Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, April 06, 2009

Lets expand on this a bit....

Sorry, I couldn't think of a clever title. LOL 

Angela got her palate expander on today. 

Tomorrow I want to take it off.

Ok, I won't REALLY, but it's going to be a really long couple of months! First, I cannot understand ANYTHING she's saying. Hopefully that will improve as she gets used to the feeling of it on the roof of her mouth. Secondly, she can't EAT with the thing on! O...M...G! Dinner was H.O.R.R.I.B.L.E!!!!! When she wasn't gagging, she was crying in frustration. When she wasn't crying in frustration she was trying to take a drink to was the food down, which would lead to an aspiration episode. 

PLEASE PLEASE PLEASE tell me this will get better after a few days??? Her swallow has never been stable, and I think this straw just broke the camel's back! Also, she's tongue thrusting so bad (something I thought she'd long grown out of) that she can't move food to the back of her mouth at all! 

Oh, and did I mention the drooling? And the SPITTING???? She's not spitting on purpose though. Instead, when she tries to swallow the spit, her tongue thrust is so strong that the spit comes SHOOTHING out of her mouth instead, and she looks at me like, "How did THAT happen??? I swear I didn't do it!" 

And of course, there is the cranking on the thing. They showed me how to do it, and I do it every night until they tell me to stop. We go back for a visit in one week so they can check to make sure everything is moving the way it's supposed to.

Angela has asked me about 75 times tonight to "Please mom. Please take it off." And when I remind her it's CEMENTED on she cries in a very panicked way. 

For those who are reading this because you've found it in a google search about palate expanders, and you're looking because your kid is going to get one, please know I don't think Angela's reaction is typical. First of all, she has Down syndrome, so she doesn't understand everything that I tell her when I'm trying to explain WHY she's gagging when she eats. "Angela, if you put the food in the middle of your mouth like can't chew it and it gets stuck. But, if you put it between your teeth like this....then you can chew and swallow." Yeah, she's not getting that. I think mostly because she's in the middle of a panic attack when I explain it.

 I have the feeling she's going to be living off Ensure for the next several weeks! I know there is no way I can expect them to deal with this at school, at least not the way she was tonight, so I'll be sending Ensure along with her. So, tomorrow is day 2, we'll see how it goes. Please say a prayer for her tonight that tomorrow is a better day!


Michelle said...

My daughter had one, and she did adjust. Granted she doesn't have the other issues that Angela has, but there is hope, I swear. :-)
I will say turning that thing, I did nail the inside of her mouth twice during the months that she had it, and that broke my heart, and hurt her, but in the end she has beautiful smile now. Hang in there.

Michelle Tash/Pando

Monica said...

Oh poor Angela!! We will say some prayers!!

Your making me nervous though our Ortho. appt. is in 2 weeks!!!! Maybe I should cancel :) (just kidding, I think)

TUC said...

Ooo, I got that claustrophobia feeling just reading about what Angela is going through. You must just feel like crying.

I am going to pray for her right now! Lord God, I pray that Angela gets used to the feeling of her palate expander and can figure out a way to manage her food. Thank you for your kindness toward her. Amen.

Tamara said...

I have to tell you that your twitter that she couldn't talk yesterday freaked me out. I thought it had something to do with the seizures rather than a palate expander, and I was seriously upset until I scrolled down a read your previous tweet.

That said, this sounds awful. Lots of prayers. I'm sure you'll have it figured out in no time 'cause you're just that kind of woman! :-)