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Family Travel

A Christmas Vacation to Disney World

Traveling w/ DisabilitesHolly D. GrayComment

Back in March, when we were thinking about taking Caleigh to Disney World, we looked no further than Caleigh's Nanny Lisa. Her gig has been as a Disney Travel Agent for several years and she truly knows and loves all things Disney. We set our sights on December and she took it from there. I seriously didn't look at anything until we pulled out of our driveway two weeks ago. The frazzled planner in me loved that! 

When we started planning for Disney, Caleigh's surgery wasn't even a thought yet. We were still coasting along and the family flu event in April hadn't happened. I had finished applying to grad schools and the thought of having a fall semester didn't cross my mind. Little did we know how packed 2016 would get. 

Caleigh's love for Disney comes down to three things... Phineas and Ferb, Tinkerbell and the new live version of Cinderella. 

For this vacation we booked five nights at The Art of Animation Resort at Disney. We actually ended up getting to Orlando early and Lisa helped us get an extra night at our resort instead of staying outside of Disney. 

The first day we went to Hollywood Studios...

Caleigh was disappointed that the castle and all things Disney Princess weren't actually at Hollywood Studios. Unfortunately, there was a private event happening at Magic Kingdom that night and access to the park would be limited. Caleigh was a bear all day. She was interested while we were on the Toy Story ride and at the Sing Along with Frozen, but in between was rough. The Toy Story ride was completely accessible and Caleigh was able to stay in her wheelchair. For the sing along with Frozen we were put on the first row dead center. The snow, songs and sweet smelling fog were in our face. My advice would be to hit up Magic Kingdom the first day if at all possible. We didn't know what Caleigh's expectations were. I was chalking it up to another gem of the nonverbal barrier, but I was talking to another mom the next day and her daughter had the same let down as Caleigh. We weren't alone. 

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The second day we went to Magic Kingdom... 

For each day we decided to drive our car to the different park areas instead of riding the bus. I wont get into my issues with needing to leave the scene and not wait on anyone else (control) but that's why we drove. For Magic Kingdom, you still have to park and be shuttled either by monorail or ferry to the entrance. We chose the monorail. After an hour of being stuck on the track just off the un-boarding area, listening to people lose their minds, bang on windows and freak out; we were manually removed from the train by having the door pried open and then climbing over the seats. So much fun with a wheelchair. 

Main Street was packed with everyone taking photos in front of the castle. We were able to change and take Caleigh to the restroom in the baby care area, and later in the first aide area for more privacy. We headed to Starbucks and used our snack credits on coffee at least twice a day for the rest of our magical visit. Lisa set us up with some wonderful fast passes. These are scheduled times to show up for a ride so you don't have to wait in the stand by line. Tales with Belle was the first experience. Caleigh seemed to enjoy it, but didn't really like the spot light. We ate lunch and headed to Main Street to find a spot to see the parade.

The parade on Main Street... crowded was an understatement. It was nuts, but we got a front row seat to the 3pm parade. By the time it showed up Caleigh was yelling, red and hot. The sun was beating down. Everyone was so hot, children were crying and it was so crammed there wasn't anywhere to go. 

As soon as the parade passed we headed to first aide where we stripped Caleigh down, gave her iced pedialyte and tried to get her cooler. We stayed for a little over an hour. It could have been worse. I'm glad the first aide area was there and so close to where we were sitting. Tip: Don't sit in the sun waiting for the parade. 

Our second fast pass was The Seven Dwarfs Mine train. The mine train was the highlight of Caleigh's Disney visit. If she could stay on the ride and go over and over she would have gladly traded everything else. She was pumped. Fast, bumpy, dark and scary are her thing. I'm pretty sure I haven't been on a roller coaster since Caleigh was born. Laugh all you want at my crazy face. It was hilarious! Caleigh loved it. 

We had dinner reservations and then went to the Under the Sea Ride. By this time it was dark, the castle was lit up and we were trying to decide if we were going to stay for the fireworks. We used Caleigh's guest pass to put in for another ride on the Mine Train. While we were waiting for our time she rode the tea cups, dumbo, goofy's barnstormer and it's a small world. Rides are her thing. We finished the night with the Mine Train and then hurried out of the park and on the ferry (not the monorail). Caleigh was asleep and Eric and I watched the fireworks as the ferry pulled away. It was a perfect way to end the night without the crowds. 

The third day we went to Epcot...

