Monday, February 25, 2013

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

5 comments:

Melissa DeVries said...

Thank you for your encouraging updates. I am so thankful for people like that man that was willing to measure Rachel's feet while staying in the Sprinter. Most people don't understand how thoughtful and helpful such a simple action can mean!! I am also so glad that you can have the opportunity for a little bit of a longer stretch of sleep at night, that is so important for you to have, yet often can take the least priority. Thank the Lord for these small blessings.

Anonymous said...

I am deeply moved by this post. Shoes. So simple, so ordinary, so important. It seems to me there is something profoundly biblical about this story, and I pray for a blessing on this good shopkeeper, and your dear family.

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SVandriel said...

Hi Sara, it's Sonya from the parent group at NPCC (your long lost Van Driel relative! ha ha) I am so happy to hear that you have a bit longer stretch b/w feeds! I haven't read past here to hear how it's going, hopefully better. I meant to ask you about your night routine, just out of curiousity. I remember coming home from the hospital with Dylan and the dietician telling me that's its okay to hang the bag overnight so that parents can get sleep. I remember being horrified and convinced you can't go past the 4 hour mark! his formula said "discard after 2 hours" at the hospital for pete's sake! but now I laugh at that, and myself, I hang Dylan's formula at 10pm and leave it til b/w 7-8 am! during the day I change it every 2-3 hours, that makes a lot of sense doesn't it?... I used to have your night routine, when Dylan was on bolus feeds every 4hrs around the clock! I can sympathize with your exhaustion to a certain degree. anyways, I didn't mean to go on and on like this, sorry! It was so nice to meet you and Ralph for the very first time and have things in common (including family!) take care

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