What a week….and it’s only Wednesday!
After getting over a horrible cold that made its way through all 6 of us, including double ear infections for Nicky, my 14 month old, Will, my 3 year old, came down with pneumonia as well as an ear infection and possibly RSV. When he was 7 weeks old, he was hospitalized for 8 days with RSV. It was one of the scariest moments of my life. And ever since then when he is sick, we get very nervous. So, not good news today at the Drs.
When walking into the big Medical building, we noticed a fire truck and 5-6 fire fights walking in as well. About 20 minutes into our appointment, a loud ear piercing alarm went off. At first our Dr. continued with his check up, but after a nurse ran in and said we need to all go, we scurried out of there and were scooted out the back entrance. Our Pediatrician, who I absolutely love, carried Will out himself while I had Nicky. It makes me so happy to know we have such a great Doctor that cares so much for our kids, especially Will. They have quite a little bond.
Will, my 3rd child was born with polydactyl in his right foot and fibrous dysplasia in his left leg. At 7 months old, our Stanford surgeon, who we also trust immensely, performed surgery on Will’s foot. It was a big surgery that required taking a full set of metatarsals out and reconstructing the foot. Will had a cast on for 8 weeks. We continue to see our orthopedic surgeon every 3-6 months for Will. Trying to wait it out to decide when the best time for leg surgery will be. So far he has amazed us all with how far he has come. And so when Will is sick or anything is wrong, I baby him the most. Not because I play favorites, but because with everything he goes through, I want him to know with no doubt, Mommy is here right next to him.
Sometimes I wonder if he has a crooked leg because of me. If having a crooked spine somehow was passed onto him but in his leg. It just breaks my heart. And forever I will be nervous and extra aware of my children’s spines. I hope none of them have to go through what I am. And if they do, I will make sure they get it taken care of as soon as it has to no matter how hard that decision is to make.
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April
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Jewelli| 30th Mar 16
My tears are just running down my face, you are an amazing person and so smart to put this blog together, writing is healing, and those of us with scoliosis know that we need “medicine” that is healing which is the opposite of pain pills! I wrote a book about my great grandfather “The Gentleman Bootlegger” he was famous here in Seattle during prohibition. It was healing to my soul, took my mind off my pain. Now I am pursuing photography which is once again helping me. But you, my friend need to write a book!!! You have writing skills, and so many people are oblivious to our hidden disease. My face looks young, I can walk, but no one realizes when I park with my handicap license plate that I’m in constant excrushiating pain and they cannot see the screws protruding from my skin, I look kinda normal unless I was shirtless… My hump is only visible if I have a skin tight shirt on. And who wants to constantly complain about their pain? That is not funny…we are trying to laugh. We need to have enjoyment in life/a distraction from our disease. Please start writing a book… You could even have short stories from other survivors to educate younger teens finding out they have this. Just a thought… And thank you for sharing your story and photos