Thursday, October 15, 2015

Although I'm seeking answers for David's current choking issues the only information that's been made clear is that we need to start finding new providers for David. I guess there was a recent policy change that is no longer allowing pediatric doctors to cover their patients with special needs until 21, they are now having to transfer to a don't care by the age 19.  This is the very reason I feared his transition to adulthood. iwe found to a great area that doesn't have individualized program.  We are being thrown into a whole new world that is unknown to us.  We are going to be forced to navigate through world that isn't necessarily designed for us, a world that can't accommodate David needs. Although David is an adult, he is mentally a toddler, and physically a teenager. I can't imagine him no longer being allowed to be treated in the pediatric facilities that have been such a comfort to us through out our medical challenges. I guess this is just part of our new world that I  have to get used to.


His neurosurgeon informed us on our last visit that he would no longer get paid for treating David. He even fought to keep him because of how complicated David and his surgeries have been. The only time David had surgery performed by a surgeon who did not know him (only because it was an emergency surgery and his neurosurgeon was out of town) the doctor cut open David's stomach looking for a tube that was still in his head and then sewed up his head leaving a broken shunt in it. It was an extremely traumatic experience that gives me tremendous anxiety about having to trust someone new with my babies brain. I thought this might only apply to specialist, but today at his appointment with his Pediatrician (his Pediatrician since birth) she recommended we start looking for a new provider since she can no longer see him once he turns 19. I have gotten pretty good at adjusting to change, but not when it comes to David's complicated medical issues.

Starting over after it took me 18 years to learn how to navigate through the pediatric system is very overwhelming. I know will get through it, I just need to pray my anxieties away.

Monday, October 5, 2015






When things fall out of place it is often so that better things can fall into place. Our last vacation was incredible but there were some unfortunate mishaps with the airlines that made our trip home very challenging. In the moment I was irritated and over whelmed but as a result of those mishaps David and I were given travel vouchers which made it affordable for me to plan another adventure with him.  All the mishaps and overtime paid off because David and I are Enjoying a much needed break while bonding in Hawaii!