Open Door

I guess I always assumed when I had children that they would be born with 10 fingers, 10 toes, working limbs & healthy bodies. Juliette certainly appeared that way for the first year or so.

When she was about 1 ½ years old, we noticed she was not using her left arm. Not in a way that suggested she was a right handed child, but in a way that made us think there was something wrong. We discussed it with our pediatrician, who was well connected to Sick Kids Hospital, and she quickly had a team of specialists following us. Thus began our journey of Plastic Surgeons, Genetics testing, 7 MRI’s, nerve conduction tests, physiotherapy, occupational therapy, meetings, Neurologists and Neurosurgeons.

It’s been about 6 years since all of this began, and the most we have received is an “undiagnosed” case (because a biopsy cannot be taken) of Neurofibromatosis & a left brachial plexus palsy lesion, which means she has a lesion growing on the nerves in her left shoulder, reducing the nerve conduction into her arm. The worst part is that it’s progressive. Her left arm is already so much smaller and weaker than her right, and I can’t imagine it getting worse. Her hand is curled inward, and she cannot use her fingers.

There has been some minor bullying at school, and questions have been asked about why her arm looks “that way”…there have been some tears and hurt feelings. As a mother, all I want to do is make it go away. I have a hard time accepting that I can’t “fix” things for her. I still take her to Physio for an hour every week, although nothing has changed in the last year. We still go to every appointment at Sick Kids, even though they keep telling me nothing can be done. Despite all of this, Juliette is funny, friendly, sociable, sweet & kind. She is also very athletic; she runs like a gazelle and can bend it like Beckham on the soccer field.

About a year ago, at my mother’s suggestion and our pediatricians encouragement, I bashfully asked our Neurosurgeon for a second (really a 12th ) opinion. He graciously agreed and thought it would be a good idea. He said he wouldn’t refer us to anyone but Dr. Rajiv Midha in Calgary, Alberta, who has a special interest in peripheral nerve function, injury, repair, grafting, and regeneration. {read about him here} Dr. Midha wanted to see some recent scans, which brought us to Juliette’s 7th MRI, this time unsedated to ensure we could get it done quickly.

There have been many times while parenting my children that they have amazed me. Watching Juliette go through this has topped my list so far. I had so much anxiety leading up to Juliette’s scan that I couldn’t sleep or eat. I kept thinking that she would be scared or anxious or fidgety during her 2 hour MRI. She totally blew me away. Not only did she lie there, completely still in this machine that sounded like an airplane taking off, but she came out of it with a smile. Ugh. Goosebumps. Kids are so cool.

Now that you are all caught up, let me bring you to the present moment. We have an appointment with Dr. Midha, who believes he sees something hopeful in her scans. He said this is not an appointment for Skype, or email or phone. This is an appointment for a trip across Canada to get some answers, and some hope. As I write this, my hands are shaking. I still can’t believe that another door has been opened for her. Sometimes, this can happen if you don't give up hope.

I have always been a strong believer that all things happen for a reason. Those of you who know our family know the unusual story of how we came to be. God blessed us beyond our wildest dreams, and although we are not rich and certainly not perfect, we argue sometimes, and disagree a lot, we are happy. We forgive and love. And so, with that said, regardless of the outcome of this appointment, we will keep going. Life is not always easy and sometimes you have to be grateful for the trials. Sometimes kids live with lifelong disabilities. Sometimes, God made them that way to be a light, and a stronger person. I know that each human being is perfect in God's eyes, and Juliette is perfect to me, too.

So I ask now that you pray for this exciting and mysterious adventure.

And next, I ask that you subscribe to my new blog! It's in the beginning phases right now, but I plan to keep you all posted on this exciting time for Juliette, and some other fun stuff. I think this will be a great way to keep everyone in the loop.

Love,

Danielle

aka

Queen Dee

#neurology #neurosurgeon #disability #childrenwithdisabilities #parent #love #canada #calgary #alberta #toronto #ontario #neurofibromatosis #brachialplexus #prayer #travel #family