After a fun filled day at Magic Kingdom, the adult filled experience of Epcot wasn't on Caleigh's to-do list. I see Epcot as a great place to shop, eat and check out the Epcot ball. What, no mine train today? Caleigh wasn't impressed. She rode the Finding Nemo ride, and then we ended up skipping the spaceship earth ride. We walked around for a few hours waiting for the Frozen experience ride. When we went to check in with our fast pass we were told it had been down the entire afternoon. Bummed, we headed to our dinner reservation and luckily they were able to get us in a little bit early. We ate at Coral Reef while divers swam in a giant aquarium. We left Epcot just after dark and got to bed fairly early. 

On the fourth day we went to Animal Kingdom...

I woke up on this day with my best energetic go getter attitude. The disappointment of Epcot wasn't going to follow us to Animal Kingdom dang it! Our first fast pass was at 9am riding the safari. We hurried, grabbed our Starbucks iced coffee and headed in. The safari was nice but totally scripted down to the "Oh, look at the elephant! It's perfectly positioned for you to take a photo." As it eats from the perfectly positioned tiny bit of hay. We're spoiled having the Fort Worth Zoo and Fossil Rim so close to our house, but I imagine those without access to wildlife would be super impressed. Caleigh enjoyed the bumpy truck ride and that's what counts. 

Our next pass sent us to the Lion King show. It was a fun, choreographed dance, singing and had some major theatrical special effects. Caleigh enjoyed it as well. We ate some yummy food in the Africa area and then headed to Dinosaur. Caleigh loved this crazy, dark and scary ride. We rode it twice in a row. By dinner Caleigh was worn out and very particular about the characters coming up to her. She didn't like it. We had dinner reservations where Mickey, Donald, Daisy and Goofy walk around to each table. Caleigh wanted autographs, no touching and no photos. Very specific. We left after dinner and got in for an early night of sleep. 

On our final day we went to Disney Springs and Magic Kingdom...

Caleigh's day started out with an appointment at Bibbidi Bobbidi Boutique as a gift from Mrs. Lisa. She loved every single second of this. We brought her own Cinderella halloween costume, she chose her hair style, makeup color and had her nails painted by the Fairy God-Mother's in Training. Caleigh loved this SO much!


Pampered and princess like we headed back to Magic Kingdom. This time we chose to take the ferry over. Good choice. 

Our last day at Disney World was pretty magical and moved fairly smoothly. We knew where things were, back ways and where to avoid the clumps of crowds. Caleigh met Tinkerbell and she actually enjoy the interaction. They talked about their matching hair buns and the importance of fair dust. It was cute and very quick. We showed up to Flight of Peter Pan over an hour late for our fast pass, but they let us get on. It was a great ride and extremely fast. It took longer to get Caleigh in and out of her chair to experience the whole ride. 

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We headed towards our third fast pass which was Pirates of the Caribbean. We got hung up with the parade, but it didn't take too long to pass by. Pirates of the Caribbean was very well thought out and the quality of theatrics was pretty impressive. We transferred Caleigh into the boat with us. While in the area, we went to the Tiki Room and enjoyed some Disney nostalgia. Right after we got off the ride we headed back to the Mine Train and got Caleigh's guest pass. The wait was two hours. So they gave us a time to return. 

We went and got Caleigh dressed back up in her Cinderella gown. After the over heating incident, we convinced her to take it off during the day and change back into it for our dinner at Cinderella's Castle. When it was time to go into the castle for dinner, we were ushered straight to Cinderella for a photo. We were then called up to the small dining room. This reservation is incredibly difficult to get. Lisa made some magic happen here. They were incredibly helpful with all of my dietary restrictions and the food the entire trip was fabulous. Gluten free and vegan waffles every morning, yes please! Nothing different in the castle. They introduced Aurora, Ariel, Snow White, and Jasmine and then the princesses went from table to table taking photos and chatting with the kids in total character. It was adorable. Caleigh wasn't too interested in the meet and greet other than seeing Ariel. 

When we were finished eating, we headed straight back to the Mine Train and Caleigh got to ride it one more time before we headed back to the ferry for the evening. It was a good end cap to our trip and we left at just the right time. 

 

I was really impressed with the accessibility of the parks, the rides and the kindness of everyone. The guest pass worked after all the fast passes where used up and you could only have one out at a time. Some of the smaller rides let us on right away when we asked, but the rides like the Mine Train had to go by the standby times. We barely waited in any lines for rides. We waited for the restroom, photos and food longer than the rides. It was perfectly planned. 

