Saturday, June 22, 2019
I've been struggling guys. I'm not sure we have been properly armed. For my kids' ENTIRE LIVES...we have been seen by Children's Hospital. Even the kids without Neurofibromatosis. It was out one-stop-shop. We felt safe there....and all of our issues for the most part were addressed, in some form.
But now...Bailey is 23, Braden is 21...And basically we are being told 'Good Luck' and pointed to directions that aren't as helpful.
I, myself don't have an 'NF DR." No one sees me specifically for the symptoms of Neurofibromatosis....Same goes for my adult children.
I wish there was a proper transition -
What are we supposed to do....?
Lately, Bailey has been complaining of headaches....Like call-in-sick-to-work headaches. And I struggle with how serious to take it. On one hand, it could be something serious...Like her tumors are starting to grow...or a new tumor....or any number of things....But on the other hand...she has been stable for so long...maybe it's nothing...!?
Parents of adults with medical needs....How do you do it..? How serious do you take things...? How serious do doctors take things..?
I, like you am just trying to figure things out as I go...And HOPEFULLY get some answers along the way.
Kinda Frustrated here...
LMK If what you guys do for your adult children...I'd love to hear some ideas!