WOW! WOW! WOW! This is big, big, big...ok HUGE... news. Ready?I AM LEARNING TO EAT! Seriously! I am! I am! Guess how much I ate today???
Well to give you a better perspective, let me provide a little background. Most of us CHARGErs have difficulty swallowing, especially if we have the nerve defects (facial palsy, hearing loss, etc.). Up until about a month ago, I wouldn't eat more than a few spoonfuls in an entire day. Then we got me up to about two ounces a day (a little less than a jar of a baby food).
But these past two weeks, I have made TREMENDOUS progress!
Today was my really big day...NINE OUNCES! Yes, you read that right...NINE OUNCES! I had about three at each meal.
Mom has been sitting me down religiously for breakfast, lunch and dinner to get me in the routine. We started a "food diary" to monitor my intake...and that seems to help too. She also talked with my nutritionist in Seattle and we are going to try to cut back on some tube feeding to see if that further encourages my desire to eat. So basically Mom has to "starve" me a bit and show me what hunger is. But at the same time, we need to watch my weight very closely because my tube feedings are VERY high in calories and we don't want to take too much away. (Plus I lost a pound this past week from that yucky stomach bug...and that's a lot of weight for a lil' guy to lose!)
All of this is so exciting. Mom keeps asking everyone, "guess how much Maxwell ate today...c'mon guess!" And of course no one shows quite the level of enthusiasm that she wants. I think she expects the high school band to start playing or something! :)
But seriously folks...this is huge. I am actually opening my mouth, closing my mouth and then swallowing! Might seem simple to you, but trust me, it's not. It requires a lot of coordination to accept the texture and flavor and then move that food properly.
The fun part is that I get songs, happy dances, and clapping for just about every bite. That mommy sure is crazy about me! Or is she just crazy??? :)
YAY FOR ME! YAY FOR ME! YAY FOR ME! :)
Oh and if you weren't already impressed, guess what my diet consisted of today? Fruit, veggies and prunes (all pureed baby food of course)! That's a lot of variety and tastes for me! Usually I am just a banana mix kind of guy. :) The variety is a big accomplishment too. Wonder what I will eat tomorrow???
12 comments:
Way to go Max...keep up the eating...although, I am not real sure I would be thrilled to eat prunes, but that is just me :-)
WOW! WOW! WOW! Max, you are truly awesome. I'm so excited for you and also for Mommy who is seeing your hard work pay off! What a great and rewarding Christmas present.
Just one question....prunes? Ick. But hey, if you're eating them Mr. Max, I'll buy you a big box. An really, really big box of prunes.
Love you.
Kristy
OMG!!!! YAHOOOOOOOOOOOOO!!!!!!!!!!
I am screaming!!!! I am sooooooooooooooo happy for you Max and Amy..I know how huge this is for you...HUGE!!!!!!!!!!!!!!!!!
I've got goosebumps...
Love you both so much..
screaming down south
OH THAT IS AWSOME MAX!!
That is what we had to do with Eva cut back on the tube feeding to get more intake by mouth.
Also our GI gave us some high calorie recipes you can blend to be like baby food and it has many many tastes!! If you want I can email them to you.
Keep up the great work Max!!
Hugs,
Crystal and Eva
Yipeee to Max and to your "feeding therapist". I know how hard it is to keep focused on the eating. Keep going! I can't wait for you to join the "No longer on the feeding tube" club with Cameron!
Love,
Rebecca
Mom to Cameron and Nathan
Way to go, Max!! We are so proud of you!
Leslie and Katie
I am with the others, screaming and screaming and screaming for joy that you are now eating. Way to go Maxwell, way to go. Way to go Maxwell, way to go. Oh, such wonderful, amazing news.
Love,
Diane and Alex in WV
and im eating blueberries mangos and cherries
Max--you are such a big guy now. I just went back to look at some pictures of you when you came home last year, and then I visit your new blog and see a picture of you sitting with your sleeves rolled up and food all over your face. That progress is just HUGE. Hopefully I'm going to make some similar strides. Mommy and daddy got the go ahead to start back on solid foods again (my Dr. doesn't think I have food allergies).
Hugs,
Evan
Before you know it, we'll have to sign you up for Cookie of the Month club Mr. Max! :)
way to go!!
Jaye
Way to go Max!! I bet your Mommy could not ask for a better Christmas present from you-you are eating and healthy at home. WAY TO GO!!
I love that face. Lets see, what will you be eating next? Max, keep up the good work. We are all sooooo proud of you. (and mommy too)
Post a Comment