Made of Gray

Special Needs 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. 

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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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10 Tips For Flying With Your Special Needs Child

Traveling w/ DisabilitesHolly D. GrayComment

Our family is gearing up for another flight to Boston in less than a month. I received so many questions last year about us flying with Caleigh. Often traveling with those who have special needs and disabilities can be tough. There is so much to think about! We've had our share of ups and downs with both airline and road trip travel. I wanted to take the time to write a few tips that have helped our family adapt and thrive while flying. 

1) TSA Cares

I'm a big fan of the TSA Cares Hotline. As soon as you have your flight details be sure to give them a call at 855-787-2227. They ask that you call at least 72 hours before your flight.

There are a lot of moving wheels to TSA so sometimes this works and other times we've been on our own. I say do it regardless if it works or not. It's in the records that you've called in case there is an issue. The first time we flew with Caleigh a TSA agent from DFW called us the night before to find out our arrival plans. When we got to the airport there was a TSA agent waiting to fast track us through security. It worked brilliantly. Each time we've been in Boston and on our way home this has never happened. So we find a TSA agent, tell them that we've contacted TSA prior to our flight, let them know that we are carrying medical liquids, that Caleigh needs a private security check and will not be getting out of her chair. They then work us in but it takes a little longer. In general, patience, humor and kindness will get you through security without an issue. 

2) CARES Child Aviation Restraint

The more we've flown the more we understand that Caleigh's gigantic Britax Pinnacle Booster Seat isn't necessary on the flight. We curbside check it and move on. Dragging it on the plane is a beating. The flight attendants will not and cannot help you install it. I could go on and on, but trust me when I say that it isn't worth the hassle. 

I found the CARES Child Aviation Restraint on Amazon cheaper than Adaptivemall.com. Although there are rules as far as weight, seat position and use that you should read on Adaptive Mall, no one even blinked an eye at us for using it. We plan on utilizing the harness for a long time to come. 

I did make one adjustment to the setup. Caleigh's neck is sensitive and most of her harnesses have padding. The restraint doesn't come with a comfy neck pad so I purchased two seat belt pads to cushion the neck area.  Other than that it is easy to setup in the plane. If your child's extension tone is strong (aka uses a pummel) you may have to adjust their position often and/or cross their legs like we did. 

10 Tips For Flying With Your Special Needs Child via madeofgray.com

3) Don't let anyone "Breakdown or Fold" your child's wheelchair or special needs stroller

Trust me. They will ask you if it can be folded or broken down. Say no! If they don't ask when you are at the point of taking your child out of the chair and handing it off... tell them. This will require them to take the chair below the plane, but it will save you a broken chair in the long run. I know of several families that were left without a chair after someone decided they needed to make it fit. Just say no. Make sure the chair is tagged at the gate with your name. If you have a protective bag for the chair I would suggest using it, but the reality is that there is too much going on to even think about it. If you're worried about damage you might consider carrying travel insurance. 

4) Pack a separate cooler for medical liquids

This is always fun for us since we make Caleigh's jug of formula for 24 hours at a time. We have liquid medications, formula and ice packs. There are rules on ice packs and if they are significantly melted it will set off TSA's alarms. Be sure to read TSA's rules on the subject. We use an old square cooler, but I've had my eye on the Yeti Hopper. It would cut down the need for ice packs, but the cost is pretty extreme. Every time we've gone through security they have had to open her pedialyte bottles, formula and medications to swab them. Most times Caleigh's chair sets something off and they have to wipe it down and swab it too. We've all been chosen for a more thorough security check and it's one of us if not two each flight. It's kind of ridiculous to think about but again patience, humor and kindness will get you through security without an issue. 