I'm so glad we experienced Disney with Caleigh at this age. We're blessed to have the funds and the time to do things like this with Caleigh. We've never had so many family photos taken either! Lisa planned this trip perfect for us and I'm so excited that we got to experience each park for a full day or more. Caleigh loved all of the princess attention and especially the salon pampering. If we go back it will definitely be during a cooler month, and we'll keep to Animal Kingdom and Magic Kingdom. For the cost, the Boutique is a must stop for any little girl.

With Caleigh it's good to have a down day in between with some swimming, shopping or a movie day at the resort. Caleigh's impatience was disappointing and I didn't expect for her to be bored if we stopped moving her chair for any reason. With short bowel syndrome and feeds there was a lot of breaks. She was overtired and overstimulated the majority of the trip. In my mind, our first visit to Disney World came with a vision of how that should look. That's my hang up and of no fault to anyone else. There were wonderful magical moments, but just like everyday life, I'm reminded often that I need to adjust my expectations and dreams as a parent, no matter how magical or dreamy a place can be. 

We packed up, walked around the resort lake that last morning and then headed out of town. 

Caleigh woke up at the beach the next morning...

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SPML (PERCS) Surgery

Raising the Rare ChildHolly D. GrayComment

Want to read the first post in this series? Start here...

I'm writing from home after our weekend adventures in Houston. Caleigh officially saw Dr. Yngve in his clinic and had the PERCS procedure with alcohol nerve blocks on Friday morning. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com
SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

Our arrival time at the surgery center was 7:30am. We woke up, showered and made a beeline to Starbucks for some quick caffeine. When we arrived they took us right back to the pre-op area. We were told that Dr. Yngve was in surgery with his first case and that Caleigh was next. 

Caleigh finally went back to the operating room at 9:40 and by 10:50 we were getting the okay by Dr. Yngve in the waiting room. All went well during the procedure. It was another hour before they called us back to see her waking up in recovery. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

In general, Dr. Yngve's harder cases or more complicated kiddos have their procedures done at the children's hospital in Galveston. For whatever reason he decided that Caleigh was well enough for the League City out-patient facility. There were two anesthesiologists, multiple residents, and several nurses on board for Caleigh's surgery. About half a dozen people were there. I'm not going to lie here... it was a concern of mine. We've never had anything done outside of a children's hospital, but I'm happy with how we were treated and how Caleigh's case was handled. 

Dr. Yngve is a man of little chit chat, but if you have questions or comments he answers them throughly. He knows what he is doing and you can tell that helping kids with this procedure is very important to him. We really felt comfortable. 

There were some issues with the medication for pain that Caleigh was prescribed on our request. Since she can't have the dyes or fillers that most meds have we asked for suppositories. We tried several pharmacies and called others and no one had what we needed in stock. So we made the decision to pick up the regularly prescribed meds and hope for the best in the tummy area. We should know how that works out this coming week. With these meds, the first night and long drive home was relatively easy.

I will say that a stool sample earlier this week was positive for blood. So we were going into this knowing that we will be returning to Boston soon for an upper and lower scope. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

We are still waiting on her bowels to wake up and start moving again since the anesthesia and morphine. So when we got home we asked Caleigh if she wanted to stand in her stander. She immediately said yes. We decided 30 minutes was enough and helped her out, but she totally conquered the first stand. We have strong instructions to get her back up and going as soon as possible. The more she stands, walks and moves... the better. 

As of last night night we had to slow her feeds down and switch to a pedialyte drip. We've stopped the heavy pain meds and moved to tylenol. We're hoping that her intestines wake up and do their thing soon. As of now her abdomen is large and we pray that we don't have to head to the hospital. She is thankfully staying hydrated as of now. 

UPDATE 1/21/16 - I'm pleased to share that Caleigh's intestines have woken up as of this morning. 

Caleigh is rocking super star purple casts on both legs. She smiles about her choice when we talk about it. This week I will be in search of stylish socks to wear with her shoes while she's up and at it. Caleigh will have her casts for one month and she will have to wear the knee immobilizers for two months at night, which may be the hardest part of the whole procedure. 

Other than our usual short bowel concerns, the whole experience has gone pretty smoothly. We can already tell a difference in Caleigh's intense extension tone. When I expressed concern that she would lose all of her tone; Dr. Yngve said that Caleigh has enough tone for several adults.  One day out and we can see that she is still able to use it. Now we start the therapy needed to strengthen her weaker muscles and hope for a more relaxed state. Overall we are happy, but I'm not counting my chickens until the casts are off. 


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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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The Bostonian Summary

Raising the Rare Child, Traveling w/ DisabilitesHolly D Gray2 Comments

We’re home now and overall Caleigh had a good week in Boston. As I wrote on Tuesday, her Monday barium enema was a little rough on her system, but she seems to have recovered from it now. 

