Saturday, August 1, 2009

Just one example

One example of the crazy routine I have to follow for Benner.

Here is what feeding time looks like for Ben:
1. He should be bounced on a balance ball for about 5 minutes prior to feeding to help "turn on" his muscle tone.
2. He should be given some stimulation for his mouth and cheeks. I am supposed to use an electric toothbrush to vibrate along his cheeks and under his chin, and a little on his teeth and gums as well.
3. He should be given something cold. Before he is allowed to eat his true meal, he has to be fed at least a quarter cup of something very cold to help turn on his sensory perceptions. It's also helpful to use spoons that have been left in the freezer.
4. Because he is now restricted from eating solids that he can feed himself, I must give him a toy or something to occupy his hands to reduce his frustration of not feeding himself. (He is too jerky to self-feed the purees).
5. Now he is finally able to eat something - something that I have pre-cooked and hand-ground into a puree - and that does not contain any wheat, eggs, soy, or peanuts.
6. I'm supposed to carefully watch for any signs of aspiration... eye watering, runny nose... if there is any coughing I must stop feeding him that particular food completely for that session.
7. We must be certain that he remains upright now for at least 30 minutes so that he's less likely to experience any reflux.

I'm not complaining... but when Sarah was Ben's age, I could hand her a grilled cheese sandwich and a glass of milk.

Knowing what I know about kids like Ben, I'm mostly just thankful that he is able to eat at all, and that he's not hooked up to a feeding tube at this point. I will keep up with the wild routines as long as I have to. Sometimes when I think of all that's involved with Ben's daily routines, I want to hide my head in the sand... so I have to just take it minute by minute... and try to stay present... and try not to miss all the joy that comes along with all this craziness.

1 comment:

  1. Hi Kim!

    We keep a blog for Emily too to keep the grandparents in touch with what is going on. I know you are going through so much more than we are, so please know we are keeping in touch as best we can and care and love you tons! Anything we can do, we are happy to (even if it is a night off or an afternoon of swimming...just let us know). Let me know if you want to get together wether for a play date or a girl's only pedicure and glass of wine. :)