5) Check as many bags as you can

For longer trips there is no way we can get around taking at least one piece of luggage each. One of our largest pieces is always loaded with Caleigh's heavy medical supplies. The last airport weigh-in was 90 pounds. We've always sweet talked our way to getting this overlooked. It cost a lot if it isn't something you can get passed over. So take the chance at your own risk. You can curbside check your other luggage, but anything overweight or deemed medical has to be done inside the airport. Of course for us coming home is always lighter with most of the supplies and especially bottles of pedialyte used. I recommend checking as many bags as possible. The less you are trying to take through security and cram in the airplane, the better. We generally board with the cooler, Caleigh's feeding bag, small diaper bag and our full technology backpack. The rest is checked and waiting for us when we land.

* We may try to ship some of the medical supplies ahead of us this time and I'll update with that information soon. 

10 Tips For Flying With Your Special Needs Child via madeofgray.com

6) Choose special assistance when booking your flight and call the airline's disability assistance line

When booking your flight there should be a box that asks if you will need special assistance. Always check that box and answer any questions that pop up. For Caleigh, I usually pick the "bringing own wheelchair" and "medical conditions" options. I always call the airline about a week out from flying. I give them details, mention the medical equipment, liquids and supplies that we will be traveling with. They like to put this information in the flight manifest, so I'm told. This is also a great time to mention checking the medical supply luggage and asking for it to be free. This message never gets transferred on, but at least you talked to __________ at __________ airline about your free checked medical bag, right?

The last time we flew American Airlines we had to get "permission" to fly with Caleigh's feeding pump while it was on and running. This was over the phone. When we got there and onboard, not a soul mentioned anything about it. I chalked it up to red tape and we flew the whole time with the pump running. JetBlue has never mentioned it. Be sure to see what your airline requires. 

I'll also add here that I try to book our seats as close to the front of the plane as possible. It's just easier to get in and out without having to walk the long galley. 

7) Arrive early to the airport and the gate

The standard arrival time is generally 1 hour before your flight. We always try to be at the airport two to three hours before. There will always be something that pops up like long security lines, checked baggage drama, potty breaks and the need for caffeine before boarding. This extra time has giving us an hour to lounge before our flight to fifteen minutes of running to the gate. It varies. Once you're at the gate be sure to check in. Let them know that you will need early boarding with your child and they'll hook you up. Getting to the gate as early as possible gives us some time to stand with Caleigh, discuss the flight, look out the window and decompress. 

8) Don't forget restroom breaks and diaper changes

We've found a family restroom in every airport that we've been to. It can be a popular choice so don't be surprised if you get a knock every few minutes. There is usually a large changing table. Ewww, right? This is gross, but I always bring plastic chux pads to lay down. Fifteen minutes before pre-boarding we set Caleigh on the potty and line her pull-up or diaper with a super absorbent diaper liner (think huge feminine pad). I usually double up on the pull-up as well. The airplane restrooms are not even a choice when it comes to diaper changes or setting Caleigh on the potty. When we've had to change her I lay down a chux pad on my seat, move her over and quickly finish the change. It is what it is. Caleigh's short bowel syndrome requires 12-18 changes and/or potty breaks a day so it's bound to happen on a plane. As soon as we land we head straight for the restroom while our luggage is being brought up. 

10 Tips For Flying With Your Special Needs Child via madeofgray.com
10 Tips For Flying With Your Special Needs Child via madeofgray.com

9) Pack a lot of entertainment

Bring entertainment. Be it a tablet, music, movies, books, snacks, art supplies... whatever your child is into make sure you have it with you. We use earbuds for Caleigh's music and movies. This helps her ears during takeoff as well. We load up the iPad with movies, Dr. Suess and audible books and music and ask her what she wants to do next. The first flight we were ever on she was a saint. Now she knows that she'll be in a loud metal flying box for hours and she gets anxious. We unbuckle her when she needs to move and try to accommodate the wiggles as best we can. 

10) Be kind

In general we've had nothing, but nice people during all of our journeys so far. There have been a few TSA agents that were sour and strict with their position. Being kind and compliant during those moments helps the stress level for everyone. I am one to get an attitude and unleash the bear when necessary, but nearly nine years in; I've learned to pick my battles because tomorrow there will be a handful more waiting on me. I want my child to be treated like everyone else in this world and if that means wiping down her chair and checking for explosives because something set off an alarm.... then fine. Having humor when necessary tends to be my husband's job and everyone seems more relaxed when you actually speak to them. Small talk can go a long way. Flying can be stressful and no one is very excited about it. Everyone is looking forward to their destination and this is the path to get there.