On Tuesday we met with Endocrinology about Caleigh’s premature adrenarche and dumping syndrome. They had a lot of suggestions and options related to premature puberty if Caleigh continues to progress in that direction. Interestingly enough the dumping syndrome that comes and goes for Caleigh makes sense for them. 

They told us that there is new research that suggests that your body releases certain hormones that help regulate your insulin levels as food moves through your stomach. Since Caleigh’s pyloric sphincter has shown us that it stays open while food is moving through; her stomach actually dumps her formula straight into her small intestines. So if this research is accurate, her stomach doesn’t have time to produce these insulin helping hormones. 

The endocrinologist wants to admit Caleigh at some point in the future to monitor her blood glucose and hormone levels by IV throughout her feeds for 24 hours. This will tell us what her sugars are doing and might give us some answers. All in all, this is related to her anatomy and not something that is an urgent test. 

The Bostonian Summary via caleighscorner.com

The Bostonian Summary via caleighscorner.com

On Wednesday, we were back in radiology for a upper contrast study with a small bowel follow through. We were there for several hours while they took x-rays and used the fluoroscope to see how things moved through Caleigh’s abdomen. Her motility isn’t what it should be, but we knew that. She is also having some serious reflux while laying down and we knew that as well. The best finding of all is that her intestines, in certain areas, actually look like intestines instead of large barium filled blobs. This is great news. 

On Thursday we went to our CAIR clinic appointment. We saw Caleigh’s nurse practitioner, nutritionist, social worker and GI doctor. Earlier in the week we did lab work and collected urine so that we would have the results ready for this appointment. Everything looked wonderful as the results rolled in. After getting both the upper and lower contrast results the clinic team feels like we should wait and hold off on surgery. Did you read that??? 

We are going to wait and see!

If Caleigh has another bleeding event like she has been having each month so far this year; then we will fly up to do a scope and make a plan from there. It leaves everything up in the air, but at the same time she looks good. She’s gained 3 pounds since May and she’s grown 4cm. She’s tolerating 30 calorie formula like a champ. They have a strict don’t fix it if it isn’t broke policy. Treat the patient not the lab results. Caleigh’s health is looking much better since we saw the team in April. She still has the narrowings and those won’t go away without surgery, but for right now things are working well and she’s growing.  

On our last day we went to Hematology. Since Caleigh is the carrier of two copies of the MTHFR gene her surgeon wanted to make sure she was followed by hematology. Having MTHFR poses a threat with clotting if surgery is on the horizon. After meeting with hematology we have a better grasp on what Caleigh needs. When we get settled in here at home we will go get her homocystine levels checked. If this test comes back high it shows that the MTHFR is blocking an important protein. It’s semi confusing, but if this is the case she will need to take a folate supplement, something that Eric and I are already on. MTHFR is such a new finding, as far as genetics goes, that the research on it is changing daily. 60% of our population is a carrier and I imagine that more and more findings will come out related to it. 

The Bostonian Summary via caleighscorner.com

The Bostonian Summary via caleighscorner.com

In between all the appointments and tests we made it a goal to do something fun everyday. The weather was absolutely perfect starting on Tuesday. We walked and shopped in Coolidge Corner on our first night. We took the train to the Boston Common and Public Gardens. We walked along Commonwealth Avenue. We did a Duck Tour and Caleigh loved it. The idea of a car that is a boat is pretty amazing for a seven year old. Our tour guide was funny and Caleigh loves all things history so she was sold. We ate dinner in Brookline Village one evening. We did take Caleigh to see Inside Out down by Fenway park. She didn’t like the movie and told me that it was boring, but we did it. 

On Friday night we took the train to the Boston Children’s Museum. It’s a beautiful area and the museum is amazing. On Friday nights it’s only a $1 to get in. We showed up an hour early not knowing about the discount. So we walked down by the water, sat on the pier and enjoyed the view until it was time to get in. Caleigh had a lot of fun at the museum (ok, we all did) and I imagine if we’re ever up in the area for awhile we’ll stop in again to play. 

When we left the museum we decided to walk around a bit and ended up in Chinatown for dinner. We got back to the house a little late, but with it being our last night in town we decided it was worth it. 

We are all worn out after the week of appointments and sight seeing. It’s good to be back in our own home and our own beds. Especially without the stress of surgery on the horizon. We have a follow-up at the end of September where we’ll actually see a genetics team. We’ll go to the CAIR clinic and Endocrinology at the same time. Until then we can breathe a little easier and enjoy the rest of our summer hoping that nothing urgent comes up in between. 


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