Crash and Walk Again

So, there wasn't a literal crash. It was just a decline that became desperate starting in January after climbing on a water obstacle course. Bean didn't get better after that adventure. She got worse and worse until she was homebound and in a wheel chair for almost all walking. She was down to an average of 150 steps a day with her hips subluxating with nearly every attempt.
While things looked dire, we tried the inensive rehab therapy in downtown Chicago through the RIC pain clinic. We went into it thinking they would help us define the correct support devices for Bean and help her to begin walking again, but this program was not geared for the type of EDS issues that Bean was dealing with. It is a pain clinic geared toward people with chronic pain and the fit was not perfect. There were problem areas where therapists in PT or OT would tell her to ignore burning nerve pain and to push through dislocating shoulders and end of limit pain. While this may work for some situations, it created quite a bit of discord for this situation.
So, after giving that program a good effort and 6 weeks, we stopped and Bean saw her specialist, Dr. Tinkle. Dr. Tinkle knows more about this than anyone we've ever encountered and he was wonderful with Bean. He told her what she needed to hear, educated her, and listened to her, too. I believe that the combination of meeting with him and stopping the RIC program gave her a new energy. She wanted to try walking again. She was asking me to take her out and walk. I was shocked. After months of her giving up, she wanted to fight!
Initially, 100 steps was enough, but it quickly went to 400, then 800 and one day last week she made it to a collective 3000 steps over the course of a day. Our current goal is to get her walking in school without a wheel chair this fall. She will likely still need the chair for flare ups and for longer walking or standing situations, but this progress is amazing and we are renewed and hopeful, again.
She is still not able to do stairs very well. This causes a great deal of pain in her hips, and subluxations. With that comes a fear of falling, as she has lost her hip control on stairs too many times in the past. To help this stiuation, we have moved her living space from the top floor to the ground floor for the past 5 months, and the whole family is now relocating to a house where all the living space is on the main ground floor. This will help keep Bean included in all family activities.
So, we have a post that is positive. It's hopeful. It's heading a direction of ability in a world of decline. I am proud of my girl for each and every step and I hope to come back with more postings that build on this strength and hope.

POTS, fainting and wheelchairs

Well, kiddo climbed a mountain, so to speak, during her little sisters birthday party. She participated in a climbing event that left both her father and I in shock that she could do it! The smile on her face was worth the world. She was so happy, just being a kid.

Fast forward 2+ weeks and she has been dislocating and subluxing daily without the ability to walk more than 15 feet. Her body is screaming at her with every movement as if to say "What were you thinking, treating me like that?". Still, 2 weeks out, she says it was worth it.

This past weekend we saw a bit of improvement, however, today she fainted in school while sitting in her wheelchair. That baffles me. I thought the fainting was only when standing up, sympathetic nervous system, blood pressure etc? This is new, and it isn't good. The one explanation I can muster is to think she overheated, as she did have her winter coat and scarf on, indoors. Still, it's not a comforting feeling over here. Next week is the tilt table test, and new orthotics, so we'll see how that goes.

In the meantime, wheelchairs, help on the stairs, and limited movements while trying to add in some isometric exercises from PT.  Plus she has started taking more medicine. Of course we hoped to avoid that, but Aleve was about as effective as water, so she is trying Meloxicam in the morning, and 1/2 tramodol to help get through a half day of school. Voltran gel applied, topically, to the neck. Even a little aromatherapy from a www.BeanTreeSoap.com  essential oil rollerball. We'll try anything that may help.

This is another day in the life with EDS.

Walt Disney World with Ehlers Danlos Syndrome

I'm curious to hear from you if you have tackled this park with the concern of joint dislocations on getting "bumped" in the crowd. Also, I am curious if a ride has been too rough at a park like this? We have been to Walt Disney World many times.  We avoid the thrill rides and we take long breaks and stop to smell the flowers, but the last time we went we required a wheel chair. I found that this allowed kiddo to participate much longer and it gave her a safe space. When just walking, she can't get very far before her hips, knees, and ankles are too fatigued and with her current and ongoing shoulder instability, the fear of getting bumped is a worry. Please comment with your experiences. I would love to hear how you navigate the "World".
:)

Here are some of our family tips and tricks that we have picked up along the way:

