“He has what???”

Today I am going to talk about Caleb… “my Cabby”.

Caleb is number 3 in the line and the only introvert that I have! He is quiet and loves his mama.

He is 5 and probably has one of the best imaginations of all my quartet. He is happy playing alone and he loves books.

When he was growing in my belly. He gave us quite a scare when the doctors thought he had “black bowel”, a condition common with babies who may have Cystic Fibrosis or Down Syndrome. They did multiple ultrasounds and followed him closely and I believe that God touched him from the very first prayer that went up.

caleb baby

Of all my quartet, he took the longest to learn to walk. He prefered to be carried and even after he started walking, he was content being stationary with cars and books. We later thought he was just a little on the “lazy” side. Completely different from his brother and sister.

We quickly learned that Caleb was probably one of the clumsiest children ever! By his 2nd birthday he had stitches in his lip, staples in his head twice and stitches in his eyebrow, all from random falls. I knew the ER must think something suspicious was going on but he was just so “accident prone”.  Caleb became my bubble boy. I was always worried that he was going to get hurt at any moment.

While on a vacation when he was about 3, he started to complain about his legs hurting… again we thought he was lazy and just didn’t want to walk anymore. So I carried him, or always made sure to have the stroller. My introvert was becoming more isolated.

caleb maine 2

When we got home his legs were still hurting and some mornings he would wake up and not want to cross the room they hurt so badly. Then the pain started to show up in his hands, so much that he didn’t want to hold a pencil or open things, like bottles. Then, his arms started hurting in his elbows and I became more concerned.

That’s when my mama radar started going off.

My first concern was cancer, only because of Braxton’s history. So I took him to the pediatrician where they too, became a little concerned. After blood work and some minor testing, they still had no answers. They sent him to have a bone scan done in Cincinnati just to make sure they were not missing something. It came back ok. So, as relieved as I was, I was still concerned because we still had no real answers and he was still hurting.

The next step was Rheumatology to rule out Juvenile Arthritis. Although he had no markers they still wanted him to be seen. We had been going to doctors for about 3 months at this point so I was ready to have some kind of answer.  Thankfully, the doctors at Cincinnati Children’s Hospital were wonderful. They tested him, had him do several exercises and finally we had an answer!

IMG_2251

Caleb has “Ehlers-Danlos Syndrome”, it’s rare and difficult to diagnose and inherited. It explained his clumsy demeanor, his pain and discomfort and his flat feet. We learned that he was only using about 50% of his leg muscles and that he was overcompensating in those muscles. Explaining the pain. They explained that he was going to have to work a little harder to strengthen the other muscles. People with Ehlers Danlos also have hyper-mobility and double jointed areas and this makes dislocations common. They are often tired and strenuous activity can be difficult because they are overexerting muscles that they don’t commonly use.

They told us to avoid any high impact activities like football and jumping. I’m thinking “he’s a boy, his whole life is going to be high-impact“.

It is very under researched and often times misdiagnosed.

We were set up with physical therapy, he was given shoe inserts and things became a little easier for him.

Today, he runs and plays with kids at preschool with very minor discomforts. His physical therapist was wonderful and he has overcome several obstacles and now he loves to write and color.

I have learned that you have to adjust and with more than one child you sometimes have to adjust to more than you would have expected. Caleb still has days when his legs and hands hurt him quite a bit but for the most part he is overcoming daily.

He has a very mild case compared to some that we have read about and for that we give God all the glory.

Learn more about Ehlers-Danlos Syndrome here.

Happy Wednesday

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5 thoughts on ““He has what???”

  1. I really enjoyed your blog! I’ve been looking for others like me. I’m 17 and just got diagnosed in November 2016. I’m still really new to all of this..To be honest it’s quite scary.

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    • Caleb has a very mild case of EDS it mostly affects his legs and hands but we are learning … he has responded well to physician therapy… I am hoping that Caleb’s story will encourage you and please keep reading as I update on his progress. Stay strong and positive …. sending good vibes your way and know that you can do this. Now, you know what you have and you can overcome it too!!!!

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      • I will most definitely keep reading! Caleb seems to be such a strong and sweet boy! We can get through this together..it’s going to be a long journey with many obstacles but we can do it! I would love for you to keep posted on my blog too! I’m just starting out but hope to post my story soon! Bless your family!

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