The Biggest Loser

Caed has consistently been gaining 1/2 lb. every week for the past month. Weight gain is always a plus in short gut world.....but 2 lbs. in 1 month?.....I was afraid if we kept this up, Caed might wind up on his favorite tv show.

We have been in contact with NE, and they aren't too sure this is a "good thing." Well, good in that he is gaining (intestines absorbing). But, concerned in that it's too much - too soon. They sent us a new formula (recipe) in which the k/cals are reduced. We will try that a few weeks and see if there is a change.

Caed's labs this month were good, except he was a little on the dry side. Caed drinks his ORS SO WELL (almost 2 liters/day)!! So, it couldn't be that. However, his stools are straight liquid again, so we are assuming it's coming from that. They also are more concerned with this, so they might switch his formula entirely to EleCare (which many of our gut friends are on). Junior NeoCate can be hard on the gut (or hard to absorb) with some kids. So, it looks like we'll be experimenting several things this month.


This morning, Todd drove to Houston to meet our NZ friend, Hamish, to take him to the Dallas/Texan football game. Many of you have followed Aria's story....and know what an amazing little girl she is! She didn't have 1, but 2 multi-organ transplants, and by God's grace is doing SO well. We are thrilled that Hamish is getting to take this once in a lifetime trip down to Houston. This is his dream....to see them on their home field. We want to thank our parents, Carol and Cordell, Tina and Bridgette, and Kendall for helping us do this for Hamish. I'm certain it will be one of the highlights for him of their time here in the US.

(Go Cowboys!!!) ;)

And the rehab continues...

We have officially weaned Caed off the formula he has been on these past 2 years. The infant version is broken down and much easier for sbs patients to absorb. However, at our last NE visit, the only concern the docs had was the lack of weight gain. So, after a couple of months weaning....we are now 100% on the Jr. version. The kcal increase has been evident. Caed has gained a whole pound in the last 2 weeks. The only problem we are seeing is his output. His stools are straight liquid again (3x/daily). NE said this is common and sometime when there is a change in formula, it can take awhile for the body to adjust. (or he has some bacterial overgrowth again.) I'm really leaning on the formula being the issue. His labs continue to look good, so we are grateful for that.

It was just a reminder to me that we continue to travel this LONG road of intestinal rehab. Todd and I have had our sights set on Jan (our next NE visit) for the possibility of his tube being removed. Right now, I'm not so sure. (which is ok) Caed continues to do SO WELL!!! It'll happen when it's supposed to. It's hard to see Caed outwardly and not expect that same "normalcy" on the inside. When the doctors first told us 2 1/2 years ago that this was just going to take lots of TIME.....I never in my wildest dreams thought it would be this long! (...and it's still not over). Caed has a chronic condition. It will never go away. But....that g-tube will. Someday. And for me, that will be the indication rehab is finally over.

Please specifically pray that Caed's body will begin absorbing and adjusting to this change.