Tuesday, May 31, 2011

soft feet


I call her "Velvet Feet" sometimes. Other times, it's Ray-Ray or Ray of Sunshine. Tonight, Rachel and I chilled on the front deck after supper - me with my coffee and Rachel with her feed pump. (Janneke was napping, and Ralph was with Em and Soph.) Rachel's feet are truly soft and velvet-smooth. A bit bittersweet: Her feet are so soft because she doesn't bear weight.

Her AFOs (UFOs? see a previous post) are not the right fit, so we are back to the drawing board with casting and new footwear. Unfortunately, that means any foot range we gained with the serial casting has probably gone away. We hope she will regain more flexibility and range with the new plan.

It was a hot day today over here in Niagara. Wow. Hard to believe it was so cold not too long ago. These seasons keep life interesting, eh?

Tonight, the four girls enjoyed some time together on the swings. It was one of those 30 minute blocks of time that I wish would last so much longer. Em and Soph filled my ear with stories from school and questions about the plants in our flower beds (I'm clueless!). Rachel and Janneke loved the swinging movement while listening to their sisters' chatter.


Soph wanted to climb the "banana" tree. I have no idea what this tree is called. I'll have to ask Paul DeVries the next time he stops in. The flowers look like little bananas before they completely open. That's the extent of my horticultural expertise.




This week includes a meeting with the dietician and a visit to the paediatrician at Mac. So far, all of our appointments have been continued assessment and follow-up, nothing of great concern. I have noticed that Janneke has more reflux in the morning, but that might be solved with a simple med adjustment.

Soon, there will be a photo story on the AppealforWheels website; the photos that Elma took (and a few more yet to be taken) will be compiled into a video that will tell our story.

Here is another shot from our session. Janneke typically falls asleep in this fashion, with her hands grasped tightly together and high in the air.


We are thankful that things continue to go well here at home this week. I wouldn't mind a bit more sleep and less laundry, but there is so much to be thankful for that the little issues stay little. I feel as though we are slowly entering a chronic care routine, a normalcy that includes predictable behaviours and schedules. I only dare myself to consider the future once in awhile. Sometimes, those moments come when I am answering questions about the need for a wheelchair accessible van when our girls are so little.

But, we trust that we will continue to be cared for - come chronic or acute circumstance. He holds us in the palm of His hand.

Have a good couple of days. Tomorrow is June!

Peace.
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4 comments:

MM said...

I was admiring both girls' feet in church on Sunday -- they just looked so soft and kissable :)

Thanks for sharing so much of your lives with the rest of us. I learn so much from you.

MM

Anonymous said...

I THINK it's called a Golden Chain tree. I was admiring it the other day as I walked with the boys to school. :)

~Andrea W.

Marilyn said...

I like to think that Janneke is hold her heavenly Father's hand as she drafts off to sleep.

Williams Family Blog said...

Sara, Who takes all the photos for your blog, they are amazing. I love reading your blog and keeping up to date with the family. Tell Janneke that Kira prefers to fall asleep with one arm in the air.

Happy june!

Cousins kckkc Williams