About Me

My photo
This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

Grab my button!


Friday, January 20, 2012

Baby Steps

Sorry it's been a while since I updated. My Dad passed away last week so things were kind of crazy for a little bit. It's a good thing that traveling doesn't disrupt John's schedule too much because he is so used to it. It was a bitter sweet time at home this trip. My Dad had been sick for 6 months and was miserable so it was a relief when he went but there is so much we will all miss about him. It was sweet seeing my son play with his cousins and I got some great pictures.

After talking to John's nutritionalist and John's little blip of weight loss she decided that we should try to increase his calorie intake. So we started mixing his bottles differently. When you mix his formula by the can directions it has 1 calorie per milliliter. We were instructed to start mixing it to 1.5 cal/mil. We also started the steroids on the 7th of this month as well as increased John's prevacid.
We had to cut back on the higher calorie bottles to only two a day because John's little body was having a hard time adjusting and it was causing him to throw up. We were doing really well on intake as well, John went up to averaging about 23 ounces a day. He even took over 30 one day!!! The steroids seemed to be working, his symptoms were calming down and the prevacid seemed to be helping tone down the random reflux episodes at night. He even gained back the weight he lost, plus a little. So as of January 11 John weighed 17.3 lbs.
Once he and Doug met me in Memphis however things started to change. John started gagging and throwing up again. So we cut out the higher calorie bottles. He is still eating very well, averaging 23-25 oz a day.
Doug ended up taking him to meet the occupational therapist so what I got from him is that John is doing well in his development but he does have 'severe feeding impairments due to Eosinophilic Esophagitis'.  How do you teach a kid to eat foods he cant have? He will have to have therapy to correct this issue as soon as we can find some acceptable foods for him to learn to eat. We had to move our allergy appointment back to the 25th  from the 18th. They should be able to tell us if there are any foods that are safe to try. Then we can start the food trials. I will go into food trials later, thats a whole other blog.
I feel like every time one of his Doctors changes something he gets better for a while and then drops off again. Even though it feels like we aren't going anywhere we are making slow progress!
Only one more full day of steroids then our goals are 24 oz a day with at least 8 of them being 1.5 cal/mil, seeing the allergist, and finding at least one fruit, one vegetable, and one finger food that John can eat.
I think we've dodged the feeding tube for now, as long as John keeps taking in this much formula and can continue to increase we should be okay. We will be tracking John's head circumference along with his weight now to make sure he is growing properly.
While we were in Memphis John started walking while only holding one hand which is a big step in the right direction! He's only a couple of months behind on these developmental milestones.
We see the nutritionalist next week for a weigh in so I will update then!

No comments:

Post a Comment