Wednesday, July 17, 2013

The island is spinning, again.

Tonight im up late thinking about all the progress my cutie pie jojo has made. In the craziness of it all I sometimes forget what he has done.  The words blurted out without prompting,  puzzles completed,  eating with a utensil 50 percent of the time, and the amazing feeling of his eyes meeting with mine. Now thats the best!  A year ago he wouldnt look at you if you begged! 

The hard part is that while he did does accomplish daily goals he often (mostly) does the said task just once. I might hear a word on a tuesday and never hear it again for months...he is spinning and stimming alot lately. He is definitely bothered by something. Figuring it out is the worst. I start with reflux treatment and if that doesnt help I move on to his tummy. And then assume it must be pain. I do a warm bath and massage. Its a 50/50 shot In the dark.

My heart is heavy with so much uncertainty. Its been a hard few days. I have this awful anxiety about the chromosome 6 disorder. Its not the type of  disorder that comes with a prognosis. It comes with a bunch of  "we dont know"  wait and see and check all systems and hope and pray for the best. Tomorrow is the last of the *checks* we see a pediatric cardiologist to check his heart.  We have had so many test and appts this summer its unreal. With each test comes the reality that my boy has a long road ahead of him.  He is almost 3 and I want to hear his voice. I want to communicate with him to ease the frustration we all feel.

Here's to a great Dr that can deal with jojo and his sensory issues and get us a clean heart report. Love you jojo, I will always be your biggest fan and Goooo Team Jojo!!

*today a chromosome 6 lil girl from the group I belong to went to be with her heavenly father. May she rest in love and her family be at peace. ♥♥