Ok I just posted about the "not so fun" stuff, but I also want to brag about Max's latest "up" on our eating roller coaster. Through the past year, he has had more ups and downs, twists and turns than any ride in any amusement park for sure!
So what's the good news about Max? Well, he is eating again! Each "feeding" takes a lot of time...but he is swallowing (slowly but surely)! This is HUGE for us. We were here almost a year ago, but then he got sick and completely stopped. I am trying to not get TOO excited because it is very possible this is a temporary "up," but I sure am going to do my best to enjoy this time and hopefully keep it going! And he is doing all of this while not feeling well...that's even more impressive! (We are probably heading back to the doctors today because his bug has not improved with antibiotics. He has been requiring more inhalers and oxygen...and he just LOVES to share his germs and coughs right in my face.)
He even tried some pumpkin filling last night...and sorry to be graphic, but it was evident in his diaper this morning! I cannot tell you how exciting it is to know that he ate enough of something to have that "change." Thrilling...seriously!
To understand the difficulty that our children face regarding eating...here is a perfect example: This week, a friend of mine was very excited that her nine year old son (who also has CHARGE Syndrome) was attempting to eat solid foods, i.e. crackers, etc. We were all thrilled for their family! This was a MAJOR first. Then a few days later this kiddo ended up in the hospital with food stuck in his esophagus. What a crazy journey we are all on together! (Alex is doing better fortunately...but what a scare.)
Wonder what new pureed foods Max can try today?
(Oh and yes, he is still being tube fed too. I just cut back the formula depending on how much he is eating that day.)
6 comments:
Yeah Max!
Love Jenn
Keep up the great work Max. I hope you continue on this wonderful journey. It was thanks to you that I learned Eva also loves peanut butter.
Hugs,
Crystal and Eva
Hip Hip Hooray for Max !! Amy you are doing an awesome job. You and Max are a team, and we are the cheerleaders.
Love,
Carolyn in WV
Go Mr. Max! I'm so happy to hear about his swallowing.
So it was a piece of (cooked) baby carrot that Alex had stuck in his esophagus. Proof that I was feeding him heathly foods LOL. These kids are never boring, that's for sure. You can see a picture of the carrot on my blog, the surgeons know how much I love pictures ;) http://moriahbettencourt.typepad.com
yayyayayayaya
Way to go, Max! Keep up the good work.
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