05 Apr Family Friday – Ropes Course and Ehlers Danlos Syndrome
Over spring break we were able to visit Thanksgiving Point in Lehi, Utah. It was fun for the whole family!
Last week I wrote about our experience with the Butterfly Biosphere and the ice cream shop.
It was a great experience!
Later on in the same day we were also able to visit the Thanksgiving Point Farm Country and The Children’s Museum of Natural Curiosity.
The highlight of Farm Country for the younger kids is being able to ride the ponies. They were grinning from ear to ear.
When my older kids were little we lived right near Thanksgiving Point and were annual pass holders. It was much smaller then, but they remember visiting Farm Country and riding the horses in the little circle. I think I have a picture of all of my kids on those little horses. I’ll have to dig them out someday…
We live in the country but we don’t have a farm so the kids had a great time being able to feed all of the different animals and see them all up close.
Then we were off to visit The Museum of Natural Curiosity.
My kids had a blast!! My younger girls really enjoyed all the different “hands on” activities that they could experience in the different “neighborhoods.”
While exploring through the large tree house my girls noticed a high rope course literally hanging from the ceiling. They were so excited to try it out.
We paid the extra $7 per child to participate and then they were secured to the different harnesses that connected their tiny bodies to the ceiling. My older kids were excited to try this activity as well and joined in on the fun.
I was so nervous and excited for my youngest, Allie. I thought she would be too nervous to try out the cope course, especially because it was 3 stories off the ground, but she went ahead and conquered it right along with the rest of them!
Allie was diagnosed with Ehlers-Danlos Syndrome when she was around a year old and she’s now 10.
I almost hate to even put this out there because she is doing so well but I’m just so proud of all she has overcome and accomplished.
When she was 9 months old, I could tell she was different physically from our other kids when they were her same age.
She couldn’t sit up or hold herself up at all, her muscle tone was so low that she would just flop over.
So we had her evaluated and decided it would be best to start physical, occupational and speech therapy while we were trying to figure out what was going on with her body.
She had therapies almost every day.
While we worked on strengthening her body we visited with a geneticist in Phoenix for an evaluation and blood work. The geneticist was the one who eventually diagnosed Allie with Ehlers-Danlos Syndrome hypermobility type with low muscle tone.
So, we continued with the therapies and started the many doctor appointments that followed.
There are about 10 different types of this syndrome. If you’ve never heard of it, it’s a syndrome that affects the collagen in the connective tissues of the body.
The following was taken from www.ehlers-danlos.com
“Collagen is the most abundant protein in the human body.
It provides the structural strength in most human tissue, including the heart and blood vessels, eyes and skin, cartilage and bone.
When muscles, ligaments, tendons and even large organs are built with structurally defective collagen there is systemic weakness and instability evident throughout the body.
What is Ehlers-Danlos Syndrome.
Excessively mobile joints, chronic pain and skin softness characterize Ehlers-Danlos syndrome (EDS). At least six types of EDS have been identi ed; clinical manifestations vary according to type and may also include high myopia, photophobia, poor wound healing with atrophic scars, easy bruising, and generalized connective tissue fragility. Each type is thought to involve a unique defect in connective tissue, although not all of the genes responsible for causing EDS have been found. Within each family the type of EDS runs true, but individual family members may vary in clinical severity and manifestations.
As a group of genetic disorders of connective tissue, the estimated prevalence of EDS is 1 in 5,000. It is known to affect men and women of all racial and ethnic backgrounds.”
So, since our entire bodies are made up of connective tissue, it can affect everything or anything in her body. The first several years of her life were spent at countless doctors and specialists to get a baseline for all of the different systems in her body that could be affected by the syndrome.
We spent countless hours at Phoenix Children’s Hospital…
We saw an orthopedist for the hypermobility in her joints. We saw a pediatric cardiologist for her heart where they detected a difference in the pressure on one side of her heart and a mild irregular heart beat which has corrected itself. The physicians surmised that removing her tonsils and adenoids because of PFAPA (which I talk about here) could have remedied some obstructive breathing which could have increased pressure in the heart.
We saw an ophthalmologist to get a baseline for her eyes that can be affected and occasionally she has problems with her pupils dilating to different sizes. (we are still watching this one)
On and on…
LUCKILY, She has the most mild hypermobility type and deals with subluxation and dislocation occasionally.
This passed year she dislocated her knee while jumping on the trampoline but this is the first major dislocation we have had to deal with thus far.
When she was learning to crawl she was so flexible that she would lay on her stomach, push up with her arms, and her legs would go from behind her all the way around to the front of her.
(I’m searching for video we have of this, you wont believe it unless you see it.)
When we would stand her up on her legs to try and help her stand, her knee joints would dislocate backwards and this combined with her lower muscle tone, they looked similar to how a stork looks when standing up.
The hardest part was the amount of pain I believe she had to endure. Ehlers-danlos syndrome can be incredibly painful.
Allie cried CONSTANTLY…
I felt helpless as a parent. Nothing is worse than not being able to help your child.
She cried and wanted to be held all the time.
She didn’t walk until she was almost 2 years old. We had taken her in for a test where they injected dye into her bladder to check for abnormalities in her kidneys, which was incredibly difficult to do on her. She had been tested and prodded so much that she would scream as soon as we entered a doctor’s office. She would scream and just about climb out of my arms scared to death of what she would have to endure.
This time they held her down and injected the dye while she screamed her head off. I believe her hips must have been out of alignment and the force of 3 nurses holding her legs down and in place must have popped them back in because we came home from the test that day and she stood up and walked across the room.
My mother in law was visiting and we all couldn’t believe what had just happened.
Allie has amazed us like that through out her whole life!
At times I would get discouraged with worry that she wouldn’t be able to do what other kids do and she always proves me wrong.
She did scream and cry until she was 5 years old. My husband and I still remember the day she stopped crying. She would cry every time we would put her in her car seat or in a stroller or cart at the grocery store.
Then one day we were headed to the store and there was no screaming, my husband and I both did a double take to make sure she was really in the car with us.
I think her muscles finally strengthened enough to hold her joints in place and the pain stopped.
She was also delayed in her speech because the muscles in her mouth had to be developed, her lack of the ability to communicate also was frustrating to her, so she would scream to get attention for what she wanted.
We spent time teaching her sign language to help her. It did!! She could communicate with us…finally!
She could tell us she was thirsty, hungry or wanted milk or more food. It saved us for several years until she had developed her muscles enough to be able to talk.
Like I said, this girl is an absolute rock star! She conquers everything she puts her mind to.
Writing in school was incredibly difficult for her with the hypermobility in her hands but she worked hard at it and can keep up with all of her peers now.
Where she once couldn’t pedal even a small tricycle she can now ride a bike, scooter and run just fine. She plays just like everyone else at everything, with the exception of being careful that her knee doesn’t pop out of socket.
It’s been a couple years since we have had to visit any specialists. I’ve been told that her symptoms may worsen as she enters puberty but for now she’s doing normal things just like everyone around her.
Our secret so far, I think, is that we don’t talk about it or focus on her syndrome.
I did in the beginning but then once she made progress the urgency of her syndrome lessoned. I let her set her pace. We just talk about how flexible she is and that she needs to be careful when her knee pops out but I don’t want to hold her back because she surprises me every day with all that she does!!
That was a long side track to tell you my hypermobile, once unstable, scared of heights and everything little girl has grown up, conquered so much, loves life and gosh darn it she rocked that ropes course three stories above the ground!