Remember that your children pick up on your stress. Pop your earbuds in and jam out, listen to a podcast, a new book or watch the in-flight movie. Each flight will get easier for your family. You'll get a routine down, your kids will know what to expect and your anxiety will diminish slowly. Just know that you are giving your family experiences by traveling. By stepping out of your comfort zone and thinking about your child; you'll have memories that would never happen from the safety of your home. Best of luck and enjoy! 


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When is Your Kid is Too Big for a Stroller?

Adaptive ProductsHolly D Gray4 Comments

While I was coming up with a post title it hit me that my eight year old was being pushed around in an umbrella stroller, for a week, while we were in Boston.

This isn't a special needs stroller either. 

She's eight years old. It hit me pretty hard. Eight is too big for a stroller. 

Dignity tells us that she should be in an appropriate wheelchair that fits her needs. 

For safety and comfort we decided within four days of our trip that we were going to take our old umbrella stroller with us to Boston instead of Caleigh's manual wheel chair. There was no way we were going to make it an entire week of walking and train rides in the chair that she was already hanging out of. I quickly looked up the weight limit on the stroller and as luck would have it we still had two pounds to go. Golden. 

After a test run at home, we found out that the width was just a smidgen too narrow for Caleigh's arms. So I went searching for something to protect her skin from the bars. I found memory foam Bell Seat Belt Covers on Amazon that ended up being a perfect fit for the stroller, TSA Cares seat belt and now at home, the Special Tomato Chair and Chariot Bike Trailer. I ordered two. I plan on getting more because we can seriously use them anywhere. Since the stroller has a mesh type of plastic on the seat I went searching for a seat cushion. After doing some measuring I decided to try my hand at the Tivoli Couture Memory Foam Stroller Cushion. It fit the umbrella stroller perfectly and made me feel a little more comfortable about taking the stroller instead of the wheelchair. 

Using a stroller instead of a wheelchair brought back a lot of emotions for me. I remember the intense wanting of Caleigh's first wheelchair. I wanted life to be easier for her. I wanted other kids to see her as a three year old instead of a baby. So when I decided to use the stroller my mind went to the "walk" tumblr page. Thank goodness it hasn't been updated since 2011 when the heat of parents pushed it off the scene. I would have gone internet crazy if my child ended up on a too big for a stroller casual post. 

Overall this is my take away... The general public tends to treat individuals that use a wheelchair with respect... or pity and with more age appropriate comments. Add a communication device that is working well and you definitely feel the respect. Caleigh is small for her age. Even so, she is treated like a person who understands the world around her 90% of the time when we are out and about. The stroller changes that perception. I overheard a handful of children telling their parents to "look at that baby." I sent a evil eye to a father trying to calm his crying toddler down by saying "look, that baby isn't crying. Why can't you be more like that baby?" If he only knew. 

The baby perception is huge in a stroller. 

Sure the feeding tube gives away a lot of what is going on when you take a second glance, but Caleigh isn't hooked up to her tube 24 hours a day. Her AFOs might speak to someone else. There are visible signs of disability, but to a quick glance the baby stroller stereotype is there. The stroller even confused TSA agents on our return flight home when they asked Caleigh to get out of the stroller so they could send it through the x-ray machine. 

I'm not going to lie though, it worked. I'm proud that we adapted to what needed to be done. Caleigh came home without sores, continued strain on her spine and a week of me crying over her positioning. She got in over 30 walking miles, whiplash inducing cobblestone streets, bumpy train rides, stairs and a few naps in the stroller. We joked that the stroller had been resting up in the attic for our marathon week of go go go. 

We're in the middle of an epic battle with insurance that will go down in history as one of the most ridiculous waiting periods in all of 2015. In March of this year we decided it was time to start the process of getting a new manual wheelchair for Caleigh. She had started growing with recommendations of Boston's CAIR team and we knew she was going to continue. 

