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Friday, July 26, 2013

Frazier Water Protocol Update: I love this program!

July has been such a busy month!
I knew it would be. Between July and the beginning of August we have two birthdays and two kids going back to school. And one of those kids is Christian!
But before he starts Kindergarten, he has a birthday coming up. I'll let you all in on his birthday trip we're heading out for tomorrow in a later post. For now, I wanted to update on the Frazier Water Protocol we started with him about six weeks ago.
I love this program!
About three times a day I clean his mouth with a toothbrush. Teeth, inside of cheeks, roof of mouth, tongue, and lips. Then I follow it up with about 3mL of water by mouth with a tiny syringe. The whole thing is supposed to promote better oral hygiene and stronger swallowing, thus reducing the risk for aspiration and/or pneumonia.
And it does!
Christian's mouth was starting to become a problem. I felt like brushing his teeth alone was not helping and with him being a mouth breather with his mouth constantly open, his mouth would dry up. Saliva would actually dry over his teeth and it was like I needed a power washer to get it off! I was beginning to wonder if this was going to be a problem because what I was doing didn't seem to be helping.
Enter Frazier Water Protocol.
There was a difference in his mouth within the first few days.
This is what his mouth looked like before. A mess.
Pretty, right?
Very dry and you can hardly see his teeth. This was what it looked like every morning.
This is after we started the program.
He has teeth!
Over the years Christian's gums started to engulf his teeth. The roof of his mouth is different than children his age and his teeth kind of sit in his gums. When his first top teeth came in, he had a big gap between them. The gap disappeared when his gums enlarged. This, I'm assuming, is because he doesn't eat by mouth and because his mouth is always open so every thing dries over.
But after six weeks of the water program, look who's back!

It's the gap!
His mouth looks so much better! But I have to do the water program AT LEAST three times a day. If I do it less, which has happened because he'll fall asleep early or something, I can see the difference.
Not only has the program vastly improved his oral health, but his swallow is so much faster! He used to pool all of the liquid at the back of his throat and give one big swallow. But now he will swallow right away. And fast. He has also shown more interest in tasting food and he is clearly more motivated with food. His favorite is a chocolate peanut butter smoothie because, of course, it is.
Here he is in action with his water:
If he swallows better, his risk of aspiration is lower. He has never aspirated before that we know of but as his anatomy grows and changes, it's always a possibility. So we're working on strengthening that swallow reflex as he grows.
I have our fabulous speech therapist, Randi, to thank for suggesting this program. It has been amazing!
Monday, July 8, 2013

Four years later.

I'm sitting at the table with Christian by my side like we've done every day this summer. I drink my coffee and he drinks his water and a little bit of breakfast smoothie. He grunts at me when he's ready for more. He likes his food. And I like my coffee.

This morning with Momma's coffee and our chocolate banana smoothie, chosen by Christian with a "clear yes," is so normal and average. So beautifully normal and average.

This morning is a little different, though. Four years ago today Christian survived. Our little eleven month old boy left our house and this world and sent back a new boy in his place. I look back on that time and wonder how I even survived it. He was full of tubes and scars. He didn't even seem to know who I was. In fact, I remember thinking that exact thought - He doesn't even know who I am.

But over the years the hard became a little less hard and even passed as easy. The sad subsided and the joy arose. Now I don't cry for what we have lost, what Christian has lost. I cry for all we have gained. I cry for that scared, pregnant mom spending the night in a frigid hospital wishing and praying to wake up from a nightmare. I wish I could tell her it will be okay. He will know you again. He will smile again. Just hold on tight.

He is such a gift. I can't even begin to articulate my feelings about this. There is a clarity that comes with living on gifted time. It's almost like a secret to life that is so excruciatingly beautiful but you don't get to experience it without feeling immense pain and heartache. It's a trade off.

If I could talk to the me four years ago I would tell her to hold her baby. Really hold him for the baby that he is. I remember reading advice about parenting children with special needs and one thing that always stuck out was the advice to enjoy my child. At the time I thought - Enjoy my child?! Enjoy what?! His constant crying? His laying there doing nothing? How do I enjoy this?!

Now I look back at these pictures of his babyhood and just look at him. I want to hold that little baby with his purple trache speaking valve right now!

Over the last four years Christian wasn't the only one who had to learn new things.

I had to learn, too. I had to learn that his "doing things" would look very different than any other child, ever. And I needed to learn how to recognize that, rejoice in it, and speak his language so I could celebrate him for the boy that he is. I would have told the me four years ago not to get hung up on fixing him, but to focus on making him happy. I would have told the me four years ago, but the me four years ago wouldn't have listened then. I wanted to fix him.

But I learned. He learned to breath and to sleep and to make sounds. I learned to accept him for the perfect baby that he is.

I learned to trust my instincts and that he is still my son and I am still his mother. I don't need permission to give him Teddy Grahams in his blend. I don't need permission to rough house with him. No medical professional has ever said anything to me about my choice but other parents have questioned me. Did someone tell you this was alright? How did you know you could give that to him? Because I'm his mother. And I say it's okay.

I learned that my son isn't forever a medical patient and he certainly isn't a medical patient in this house. He's a kid. His medical stuff is just the way he is parented. I give Lola Cheerios with honey for breakfast. I give Christian a blend through his tube. It's parenting, not a medical procedure. He doesn't need a doctor or a nurse for that. Same parenting, different look.

Christian has been our greatest teacher. When we went through the hardest parts, with his non-stop crying for hours, I would wonder to God - Why did you spare him? To torture him? Will he ever be happy?

I think I know why Christian made it. He teaches us every day. He teaches us about this big, great love that's painful and stunning all at once. He teaches us patience and acceptance and he humbles us. He teaches us forgiveness. He teaches us strength and the will to not only survive but to thrive. He teaches us to appreciate everything and take nothing for granted. Even a little half smile.

He teaches about choosing happiness. He teaches us about not feeling sorry for ourselves. He teaches us perseverance. Because if Christian can be content in living his life every day the way it is, certainly I can, too.

I love that boy for everything he is. I don't think about the future as much as I probably should. But I think about now and what we're doing today. Finally registering him for kindergarten. His fifth birthday coming up. I'm focusing on now.

Christian is still showing us miracles all the time. Just when we think he's done, he throws us another one.

But my greatest joy four years later? Christian likes dinosaurs and Thomas. He likes chocolate peanut butter smoothies. He knows his family. He knows his Momma.

And, I finally believe that Christian is happy.

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