new shoes and more sleep


New shoes.

First time for Rachel.

Even without her AFOs (splints), we had been unable to find a solid shoe to fit her foot.  She does not bear weight independently on her feet, but she does go into her standing frame at school (and at home during the summer).

Having a pair of shoes creates a sense of normality for her, never mind the fact that she now has decent foot covering in the rain and snow.

In the past, when I would take her to a shoe store for a fitting, the staff would oblige my request but I felt as if we were a burden to them.  We eventually gave up because we were told that unless we chose a custom made shoe, we would have to stick with a slipper.

Recently, we were directed to try One Small Step, a small shoe store in Hamilton.  When the owner offered to help by coming into our van - instead of Rachel coming into his store, I knew we found the right place.  He sells shoes for all kids, but he has compassion for children who have hard-to-fit feet and need something to accommodate the AFOs.



I only wish I would have taken a photo of Rachel's face when the man stepped into the Sprinter to measure and work with her feet.  It was a funny expression.

Speaking of expressions, this is Rachel's latest whenever I try to catch a photo of her.


* * *

Both Rachel and Janneke are showing more interest in cause/effect buttons and with a few different iPad apps.  We hope this will progress into some basic forms of communication that we can use at home, as well as school.


While the girls are busy learning buttons and tactile exercises, we are exploring a slightly different formula recipe that can extend the girls' night feeds.

To keep the long story short, ordinarily the hang time for formula in a feed pump is four hours - any longer creates potential for bacteria to grow, formula to go sour, etc.  The girls are fed 24 hours, so that means we are changing, cleaning, and prepping the feeds every four hours, day and night.

Up until this point, we haven't had longer night feeds because both Rachel and Janneke have sensitive stomach/bowels.

It's been about two weeks of a longer overnight hang time with the updated changes.  The girls are still awake periodically and require bib, diaper, or bed changes, but knowing we don't have to be up to do the feed change and prep every four hours is liberating.  It's quite amazing how significant a slightly longer stretch of sleep can affect your emotional well-being.

Peace (and sleep),
spot