Months later the paperwork was finished. Doctors had signed on the dotted line. Therapists had added their two cents. Caleigh's custom molded seat had been well.... molded to her body. The submit button was pushed. 

Shockingly United Healthcare approved the "majority" of Caleigh's wheelchair. They denied the push handles, hand rims, arm rests and a few other items. This is HUGE though. Not once in the eight years that we have had UHC have they approved a piece of equipment.

Good news, right? Well, the way that the DME company works is a bit tricky. They get an approval, order the equipment, deliver the equipment and have the parents sign a form basically saying that whatever insurance doesn't pay they are responsible for. Then they bill insurance. Then they bill the parents. 

Caleigh has Texas Medicaid as a secondary insurance with the Medically Dependent Children's  Waiver Program. Medicaid typically picks up what UHC doesn't cover. This has been the biggest blessing our family could even think of having. If we didn't have this my friends, we would be writing to you from a cardboard box. They've covered every piece of equipment and medical treatment that UHC has denied over the years. 

Suddenly we have a problem with Medicaid though. They have denied Caleigh's wheelchair twice now. Both times stating that her current chair needs to be repaired. There is no repair for an outgrown frame and seating system. Can't be done. We also received a denial for speech therapy the same week. That has since been resolved, but I swear were on the black list somewhere! 

We've been assured that the new wheelchair is being ordered anyways and it will be delivered, Medicaid approval or not, before Caleigh makes her debut as a flower girl in her Uncle Heath's wedding. 

This has struggle has been heavy on my mind for months now. I'm grateful to be able to choose a wheelchair for Caleigh and have insurance that covers her many needs, but at the same time I'm looking forward to the day she is scooting around in her new chair and not her old "baby" stroller. 

So what would you have done? Would you forgo the age perceptions and went with the stroller or would you have pushed through with the outgrown wheelchair? I'd love to know! 

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Hello Boston - Boston Children's Hospital Update

Raising the Rare ChildHolly D Gray2 Comments

We are now home from our week long trip to visit the CAIR team at Boston Children's Hospital. I am now properly medicated with steroids, antibiotics and a hopped up version of decongestant that is supposed to be healing my massive sinus infection. I don't have a voice at all so writing it will be! 

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We were in Boston for a week this time. Each weekday we had appointments at the hospital and spent more than half the day there. The rest of the time we were on the move sight seeing, dealing with behavior issues that would rival any toddler you've ever seen and eating all the good food we could find. 

Since this post is about the medical updates and specifically what we found out for Caleigh, I'll save our Boston adventures for another post. 

The first appointment was with the CAIR Clinic (Center for Advanced Intestinal Rehab.) This team is the reason for transferring Caleigh's care to Boston and we still love them and their ideas. The are very impressed with Caleigh's growth. She has gained 10 lbs, up to 48lbs, and grown to 3ft. 7 inches since the end of April. She is still small, but now back on the growth charts. If I remember correctly 3% height and 30% weight on the chart. So the plan is to cut back her calories and slow the growth down a bit. We will check her weight locally in a month. 

Caleigh has been urinating a lot since we went up on fluids and calories. We are basically in the restroom every 30 minutes to an hour and if she has an accident she gets very upset about it. Like screaming bloody murder anywhere we happen to be. This includes public restrooms, parking lots, therapy clinics... anywhere. We are going to cut out one pedialyte bolus in the morning to see if that helps. So far it hasn't slowed down though. They checked her urine to make sure there wasn't any glucose in it and it came back fine. There was a trace of protein so we did another urine sample several days later to recheck the amount and right now there isn't enough protein to cause concern. Something to watch. 

The CAIR team ordered a Dexa Scan, which is a bone density scan, and we did that the following day. Overall I'm glad we made the trek to the clinic again. 

