Continue to pray

Some updates on Connor's health....

Age: 9/6 months
Wt: 14lbs 8.5oz
Length: 25.5"


Things have been like a roller coaster, one minute things are going well and then all a sudden there is a change. Not sure why we would expect anything different, Connor has lived his entire life with this motto! ;)


He has continued to gain a small amount of weight one week and then loose a significant amount the next. Our pediatrician or GI Dr can not figure out why, all of his labs are normal and he is getting all of his formula through his g-button. Connor continues to refuse all formula and will only take a few bites of baby food per day. Last Friday we changed his formula once again.He is still getting the soy formula but now is getting microlipids added to it for higher calories. His doctors didn't feel comfortable increasing his calories any higher than he already was on his formula. The microlipids are basically a fat emulsion that is added to help put on weight. He gets 3 4oz feeds during the day and from 9pm-6am he gets a slow continuous feed. Hopefully that will help decrease his reflux issues and help him gain weight. I am curious to see what his weight is this week.

Playing with his sweet peas:

Monday morning Connor had to have a pH probe study, thankfully we were able to do this outpatient. The GI doctor wanted to get an idea of how severe his reflux truly is. He mentioned a Nissen the last time we were at his office but wanted to see results from the pH study first. Connor was going to get a Nissen when he had the gtube but didn't because he ended up having a MRI and gtube done at the same time. I am open to the nissen if it is absolutely necessary but I want to try all nonsurgical things first. We should get results from the pH probe next week.

At home with the pH probe:
We are in the process of going through the referral process to Marcus Center in Atlanta, GA. Marcus is an autism center but also has the leading feeding program in the southeast. I have heard some amazing results from there. I am hoping they are our answer to help to get Connor to eat again. We will have to travel to Atlanta for an evaluation first before they determine if Connor can receive therapy there. The other thing we are waiting on is for my insurance's approval to cover this, we had to send a letter stating why Connor has to go there. I pray they will help cover some of this because I can't imagine how much this will cost out of pocket!