Better Late than never...
Kimberly & Mark parents of Sophia, Harrison and Evan
18 month old Evan has palmar plantar EHK
Evan has been making wonderful strides since Thanksgiving, literally. He started walking. His team of "ists" (speech, OT, PT, derm, ped) are happy with his progress and he seems much more content with his new found independence. He's in the 30th percentile for height and 5th for weight. I do not have any current photos or I would post them. His skin is well his skin. It is thick, blistered and often painful, but to everyone's awe, he continues to shine. We are going to sign him up for a toddler gymnastics/movement class this spring.
Mom and Dad are doing OK to good on most days. Having a child with special health needs can really take it out of you. He doesn't sleep well and EHK aside, Evan has a strong personality (don't most toddlers??!!). EHK has simply become part of the family routine, just get it all done and get on with the day. I have begun working more which has been wonderful for me. I am a freelance food writer/recipe developer and getting back into the kitchen has been so excellent, plus the little bit of extra money is great too!
What's one tip on skincare you would recommend that people DIDN'T try that you have? Evan's routine is pretty basic. We haven't varied all that much. Aquaphor on hands, feet and face. Lotion everywhere else.
What's one tip you'd definately recommend for skincare? We still medicate Evan during his morning "treatment." This is atypical with ichthyosis but it has worked famously in this family. Bleach in the daily bath water and socks over his hands to let the aquaphor soak in.
We have two favorite new items in the household: a set of aquadrums that float in the bath tub. I'd suggets googling aqua drums to find some and basic brilliance cotton clothes (www.basicbrilliance.com
). This company makes 100% long sleeve onsies with no snaps and cut toddler caps. They come in fun bright colors. Prices are not over the top but they are not cheap either.
I love this board and our community. It gives me comfort, hope, support and strength.
Have a wonderful day everyone!