Dear 2015, You Can Kiss My...

On January 1, 2015, Kennedy woke up at Disney World with influenza, Type A. We spent that morning in a strange urgent care clinic, checking her lungs and obtaining a prescription for Tamiflu. She spent her last two days at Disney World in a wheelchair, insisting on making the most of our family vacation but too weak and tired to do it on her own. That flu turned into double pneumonia, with both lungs taking a long time to heal.

The thing is, I knew. Before she even woke up that morning, she was moaning in her sleep which is a sign of fever for her. I knew it was a bad omen...ushering in the year with a major illness. I knew it was an omen of what the rest of the year was going to be. I tried to ignore it. Afterall, we were in the most magical place on earth. But I knew. 

And sure enough, it didn't stop there. The aftermath of the flu took almost eight weeks to recover from. And right on top of that, we learned the disappointing news that her scoliosis was worsening and she would need a brace to try and stabilize things. Ah, the brace. From the moment the words were out of the doctor's mouth to the fitting appointments to the nights in that torture device. So many tears were shed. Every morning she would wake up in pain and I knew that wasn't right. The doctor kept encouraging her to wear it more, wear it longer at night. That she would get used to it and the pain would stop. But that didn't happen. She got a lot of passes on wearing it over the summer and those were the mornings she would wake up not in pain. 

If anything, I can say that it was a great summer. The beach, scuba diving in Florida, Greece. But as the summer went on, it was more than just the pain from the brace that we were seeing. It was shortness of breath. It was tiring easily. It was fatigue. It was watching her put her hand to her chest. It was seeing her sit on the pool steps while her friends were out swimming in the deep end. It was the quietness, the not wanting to talk or do anything. But I still wasn't sure what was going on. And I still wasn't putting all the pieces together. 

So...I decided to follow her doctor's advice and see a chiropractor to see if he could help with the back pain from the brace and just some range of motion things. He took x-rays to see what he could move and what he couldn't. As he was showing Kennedy the x-rays, the alarms went off in my head. I kept it quiet till I got home and then immediately emailed her doctor. We went back and forth and then I went in for a conference with him. And from there:

He recommended spinal surgery but isn't doing surgeries so sent her to Duke --> Duke ortho thought her symptoms were a little off and sent her to pulmonary before deciding on spinal fusion --> pulmonary discovered her lung function was at 36% and diagnosed her with Restrictive Lung Disease --> both ortho and pulmonary decided she needed an MRI of her brain and spine --> Chiari Malformation and Syringomyelia were diagnosed --> brain decompression surgery was performed to prevent paralysis and permanent damage --> recovery from brain surgery was hell --> and now we're ushering 2015 out with a headache that won't go away, along with some other Chiari symptoms. 

To put it mildly, 2015 SUCKED in Kennedy's world of health. It is not what we had in mind when we cheered at the stroke of midnight last New Year's with Mickey Mouse and all our family. We are not sad to see it go. Not at all.

But, I'm not all that ready or excited to usher in 2016 either. We will be ringing in the New Year in California, which we hope is a great time and the plane ride is not a trigger for any Chiari symptoms. But as soon as we come back, we head straight in for repeat lung function tests. And maybe I should be hopeful that the decompression surgery was a positive thing for Kennedy's lung function. But I'm not. Because I hear her breathing. And I hear her struggling. And I know she's still in trouble. 

After lung function tests, it will then be a matter of figuring out if 1) it could be from Chiari and that the syrinx hasn't fixed itself. And if that's the case, what do we do/how do we fix it. Or 2) if it is from the Restrictive Lung Disease and spinal fusion is necessary soon. I can assure you that none of us are ready for another MAJOR surgery, least of all Kennedy. She just wants to be a normal teenager (oxymoron?). 

So as we prepare to tell 2015 to kiss our a$$, we prepare for 2016 to kick us in ours. Hope for the best, prepare for the worst. And keep fighting daily. She is my fighter. She is my strength.