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 [...]
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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 [...] Near the end of preschool, we contacted the school district about creating a 504 plan* for Cookie. Some districts have a specific district coordinator that handles special needs evaluation, while in other districts, the job falls to the school counselor. The process takes about 3 months to complete. Here’s what we asked for and went [...] School started last week, and that meant a big load of new school supplies. Every year brings a new challenge. Our oldest, Cookie, will be writing a lot more now that he is in 4th grade. He also has a 3-ring binder and graph paper on his list. Art projects are getting more complex, too. [...] I love Glad Cling Wrap. There’s a giant roll of it in our kitchen, of course. But there’s also a roll in my desk drawer at work and a roll on the floor by my nightstand. I love Glad Cling Wrap, not “Saran Wrap” or, perish the thought, some of those generic store brands. We [...] My name is Jennifer and I am currently a full time mom to 4 elementary-age kids. The youngest just started pre-K and the oldest is in 4th grade. All 3 boys have ichthyosis, while my daughter and I are not affected. Rachel’s job has always required me to manage most of the kids’ care. I [...] Hi, I’m Rachel, and I have ichthyosis. I’m lucky in that many of the people I meet on a daily basis don’t know it. There are other forms of ichthyosis which are a lot more severe than the type I have, and some of those symptoms make it very obvious to passers-by that there is [...] |
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