We have had a lot of tornado weather in our area…. it's that time of the year. Kaylie has done very well, with it all. She hasn't had any headaches with any of the big storms… its only happens when we have a big front come through…. like it goes from hot to cold, dropping about 20 degrees.
Storm wise, we had a little damage…. nothing too big, a tree landed on one side of our home, but it is very minor damage compared to what could have happened.
In early June Kaylie will be seeing a Rheumatology doctor at Dallas Children's.
As for the family, we are all doing well, looking forward to the summer and nice weather. We have planted a vegetable garden recently, and the kids are really enjoying that… so far just planting seeds, and watching the sprouts pop up.
Myself as a parent, caregiver, and advocate…. I have really become distant from a lot of things…. A lot of emotions have gone about…. I'm not sure if that's b/c I'm realizing that this is a never-ending journey… which I have always "known" that…. or having Kaylie home day in and out, all the homework, PT, doctor appoints here and there….. I'm just physically drained. With having time to myself recently and just to focus on our family… its kind of had me do a lot of thinking.
The other night, Dateline was on…. it was on Tom Brokaw's journey with cancer. And all though it was about cancer…. it told our story. Trying to get our heads around pain levels, finding the right doctors, even if that means traveling, how you feel your life has done a 180, how as a caregiver…. I'm at my breaking point right now. It was an amazing episode, and if you missed it… I highly suggest you watch it…. you don't have to have cancer…. but you will relate to hit if you or a loved one has a chronic illness. Dateline Episode.