08 August 2010

Update: The Vest and Other Things

We haven't yet heard back on Bennett's bloodwork and stool tests but hope to do so on Monday. 

Bennett continues to thrive.  We are still dealing with vomiting but we're hoping we will be able to resolve the vomiing issue when we have more information and the results of his tests.  There is a chance that the concentration of his formula is causing this vomiting.  But to put him on 18 calorie formula for good seems quite distressing to us.  There are just too many calories that he needs to consume in a day for us to have him on 18 calories per ounce (he'd have to be hooked up to the feeding pump practically all day!).  But we will talk with his doctor about it next week.  For now, the vomiting isn't *every* feed and sometimes not even every day.  So, we can handle it.

One other issue that we have been noticing is Bennett's lack of affect.  He is a happy baby but most of the day, he really is more of a "content" baby.  He doesn't necessarily smile unless smiled at.  He doesn't necessarily engage unless he's being engaged....and even then, sometimes he doesn't even respond.  It's not an autism-like issue.  It's very obvious that he's aware,  focused and wanting to connect with others.  But he just doesn't seem to smile or laugh as much as one would expect from a chubby little baby like him.  The doctor said he believes that Bennett probably just doesn't feel good most of the day.  The doctor reminded us that Bennett could be feeling nausea, pain or just a "yucky" feeling much of the time and we wouldn't necessarily know.  It's likely attributed to his GI issues but directly related to his Cystic Fibrosis.  Knowing this really helps us remember that while Bennnett looks very healthy and does have the most endearing smile, his body is really sick and he likely carries around his sickness in ways we don't even fully understand.

As far as the Vest goes, Bennett is rocking!  We were officially trained yesterday on how to use the Vest and find that it is very easy!   Bennett seems to be handling it wonderfully, which is such a relief!  We had been warned that young children or children with GI issues (children like Bennett) don't tolerate it well.  But this does not seem to be the case with Bennett.  We are most excited because this allows us to do his therapy well and do it right.  At this point, we still have to hold him and really engage him during the entire 20 minutes twice per day (which is exhausting).  But, it is so much easier than having to clap his back for 20 minutes by hand with the percussor.  Bennett will continue to get his Vest therapy for 20 minutes 2Xs per day for the rest of his life.  We hope this will keep him out of the hospital and keep him well!  We are so thankful for technology that will keep our boy well!

1 comment :

  1. Wow, I don't think I realized that you were doing chest therapy for 20 minutes at a time. Goodness. I'd never advocate it, but popping on a movie kept Molly content for a while the other day when she was sick (and so I guess I did advocate it ;)


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