Journal

Monday, January 27, 2020 4:20 PM CST

With Colton's FB site I don't update here too much. Nevertheless, here is the update I posted on FB:

Next month and in the following months Colton will be going to doctors. getting genetic testing, etc. He has been experiencing some neurological symptoms and we need to rule out Refsum, NARP Syndrome, etc. He has had neuropathy in this extremities "for as long as I can remember" he just told me last week. He stated he thought it was normal. :-( Poor kid can't catch a break. I love him and even though I am sick myself, I will do everything in my power to make sure his life is the best it can be. Prayers welcome.

Colton will be 23 next month, so we have had this Caringbridge page about 17 years now. How time flies. He has a girlfriend who lives about an hour north of us. He takes the train every couple weeks to visit her. Sometimes she drives down to see him. In the back of my mind I have always feared my son would have some other funky RP related disease- and that he would not only suffer blindness but other issues as well. Early in his life I mentioned to the doctors how he would "stem" with his hands. They all said it was just because he was blind and that was how he compensated for the loss in vision. At every UCLA appointment I advocated for genetic testing, only to be told it didn't really matter because there was no cure yet. Well... he is going to get genetic testing now. Both Refsum disease as well as NARP syndrome are definitely life altering diseases and can shorten life span as well.

What can I say? I am broken-hearted.

Hoping it is something else... diabetes.. scoliosis. Anything but another serious disease.

Bronson is doing well. I think I mentioned he got married to Kim on December 27, 2018. They live near us. I try to stay focused on the positive but it isn't easy- esp right now. I will be 57 this summer - and although I could retire early on medical retirement, I have to work another 2 years to get "vested" so I can keep health insurance until Medi Cal kicks in at age 65. So... though I feel lousy and am always in pain myself, I go to work M-F.

I will update again this summer or perhaps earlier, after we know what is going on with my son.

Thanks for checking in. Please send me an email if you need to message me because I do not check this page too often.

Love, Laura