Wednesday, June 22, 2016

Maggie News

When Maggie came home to us in 2013, she had major surgery a few months after she got home. They repaired her lip which had split back open after its repair in China, rotated her gum line around (and saved that crazy tooth!), closed her palate, worked on her nose and put in ear tubes.

Since then, her doctors have said to just give her lots of time to see how her speech develops. We realized pretty quickly, though, that her speech issues went beyond just typical cleft-related delays.  Part of her speech delay is due to the fact that her mouth is just not shaped in a way that allows certain sounds to come out easily, which is cleft related. But her delay is much more than that and for a long time we have suspected that she has apraxia of speech.  She's been in speech therapy for nearly 2 years now, and while she has come a long way (she used to only grunt and now she does try to speak in short sentences), she is very far behind where a typical almost-4-year-old should be.  

She understands EVERYTHING and has lots of stories and thoughts to share as all preschoolers do. But when we don't know the context of what she's saying to give us clues, we really struggle to understand her. Since I'm with her the most, I'm somewhat fluent in "Maggie speak", but I'm still at a loss much of the time. People who don't know her well can't understand most of what she says.  She still struggles to produce even the most basic of sounds. Thankfully, her /b/s and /m/s are more succcessful now, but very common letter sounds such as /d/, /t/, and /s/ do not come out clearly at all.  She just cannot do it.

We've also noticed that the sounds she does make sound very nasally, which can be an issue for kiddos with a cleft.   A couple months ago, we visited the VPI clinic at Children's Hospital.  This appointment took HOURS and she was seen by ENT, speech and a geneticist.  She also had a scope put up her nose to view how the back of her throat is functioning (while she was awake-it was UGLY).  We learned a lot about our little lady.

1.  She was officially diagnosed with apraxia of speech, which is a speech disorder that makes speech very difficult.  It is separate from her cleft- she just happens to have a cleft and an unrelated speech disorder.  It's a double-whammy, making speech really hard.   What this mean is that her speech development is going to be a long marathon with years of intense speech therapy.  It takes her MUCH longer than a typical kid to master a speech sound. For example, most babies babble the /m/ and /b/ sounds before they're a year old. She has never babbled and it took about 18 months of speech therapy for her to be able to use those sounds somewhat naturally in her speech. 

2.  She has Velopharyngeal Insufficiency (VPI), which means the back of her throat is not functioning properly when she speaks and is allowing air to escape out the nose during speech rather than out the mouth. I've read that this happens in about 30% of kids with a cleft. It is not related to her apraxia. This means she needs surgery to try to correct this hyper-nasality. SIGH.  It's not a condition that will correct itself, and while it's not an emergency, the sooner the better. While it's not a guarantee, they're hopeful that this surgery will revise her palate in such a way that sound will come out of her mouth rather than her nose.  While it won't "cure" her speech issues, it may also make it a little easier for her mouth to make certain sounds.  There's also a chance that it won't help at all, but we feel that we have to give it a try.

So, she needs surgery sooner rather than later.  She'll have a couple weeks of restricted activity and will be on a soft-foods diet for about a month.  Her surgeon was already booking in September, so that wouldn't give her time to recover before we leave for China. Thankfully, they have offered us a day in July for her surgery, but we'll be an "add-on" whenever they can fit her in. She'll potentially have a long day without food and lots of waiting, but we're hoping it'll be worth it to get the surgery done in July and give her plenty of time to recover before we leave for China in September.

As of right now, her surgery is set for July 22. I'm definitely very nervous about it. Her palate will be very fragile as it heals, and she has a nervous habit of sticking her fingers (and objects!) in her mouth all the time.  She also loves to eat and will not be happy about not being able to use a utensil, straw or have anything hard.  I'm also nervous about her recovery being smack in the middle of summer while I have 3 other kids at home to care for, but it's better than having 4 other kids to care for once Joey is home!  

This definitely adds another layer of craziness to summer, travel prep, Joey prep, etc. but we're so hopeful that this is the right thing for our girl!! 

With her best friend, who also happens to be her brother.

1 comment:

  1. Wow, what a big thing for you all to be facing right now! Nathan and Matthew have both had that scope done and it is really awful :( I'm so glad you got some answers and will be praying for this surgery to go well!