January 4, 2013

Trying to remember where I left off. Things have been OK. George and I have been scared out of our minds the past couple of weeks. We have been working to figure out Clayton's respiratory issues. Overall, we think that he is having things like the flu or croup that are causing respiratory issues that are then made worse by his scoliosis. However, we have been trying to make sure it isn't anything else either. No scar tissue from intubations or Tracheal Malaysia or anything. We saw an ENT Thursday and he said from his standpoint things looked fine, but that we need to see a pulmonologist who might want to scope his lower airway. So we are trying to set that up for our next NYC visit the week of the 14th. We are also working hard to keep him healthy and away from germs since getting sick still seems to be so detrimental to his health. In the meantime, George and I spend hours watching him sleep. Often afraid every slight cough means the worst. We finally got our best night's sleep in a while on Wednesday night.
Overall though, you would never know that anything was going on by the way he is acting. He is laughing more than ever these days and it is so wonderful for George and I to see. I think after a year we are tired and run down and feeling a bit like our hearts and our nerves can't take much else, so to see Clayton laugh so much is amazing.
We are trying to make some big resolutions though. Inspired by Clayton's health, we are trying to make our lives as organic as possible. I'll share some of those changes soon so if anyone wants to jump on that band wagon with us they can!
Lastly I have been holding on to something for a while...a beautiful little girl named Megan died. She passed away December 19th. There was no media attention or celebrity outrage. She died silently after suffering at the hands of cancer. I have been struggling with a lot of emotions about it and I will come back with more on that another day. For now, may Megan's sweet family find peace and may all the kids out there suffering from cancer be granted some form of comfort. Some escape from the pain. Much love to all of my cancer moms!