Here's just one of our wild adventures from last week: On Thursday I took Sadie out of school early to go to the Opthamologist. On my way to the appointment we dropped Kiersten off at her Spanish class and headed back to the freeway. The road was pretty empty and I was going through a light. Out of nowhere a couple teenage boys (who were most likely more interested in their loud music instead of following the road signs) turned into me. I have no idea how we escaped an accident, I actually had to stick my head out the window to check to see if they hit us! Anyway, even though they did not hit us Sadie was thrown around a little in her carseat. She started screaming and complaining about her head. We drove straight to the Dr. and while trying to get to his waiting room she wanted to get down and walk up the steps. She looked like a drunk sailor... she couldn't walk up the steps and had a hard time controlling her legs. The Dr. evaluated her for any neurological injuries and it was decided that she had reverse whiplash.
After getting her first prescription for glasses :) we picked up Kiersten and drove home. Sadie blessed us with crying and complaining again the whole way home (not usual). Minutes after I arrived home her pediatrician called and told me her xrays taken on Monday showed some instability of her neck (AAI) and said she would need an MRI right away to measure more accurately. I shared our "near miss" with the Dr. and she ordered an MRI for that night--- without sedation! Needless to say, that was a disaster and we had to reschedule the sedated MRI for the following Tuesday. Until we knew more about the degree of instability she would be on limited physical activity. First words out of the Dr's mouth, "NO BOUNCE HOUSES". What??? This is Sadie we are talking about. The girl who talks daily of her bounce house party (last June) and who rolls around the floor doing her own lyrical solos :) limited activity is not something I would welcome with this little girl!
Let me give you a little background on the whole AAI thing. Kids with Down Syndrome often have problems with their loose ligaments and AAI is actually somewhat common (10-30%) with only 1% being symptomatic. Unless the space is big enough or unless they are symptomatic the usual course of treatment is monitoring and limited activity. If there is a chance of spinal cord compression or nerve damage they will fuse the spine together with metal coverings that are bolted in the spine. Sadie has actually hurt her neck several times in the last six months and although we were following up with some regular screening... we were worried about AAI because of her ???symptoms???. So, I was a basketcase. On the good end... she would have limited activity--- on the severe end... she would have major surgery. CRAP!!
I hate this part of down syndrome. The part that you are always ruling out or treating the MANY possible diseases, disorders, conditions, etc. that come with the extra chromosome. I hate the "time bomb" that I am always worried will go off!
That's when I found this website. http://www.elizaswish.org/ about a sweet little girl, Eliza, and her beautiful family. Eliza's body is rapidly deteriorating. She is blind, can not eat, doesn't have any control of her muscles.... she is trapped in her body. As I looked through her website I didn't see her family getting ready to scream and cry because they don't have control of their daughters health. I didn't see pity and frustration. I didn't see them consumed with all the worries of tomorrow.... I'm sure there are many tears shed and sad moments.... but their website was full of sweet stories that showed me they were living for today! Their family spends today celebrating and enjoying their time with their sweet little girl. They read to her, sing to her, and enjoy reading about how Eliza inspires others to serve.
The night before Sadie's MRI, while reading through Eliza's Blog, I was reminded to put aside tomorrow's worries and enjoy today! Down Syndrome is like a grab bag of medical surprises. Sadie will always have routine screenings and countless Dr. appointments. I can't promise that I won't be worried; but I hope I will put things into perspective. I will try to live life like Eliza's family.... enjoy today and not fill my mind or thoughts with worries about tomorrow!
P.S. Sadie's MRI came back good... she only has mild AAI and will have to have xrays every two to three years. That means no diving, no tackle football, and no gymnastics. I am happy to report that Sadie will still be able to enjoy jump houses (by herself)!!!