Some selfie fun at a doctor's appointment.
This girl is all about facial expressions.

Chatting on her phone while we waited at the hospital this morning.

1 comment:

  1. What a little sweetheart! So sorry you got more news to digest. We have a little guy who really struggles with speech and I understand your fears. It is hard to see our little ones struggle :(