Made of Gray

Plans for Boston

Raising the Rare ChildHolly D GrayComment

We've had so much going on lately it's been hard to catch up here. Plans for us going back up to Boston Children's Hospital have been in the works for almost a month now. Our tickets are bought, and our housing and appointments are scheduled out.

We will be in Boston from June 21st through June 27th.  We fly in this Sunday. Caleigh has a contrast enema that Monday, Endocrinology on Tuesday, Upper GI with a small bowel follow through on Wednesday, CAIR (Center for Advanced Intestinal Rehab) clinic on Thursday and Hematology on Friday. We fly home on Saturday. It should be an interesting trip with much to learn. We still do not have a surgery date, but should have a better idea after this coming week. 

Plans for Boston via

This past weekend we took a tiny road trip to west Texas to help Caleigh's future aunt pick out her wedding dress. Caleigh will be a flower girl for the first time this coming November. She is beyond thrilled. 

Plans for Boston via

While we were out there, Caleigh was able to experience a horned toad for the very first time. I was able to play with these guys all the time when I was little, but they quickly disappeared almost on the brink of extinction. They are apparently making a comeback out west. I'm not going to lie here, I was so excited to see this little guy. We gave him some love, named him Henry and then set him free. 

Plans for Boston via Horned Frog
Plans for Boston via Horned Frog

Caleigh has been loosing teeth left and right. She's up to 6 visits from the tooth fairy so far. Most of these teeth have been pulled by Eric while swimming in the pool. It's a weird place to pull a tooth, but it works! 

Since we've returned from our Northeast trip, we've slowly been going up on her calorie intake. This week we are up to 30cal. Just to put this in perspective, we have increased the amount of Elecare cans we use by 25 each month. As a result Caleigh has gained 2 pounds, but seems to be more uncomfortable with her feeds. We've slowed down her rate and she now gets fed the majority of the night as well. Continuous feeds are better than IV nutrition any day. 

Plans for Boston via 

My plan is to update as frequently as I can while we are up in Boston. I have some good ideas for fun things to do, as well as some advice from seasoned parents that are steering us in the right direction. 

We would love your prayers and positive vibes for smooth travel and limited discomfort for Caleigh during all of her tests. I have a feeling we will need to get used to going back and forth this year. 


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