Hello wonderful (hopefully!) World

Hello everyone! First allow me to introduce myself, my name is Liana . I’m Chayton’s mom and the main person to write/run this site. I am also mom to two wonderful girls and partner to my fiance Justin. Rayne is 10 and Dyani  is 2 1/2.

 

I am starting this site/blog to share all our experiences with chayton with the rest of the world.

Here comes the fun part now, explaining chaytons diagnosis. Our son has lobar holoprosencephaly also known as HPE.  I’m including a Link on here of the scientific definition but it basically means our sons brain formed incorrectly. He is missing white matter in his brain so the left and right hemispheres are not completely separated

He also on top of lobar HPE has seizure disorder, gastro issues, sensory issues, pica, muscle weakness on lower body and left side, inner cleft pallet, underdeveloped/blind in one eye, scoliosis, auditory sensitivity, light sensitivity, equilibrium and gait off, self harm, non verbal, memory issues, severe migraine and CP.

The list of disorders and issues i put above were just updated as of our last hospital visit. So to put that Chayton is disabled would at this point be putting it mildly. We love him but as you can imagine it is frustrating to be told over and over again by specialists and some of the best doctors in the US that they don’t know what is happening with him. I finally said I was done with it. I was done hearing we don’t know what to do, your son doesn’t qualify because we don’t know what he has or understand it. I was going to have to educate people about him while we fight for him.

I wont keep rambling on. there will be many more posts to come!