The Peanut Gallery

Saturday, September 19, 2009

A Girls Worst Enemy....The Scale!

Saturday, September 19, 2009
Kennedy is just like every other girl out there - she dreads the scale!! So, we have been battling the dreaded scale. Kennedy is having a lot of weight issues - in particular gaining weight (to bad Mommy didn't have this problem)! So, I initially attributed her lack of weight gain to her 5 week long hospital stay back in May, however, as of today, she weights less then she did 3 1/2 months ago. Her current weight is 16lbs 1oz - that of an average 4 - 6 month old. It is times like these that I doubt my decision to stop looking for a diagnosis for Kennedy. But then again, I come to the same realization - that even with a diagnosis there is no guarantee that anyone would even know or could explain what is going on with Kennedy.

We have seen Dr. Yanni (GI) more then both parties would like to see one another. Kennedy is having a lot of problems keeping her formula down. We have had to drastically change Kennedy's feeding regime. Currently we are feeding Kennedy continuously for 17 hours. From 5pm to 10pm she eats 50ml/hr. Then we lower the rate for her 10pm to 10am feeding to 40ml/hr. All-in-all she gets 730ml/day which is a little more then 24 ounces in a 24 hour period. Just a quick flash back - in May Kennedy was able to tolerate all of her feeding via bolus. She could tolerate 120ml/hr. This is one of the hardest things for her doctors to wrap there heads around. In the blink of an eye she has gone from eating from a bottle to not, from sucking a pacifier to not, from moving her limbs to moving nothing, from tolerating her feedings to not tolerating them at all. It is completely baffling if you ask me. It really makes it hard to get a routine going when her norms seem to be continuously changing.

We have had to switch Kennedy over to prescription formula. We are currently using Elecare, however, it does not seem to be working! Kennedy is still throwing up several times as day. However, the most bizarre part of it all is if I feed her pedialyte only she is perfect. She is able to handle the liquid and won't even as much a spit up - go figure. There are days when I wish I could just feed her Pedialyte all the time. I will give Kennedy a couple more days on this formula before I call Dr. Yanni and see what he wants to do. We have discussed a GJ tube and Nissen, however, he does not think she is a good candidate for a Nissen procedure. So now we wait and see. We have become experts at the waiting game.

2 comments:

Mike said...
This comment has been removed by the author.
Mike said...

You don't know me, but my work (burke Williams) and I have been following your story for months. Not a day goes by that I haven't been asked how your little girl and family are doing. I just want to recognize that where so many would have given up you seem to have risen up against the daily struggles and found so much beauty in every moment you are given with Kennedy. You are an inspiration to so many. Know that a group of people rooting you on, and drawing inspiration from you.
-coco (mike's daughter)