Made of Gray

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Holly D Gray5 Comments
We are home and everyone in the Gray house is very excited about it. No more waking up at midnight and 4 am just to take Caleigh's temperature. No more waking Caleigh up for blood pressures and weight checks first thing in the morning. No more. We are home.

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Right before we were discharged the biopsies came back from Caleigh's scope. What they found is a little confusing. Eric and I know Caleigh's insides well and to those that don't, well, it's confusing. In a nut shell what they thought was colon was actually small intestine. Which means that Caleigh has a lot less colon than what was previously thought. This contributes to the numerous liquid stools she has on a normal basis. The "fistula" in the colon, that turned out not to be a fistula, actually came back as small intestine. Are you still with me? This means that there is a narrowing in Caleigh's small intestine. This may or may not be causing any problems at this point. If you scroll down and look at the scope picture I posted; that hole that you see is only the size of a pen tip. This means that everything Caleigh eats has to make it through that hole. She could end up with an obstruction or blockage eventually. As of right now we are not going to do anything about this. We are going to store it in the back of our large Caleigh filing cabinet and come back to it when we need to.

Another thing that was noted was severe inflammation of the intestines. This could be from 3 things. Obstruction, Allergic Reaction, & Bacterial Overgrowth. All of which could be causing her bloody stools. Bacterial overgrowth is the main cause. In a week we are going to do lab work to check for allergens and electrolyte balances. Then we have a follow up appointment with our GI to get more of a plan down. We are back on the Elecare formula which doesn't have any milk products and Caleigh seems a lot happier on it. I think we are planning on staying away from dairy for a bit. Now that we are on the new feeding schedule she has only been having 3 stools a day. This is amazing compared to what we just came from. Going back on continuous feeds is a step back for us. It's hard to give up the progress that we have made. We will get back there. It will just take some time. It will happen.
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Caleigh on her Rody
While visiting Kendall a few weeks back I saw this cool toy/therapy equipment at her house. I just had to get one for Caleigh. She really seems to like bouncing on it and it has been helping with her head control. Although, she likes to lean down and chew on it's ears!

We are so blessed to be back in our home so quickly. The past week was really a blur. Like it didn't really happen. We walked in the door to our house and acted like we had never left. It's strange which things become easy in this journey we are on. Maybe it was easy because it was a short visit. Maybe it was easy because there wasn't a surgery. Who knows? We have been working on getting things going again here at home. I've been doing lots of laundry and lots of scrubbing to get all things 'hospital' off of everything. I think I finally may be catching up now.

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