The next day we had a genetics appointment. This was our first visit to this clinic. We really liked the doctor. We talked about Gastroschisis, family history and anything that might be lurking in our DNA. She told us that they feel like there may be some "traits" that are linked to couples that have a baby with Gastroschisis, but they haven't found any genetic markers "yet." For couples that have already had a baby with this birth defect the chances of it happening again are raised 2.75% on top of the 1 in 1683 births (in 2009) based on the Texas Gastroschisis rate. This rate is higher than most other states in our country. This throws in the environmental factors and I wont get into that here. So you can do the math, but the chances are it could happen again and I know several families that hit the jackpot more than once on this. 

She ordered labs for a rare cholesterol depletion disorder. This genetic syndrome tends to lend itself to birth defects and certain characteristics that Caleigh has. She was doubtful that Caleigh has this, but wanted to do her due diligence.  So I'm not going to get into specifics until the tests come back in a few weeks... hopefully negative.

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We took the weekend off to run around the city and as you can see in the photo above Caleigh is in an umbrella stroller. This is a whole crazy story, but we have been working on getting a new manual wheelchair since March and insurance has denied it twice so far. We are working on the third appeal and I feel like crying about it everyday. I also feel like taking my child that is falling out of her current chair to the person making that denial and showing them the impact it is making. The new chair is 5-6K so I get it, but she has outgrown her old one. There is no repair or fix for a kid out growing her chair. Ok, off the soapbox. Hopefully, we will get this pushed through.

On Monday we had an appointment with Endocrinology. We are watching Caleigh's premature adrenarche and so far it isn't progressing to puberty. During this appointment we got the results of the Dexa scan. This is a full body scan that measures bone density. The reason behind checking Caleigh's bone density is her past nutritional deficiencies and the healed fracture that was found in her femur when she was in the NICU. Also, this is a common test for people with cerebral palsy because of the lack of daily weight baring. It turns out Caleigh's spine and hips are the worst of the measurements. She's always had the diagnosis of osteopenia but this moves her into osteoporosis zone. Essentially this means that fractures can and probably will happen. I find this pretty scary and it was something I had in the back of my mind but wasn't expecting so soon. I think the spine part really surprised me. I'm pretty bummed about it. This throws kinks into Caleigh's future hip surgery or any surgery she might have. It's more to think about and plan for. 

Our CAIR team ordered more lab tests like vitamin C and D. This is a good baseline and the chance to up Caleigh's supplements. The endocrinologist told us that if Caleigh starts puberty early it wouldn't be such a bad thing because the increased estrogen would actually help her bones. Other than that endocrinology is in the wait in watch mode. 

Early Tuesday morning we had our last appointment of the trip with the tube clinic. For the past six months we've had major issues with Caleigh's g-tube site. It's been terrible. Constant leaking around the stoma, skin breaking down, yeast and then random days where it was completely dry and fine like nothing happened. A lot of it has to do with intestinal motility, but as long as it was leaking or pouring stomach acid around the stoma there wasn't a chance for the weeping skin to heal. When we got to the clinic they were impressed with everything we were doing to try to heal the site and on that day the site looked good. I brought photos of the skin break down, oral thrush and pictures of her bed soaked in Elecare and stomach contents. They offered to hire me to do button care in the clinic, but I declined... Boston winters aren't for me. 

The nurse measured Caleigh's stoma at 1.5cm. Her button was an AMT Mini One Balloon Button 2.0cm 18 french. So we changed it to 1.7cm 18 french and switched to a Mickey Balloon Button. We've used the Mini One for years because it is much smaller, but the hospital only stocks Mickeys. I'm ok with it for right now. It's much larger than the Mini One, but the leaking has slowed down to a crawl and the tenderness is decreasing. We added some extra steps to our arsenal and if they continue to go well, I'll do a post on our routine. The clinic was a success and really made the whole trip. 

So as of now we are waiting on lab work to come back from genetics. Next week we will make a plan for upping vitamin supplements that will support bone density. Right now it looks like we will be going to Boston every six months, so twice a year as long as things stay great. Cramming all of these visits into one week is actually pretty brilliant. Clustering the care helps the different departments work together as a team. It's also very exhausting for the family. Overall though, this was an informative and helpful trip. 


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