• Go early, take breaks, and don't do it all. The way I figure it, anything we don't cover on a trip is a good reason to go back! It isn't fun if you over do it, and we so often find magic in the unplanned moments in Walt Disney World.
• Go on "green" days. Sites like EasyWDW and Undercovertourist give you advice about which parks are less crowded on which days, and I find that is a good way to travel the parks.
• Use a wheelchair, ECV, or stroller if needed! If walking is not an option for you due to instability of joints or other Ehlers Danlos complication, then take that tool and use it. Also, the extra space it provides you will serve as some protection from getting bumped in the crowds. 
• Wear good shoes. This should be obvious, but orthotics and support are essential when doing walking on a trip like this! Don't let fashion trump smart footwear in this instance.
• Plan ahead. It is very helpful to know what route you will take, what basic rides you want to do, and to schedule your FastPass Plus options in advance. Have meals booked in advance so you have spaces to sit down and rest. We find the long, slow, Disney meals to be a wonderful break from a busy morning or afternoon at the parks.
• Bring ice packs in a small cooler, or instant ice packs. Know where the med care centers are (on the map), and bring required medications in properly labeled containers. Bring any supports you may need.
• Don't park hop. Some may disagree with me on this, and I will say that the exception will be if you go to a park in the morning, take a nice afternoon break at your hotel, then do a second park for a show that night. That is OK, but going from one park to another is adding a lot more walking and travel to your day. I generally plan a day with the minimal amount of back and fourth travel. We will spend a Magic Kingdom afternoon break at a close by monorail resort for a long, slow meal, and a rest by the water before going back to a park. A swim or nap at the hotel is also good. By running from park to park during the day, however, you can wear yourself out just in the process of getting from transportation to the first ride, so I do advise avoiding that when you can.
• Get plenty to drink, stay hydrated, wear sunblock, and follow all the general precautions that would apply to anyone traveling at Walt Disney World.
• Avoid the rougher rides if you can't handle the jostling. For us, the thrill rides are out because our kids are scared of them, but even if they weren't scared, I know my oldest couldn't ride a rough roller coaster, safely. Luckily, Disney has many sit down shows, calm rides, and simple experiences that are still magical without the jarring. 
• GAC card, do you need it? That varies from person to person.  We have not felt the need to use one. When you have a wheel chair, the staff at Disney knows what to do with you and they don't need to a GAC card. If you have a unique accommodation that needs to be made, then it may be right for you. 

So, an average morning for us is to get up early, go to a park before it opens and be among the first in line. We hit our favorite rides, in order that makes sense, and we utilize fastpass plus. We stop for breaks, snacks, shows, or a long lunch. Generally, we are ready to leave the park shortly after lunch and take a break at our resort, or at a restaurant. We can then go back to a park for an early evening show or a few rides with fast pass. Our kids can't make it up to the late shows and they haven't made it up past 9pm on any Disney night in the past few years, so we are early to bed and early to rise. If you are the opposite, you can adjust accordingly.

 As for those unplanned magic moments, there truly are many reasons to go slow. The themes at Walt Disney World are what make such a difference. By going slow and looking at the details, you can uncover magic that is often overlooked. Talking to cast members is often fun and enlightening. I remember during one of our first trips, a cast member noticed our daughters love of reading and she came out of her store and brought a story book. She sat down and read my daughter a story right there in the park, and while that may not sound like much, for my little bookworm, being told a story in that setting with a smiling member of the Disney team was a very rewarding moment. During a different trip, my youngest was so tired, she fell asleep on my lap on a bench. I sat and watched the people go by, saw the show in the distance, and just enjoyed a beautiful day. Once, we stopped to visit the dolphins at the Epcot aquarium and they came right to the glass an interacted with our kids. There are so many moments of surprises and fun that we never would have planned or enjoyed had we been focused only on the rush from point A to point B.

Want to read more? Here is a published article on going through Walt Disney World in a Wheel Chair with EDS. Click here to read . 

Does EDS affect your digestive system? Add travel into the mix and no doubt you have concerns. We have posted many of our meals and photos of the foods we've eaten in Walt Disney World as well as Disneyland online, here. Everything we eat, due to allergies, is gluten free and dairy free. Disney does a great job catering to allergies and diet restrictions due to health issues. Click here to read more.