Back to my "Job" after Vacation
We managed to get to my parents place in Bonita Springs with the two little kids for a break from all the chaos. Better said, a break from the medical chaos, as the kid chaos never goes away. In fact I’m convinced the kid chaos doubles the second a family walks onto an airplane. That being said, I loved seeing my kids be happy in the pool under the warm sunshine and playing with their Minnie and Papa. Even more I loved being able to have a daily standing tee time to get away and golf with my hubby under that same warm sunshine.
Today I spent the better part of the day doing my “job” which is more than being Caleb’s mom, it’s being Caleb’s advocate. We are still working out a bus aide to help get Caleb to school so I was able to ride the bus with him today. I love watching him wait out the window for the bus while telling Duncan over and over “you can’t go to school, you’re too little.”
I sat down to organize my Caleb To Do’s for the day and felt so happy about my never ending list. Not because I want more to do but because it feels so right doing what I’m doing each and every day. There is a great amount of satisfaction in knowing that as I cross thing off my To Do’s, I’m helping my sweet baby Caleb live the happiest and fullest life that he can. So today my To Do list was the following:
Send all of Caleb’s doctors to his special education teachers.
Have a meeting with Caleb’s special ed teacher and his Social Worker to talk through an Emergency Plan and transportation support.
Buy a pulse oximeter to keep in Caleb’s backpack to help all people that care for Caleb detect if he is having a heart episode. The device we as parents use to detect a heart episode to be explained in a future post.
Research TEFRA.
Call ARC advocate to help navigate TEFRA.
Call Neuropsychology at Gillette in order get status on scheduling an appointment. I am told it is hung up in prior auth at my insurance.
Call my insurance to see why prior authorization is hung up only to be told they have not received a prior auth request.
The above two resulted in some coordination with specialists and insurance. I now am told (again) this will be filled out and someone will call me in about 10 business days (which I was told 10 days ago).
Call Hematology to see if any cancellations have come through to get Caleb in sooner for testing of blood clotting disorders.
Research Caleb’s newly appointed doctors (Hematology, Neuropsychology and PM&R).
Go to yoga (I seriously consider this part of my To Do’s to help keep my sanity).
It didn’t all get done, but I did the best I could in the time I had.
I dedicated my yoga practice to Caleb’s physicians, providers and supporters today. Dan and I pray every night for the same thing, but I find peace in being able to dedicate a complete hour to the people that have Caleb’s life in their hands.
Thanks for the prayers and support. The outreach that we have experienced has been touching and comforting. No matter what happens in our sweet baby Caleb’s life, we know we have a support system that will keep him strong.
Below are some additional pictures from our trip to Florida.
