As most of you know, I receive 100% of my nutrition through my Gtube that feeds directly into my stomach. Many of us kiddos with CHARGE have a lot of difficulties with swallowing, oral sensitivity, etc. So it is a constant battle for us to overcome these problems. With the help of our parents, super therapists and LOTS and LOTS of work, some CHARGErs do get their feeding tubes removed within 3-5 years or so. Others much longer and others even longer. We are *hoping* that I am in the short term category, but with my medical history we may be keeping it for slightly longer. Who knows!?! In the meantime, we are trying, trying, trying to make progress...but man, it is very slow! And Mom gets a little sad about it sometimes. She keeps telling me how wonderful it will be to share meals and special treats together someday...sounds fun!
So we keep trying...even when it seems like nothing is working. Some days I will let Mom give me food (for tastes) and swallowing attempts, and other days I want nothing to do with it at all. We are getting a bit anxious about this issue and want to move forward more aggressively.
So to make sure we were safe for increasing our oral attempts, we scheduled this swallow study. This is my second study. The first one I did "ok" but aspirated some with the pureed barium/baby food.
This time I did much better with the pureed foods. I only aspirated once and that is when my neck was positioned a different way. My swallow is still "uncoordinated," which means I take my time swallowing and it requires more effort.
I immediately failed the liquid test but that's ok. Once I get the hang of pureed, we will start working on liquid. And quite honestly, we have a way to go to reach that level!
So all in all, the results were fairly positive. We have been given the "go ahead" with doing more oral attempts, but Mom is supposed to monitor my respiratory status very, very closely. This will help us know if I am aspirating or not.
Last night we went and bought all kinds of pudding, yogurt and applesauce. Mom was so excited to buy something other than baby food for me! These consistencies are actually supposed to be better for me because they are slightly thicker. However our first attempt today was not good. I wanted absolutely nothing to do with the applesauce. Oh well...there is always tomorrow! :)
Here I am during my test! I liked spitting a lot of the barium back out at Mommy!!! I kept giving raspberries in the middle of the test. :)
Here's the machine, crazy huh?
4 comments:
oh maxwell,
I am so glad that mommy is there and so are the dr.'s to help you see the bigger picture...keep trying little one and never give up..
Maxwell,
Loved the pictures of you in the chair!
Glad to hear that you're making progress! Moving forward is good! Cameron had three swallow studies before he was cleared for everything. Just keep trying. And seriously, if you need Cameron to come up for support, just ask! :>)
Rebecca
Cameron and Nathan's mom
Poor little fella ... looks like he was taking it like a trooper, though! Having been through the same thing for a paralyzed vocal chord, I can vouch for how nasty that barium is, no matter what you try to disguise it with! Hang in there you two. Hope all the other testing went well and that the doctors realize what a miracle Max is and what an awesome job you're doing Amy as a coach/therapist/doctor/nurse/mommy.
That is the most adorable pic I have ever seen! Can't say I blame Mighty Max for spitting that stuff out! It can't taste all that great! :)
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