Now that the kids are all school-aged, slow-moving baby bikes have gone by the wayside. Just because they have ichthyosis doesn’t mean they don’t have typical kid desires. It has been a challenge to strike the balance between keeping them safe and letting them do things with their peers. One point of conflict has been [...]
Today, our friend Toni joins us to tell us about her first time using the Dremel. We met Toni when we opened ourselves up for questions during our Ask Me Anything session on Reddit back in April. Toni has a form of palmoplantar keratoderma. ————————————————————————– I’m Toni, and I I’m the fourth of five affected [...]
It’s that time again – school is coming! Our kids don’t start until September, but many districts start in mid to late August.
I got all our supply shopping done earlier this month and spent an afternoon helping the kids sharpen 120 pencils and take all the packaging and stickers and tags off of their [...]
My feet did a good job of throwing a wrench into part of our weekend plans. We were planning on trying to do some tourist-y stuff in the DC area on Sunday, and I had vague aspirations to do better than our Cherry Blossom Death March a couple of months ago. But this time, we [...]
Megan has started blogging and her first post, Me Against the World, and by World, I Mean Doorknobs, is an awesome piece of writing. Check it out if you haven’t seen it already. (I’ll wait. )
I’ve blogged about my pickle jar fight but I haven’t really gone into more detail about my own dexterity [...]
On one of the more active Facebook groups this weekend, one of our friends asked about the difference between ice-pack and phase-change cooling vests. We think we covered most of the answers in our post a few weeks ago on the different types of cooling vests.
As Jennifer explained on Facebook, in the ice-pack / [...]
By now, over 270,000 people have seen a picture of Rachel’s foot, thanks to our question and answer session on Reddit three weeks ago. Much less visible was this other photo back around Halloween night. If you compare the two photos, you might notice that the thickness of the skin appears very different between the [...]
Summer is heading towards us in the Northern hemisphere. Some parts of the country are still enjoying (or not) snow, while down here in Virginia we have lovely 60-70 degree days with a lot of rain. But soon will come summer, and with it lots of 90+ days. Many kids with ichthyosis contend with thickened [...]
Jennifer recently asserted on Facebook that my “idea of cooking is a frozen pot pie”. I can’t argue too strongly with that on most days, although my culinary skills really do go beyond button-pushing on the microwave oven. Honest!
A couple of nights ago, I broiled some hamburgers in the oven. Opening the package of [...]
Our guest post today is by Shannon, mom to Lauren. Lauren is 8 years old and a Brownie Girl Scout. ————– “If there were no schools to take the children away from home part of the time, the insane asylums would be filled with mothers.” – Edgar W. Howe
After three years of Early Intervention [...]