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Friday, August 31, 2012

Drawing Time

Kenan Gets Drawing Time: Kenan suffered optic atrophy many months ago, but there is more to drawing then seeing. Markers, crayons, pastels and pencils all have different sounds, different smells, different textures and feel very different making marks on the paper.

Ice Cream Sundae

We celebrated Tamsen's 4th Birthday with an ice cream social. This is Kenan's version of a hot fudge sundae: partially melted ice cream, thinned hot fudge and maraschino cherry juice, 8/26/12.

We Love Summer Series

We Lover Summer #9: Millennium Park -Chicago, 8/18/12. 

Even before having kids I admired Jaume Plensa's Crown Fountain for the immediate access it offers special needs children. In addition, the Air  Show was taking place up above. Kenan took it all in with his usual alertness.

We Love Summer Series

We Love Summer #8:  Hot Sun, Cool Air, Lakeside Napping, 8/11/12.

Saturday, August 11, 2012

New Sharon, Maine

Kenan makes his float debut on the East Coast (far left). Thank you to Jamie Davis and her beautiful daughter Addilyn (second from right, Krabbe diagnosed at 6 months, now 11-months-old) for raising awareness and advocating for expanded new born screening in Maine.

Wednesday, August 8, 2012

We Love Summer Series

            We Love Summer #7: The Hunter's Hope Family Symposium

After a long day of informative lectures on new born screening and Krabbe research, Kenan and I found a babbling brook to listen to on the grounds of the Holiday Valley Resort, NY. Although he lost his vision at 12 months, this photo distinctly portrays his receptive listening abilities and how attuned he is to his environment.