tag:blogger.com,1999:blog-6203178996480372649.post4456676961152230078..comments2014-02-23T08:48:01.127-08:00Comments on Myles and the Mighty Omegas: Forks and Spoonsk.h.whitakerhttp://www.blogger.com/profile/04987337506335691981noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-6203178996480372649.post-69191354089294233562010-01-30T08:44:48.797-08:002010-01-30T08:44:48.797-08:00Bless you Susan, you are such a sweet angel and I ...Bless you Susan, you are such a sweet angel and I appreciate your support so much! I am going to try the cotton ball thing, I think that is a great idea! We go to CVI, which is the Center for the Visually Impaired and he has a great teacher there who is also visually impaired. We also have therapists who come to the house. If I can ever get him on SSI we can have more support but we've been turned down several times now. It is such a rare disorder there are no local support groups and the only person at CVI who has Leber's is an adult. Thanks for following this blog also. It means a lot to me.k.h.whitakerhttps://www.blogger.com/profile/04987337506335691981noreply@blogger.comtag:blogger.com,1999:blog-6203178996480372649.post-4067671954181213992010-01-29T21:10:12.668-08:002010-01-29T21:10:12.668-08:00Sorry I got the name of the condition wrong - lcaSorry I got the name of the condition wrong - lcaSusanhttps://www.blogger.com/profile/06279040381509033619noreply@blogger.comtag:blogger.com,1999:blog-6203178996480372649.post-77892542385874920302010-01-29T20:01:31.556-08:002010-01-29T20:01:31.556-08:00Hi Karen, I decided to follow your grandson's ...Hi Karen, I decided to follow your grandson's blog and keep in touch more. Your grandson is so precious and inspirational. You've also inspired me to create a personal blog of my own concerning my Mother. Not sure when I'll get it up and running, but I feel I the need for another outlet, and a lot more support than I'm getting and I hope to connect with people who may have similar issues. I've made some great blog friends though IF, so maybe I can gain some for this. Is there a support network for CVI anywhere near you? You are all in my prayers and I'm pulling for you! On another note, for the sand table, can you substitute something like a bunch of cotton balls or ripped up TP, and then move on to some coarser materials? Just a thought. Dear friends of ours have a son just six months younger than David(15 1/2) who has lots of issues: severe developmental delay, a condition similar to autism but they don't have a name for it, asthma, food and evironmental allergies, epilepsy, low muscle tone, hypoglycemia, and some kind of heart condition that isn't quite diagnosed yet. I think I covered everything. My friend finally got him completely potty trained at age ten. I bet Myles will make it long before that! Hang in there...Susanhttps://www.blogger.com/profile/06279040381509033619noreply@blogger.com