This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Thursday, June 3, 2010

More Meds

Today has already been a long day for me.  I'm a bit worn out, but I'm not used to being up at 5:30am anymore.  Just a small sacrifice to make for the health of my little man. :-)  We needed to be in Rochester by 7:45am for Saxon's GI consult and appointment with the dietician.  We saw Dr El-Yusseff and his intern Rachel.   He is a gastroenterologist.  They didn't see anything wrong with his tummy.  Dr E is worried that Saxon may have fibrosis of the colon, but said it is not likely.  He considered doing an x-ray of Saxon's colon, but decided to do the conservative approach and put Saxon on Mirlax and Ex-lax to see if we can get his bm's a little more regular and so they're not so firm.  Yes, one of the many joys of being a CF mom involves analyzing your child's bm's to see if his diet or medications need to be adjusted.  Hahaha.  This should make for some INTERESTING diapers in the next few days!!!!

After seeing Dr E, we met with the dietician.  One of the things she told us I already kinda knew - we need to stop babying Sax with his food - if he's not going to eat what he's given, too damn bad!!  We need to figure out how to up his calories still though.  One thing that has changed is that we are giving him Carnation Instant Breakfast Chocolate twice a day with his whole milk.  We are also supposed to be starting to add some cream/half and half to his milk.  She also gave us a book with tips and ideas of how to increase the calories in his foods.  Some of the things they want us to add are interesting - like adding eggs to tuna salad and powdered gelatin mix to cereal and topping with cream.  I feel bloated just THINKING about some of the foods he's going to be eating and that we're encouraging him to eat!!  I actually DID add melted butter to his applesauce today - it was kinda weird, and I think he is trying to adjust to it... 

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