Made of Gray

Texas

SPML - The Unexpected Return to the Texas Coast

Raising the Rare Child, Traveling w/ DisabilitesHolly D. GrayComment

Three nights. We made it three nights before Caleigh’s short bowel syndrome caused issues with her SPML casts. Her guts had shut down during surgery on Friday. Sunday mid-morning they thankfully woke up, but wouldn’t stop or slow down. 

Sunday night into Monday, Caleigh woke up with liquid stool from head to toe. The “to toe” part was the issue. It was in her cast. We cleaned it as best we could, I threw all the laundry, including her knee immobilizers into the wash and we went back to bed. 

The next day I started making phone calls and we soon had an appointment in Galveston the following afternoon. So we were home for two days before loading up and heading back to South Texas. 

We arrived at Dr. Yngve’s clinic and they removed the offending cast. The stool had soaked up to her ankle and with it being so acidic we were grateful for a quick removal. Dr. Yngve made sure the angle and area was okay and then she got another purple cast. Caleigh is healing as expected. Her bruising is normal and her need for tylenol is becoming less.

We booked a hotel room on the ocean this time around and made the most of our one night on the coast. The sun was warm, but the wind was gusting 20-40mph the whole time. We didn’t explore as much as we would have otherwise. Maybe we’ll inspect the coast a bit more for Caleigh’s four month follow-up. 

At bedtime, we now put Caleigh’s knee immobilizers on over her casts and then wrap four gallon trash bags over those. She wakes up sweaty, but at least they are protected from any other diaper mishaps. 

Give or take 1200 miles... the Lesson was Learned.


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Caleigh Meets a Horned Toad

Traveling w/ DisabilitesHolly D GrayComment

Horned toad, horned frog, horny toad... TCU fan? Whatever you call them they are almost gone. Growing up I called them horny toads and our backyard was a little suburban wonderland for the soft bellied friends.

When we were in west Texas searching for bridesmaids and flower girl dresses for uncle Heath's wedding; we ran into this guy.

To be 7 years old and never have seen a horned toad is a crime. I'm told they are going extinct. The Fort Worth Zoo keeps these in an exhibit. I've heard many reasons why their numbers are falling. Urban sprawl, fire ants and lack of red ants which seems to be one of their main food sources. Whatever it may be, it's sad because a horned toad screams childhood fun to me.

My nostalgia kicked in heavily. The last time I remember playing with horny toads was in my backyard a good 20 years ago. There were two adults, a baby and I remember it vividly.

We let Caleigh hang out with the lizard, who really isn't a toad, for quite awhile. We ended up naming him Henry. She was hesitant at first, but started petting him when she realized he was sweet and un-horned. We did a tiny photo shoot and then had a release party by the red ant bed across the street. He scurried off quickly not stopping for a bite.

I'm hoping that we can bring the horny toad back in great numbers to Texas. What a childhood and environmental shame if we can't.


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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 CaleighsCorner.com

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 CaleighsCorner.com

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 CaleighsCorner.com Horned Frog
Plans for Boston via CaleighsCorner.com 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 CaleighsCorner.com 

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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