Wednesday, January 27, 2010

Forks and Spoons

So for months now I have been trying to teach Myles to eat with a fork or spoon. Some days are better than others, some foods easier of coarse. He can get mashed potatoes on the spoon and in his mouth at least 1/2 the time. We're still trying to come up with some sort of workable plan for potty training. I don't really want to do diapers for years and from what I have read and been told that happens a lot with children who are severely visually impaired. We're trying to figure out a way to incorporate lights and sound but I am still at a loss as far as actually making a plan.

Myles won't wear his glasses at all now so I don't know if that means they are no longer helping or if it is just a two year old thing. He keeps breaking them and I can't even keep them on long enough to read a book to him. So his vision may be declining. His nystagmus is worse lately and I am having to remind him more and more to use his eyes too, not just his hands. When he does actually look at something he puts it very close to his eyes and says "hmmm"or"ohhhh" so , he still sees something.

We are working on Braille readiness. So we are trying to learn top, bottom, and sides, and to run his hand from left to right across the page. He loves the feel of paper, thank goodness. My son and daughter both have sensory issues with paper and I was worried that he would too. We have been encouraging him to touch it and play with it since he was 8 months old so maybe that has paid off. He still hates the feel of sand, rice, coffee grounds and grits. So I am temporarily out of ideas for the sand table play. We are supposed to hide things in one of these boxes of sand, rice, grits or coffee grounds and let him "discover them". He just refuses to put his hands in it. He will stick in one finger then pull it out and wipe it on his shirt repeatedly. As with most two year olds the things I want him to touch and play with he won't and the things I don't want him to touch and play with he goes back to constantly. The joys of the terrible twos!

Saturday, January 16, 2010


We heard from the doctor from Emory yesterday. Unfortunately Myles does not qualify for the Gene Therapy that we had been hoping for. They said that the reason the testing is taking so long is because the mutation he has is more rare than we had imagined. Apparently they don't know much about this one and we will have to wait until they are able to complete a full breakdown of his genetic profile to find out what the other effects of the mutations will be. So it is news and no news at the same time. More waiting, more wondering, more confusion and the only new information really is that he does not qualify for the surgery that might have helped him to see. And so we keep waiting...
...and praying, and doing what we can through diet and therapy.

Sunday, January 3, 2010

Still waiting

We are still waiting for genetic testing to come back. I has been about 9 months, I think. Myles has not been doing great on his diet over the holidays. Well that's what New Year's Resolutions are for!