Today is a brand new day. A day to start a new way of doing things. It's push time. Starting today, we are pushing the oral feeds, hard. So far today, she's had mashed banana, applesauce, mashed potato salad, yogurt, ice cream, and the latest, greatest, freeze dried strawberries and bananas. I have Andi holding the piece of fruit and feeding herself, or just handling the food. It's a start. An experience. After awhile, I will top off her "feed" with 2 syringes of blenderized food pushed through the g-tube. I am hoping to quickly increase her oral intake and decrease her g-tube dependency. I figure if I can push on the signs and verbalization, I should really start pushing on the other two areas she needs to focus: oral feeds and walking independently. So, between the feeds, the gait trainer, and the exercise ball, we should whip this little bean into shape a bit quicker.
Normally, Andi would get three syringes of blenderized diet via g-tube. One syringe is 60 ml. So, 180 ml, which based on the b.d. calculations, she's getting a little more than 180 calories per 180 ml of food. She probably won't initially take 60 calories by mouth at first, but, as she strengthens both her swallow, timing and desire - I think, no, I know she will take off.
The tough thing about CHARGE Syndrome, is that it isn't just one battle. It would be one thing if she only had to deal with hearing issues. With CHARGE, it's a multitude of obstacles to overcome. Andi's hearing, feeding, and balance issues are keeping "development delay" an everyday obstacle we work to overcome.
I was watching her sleep this past week, because honestly, she's been sleeping next to me at night lately. She seriously breathes like she's running a marathon. I wonder if a breathe right strip would help. I don't see her allowing it to stay on, but, I'm trying to think of things that the Dr's don't - which, sorry - is a lot.
Hopefully, the impending surgery will alleviate the work her body does when it's supposed to be resting! Still waiting on that verdict, and timeline.
In the meantime, she EATS! It's a brand new day.
Can you put the breathe right strip on once she's asleep, or is she a light sleeper? Good luck on the oral feeding--I'm sure she will be a pro at it soon--like all of us adults who eat too much! :) <3ReplyDelete