still waiting and wondering

We're calling her Dora - with her backpack, she can explore and be fed at the same time.

Truthfully, she is not well yet.  It was a long week, ending with another visit to Mac on Friday.  From 1 to 5:30 that afternoon, I worked with the endocrine staff to understand some of her unusual symptoms - petechial rash and low platelets.  My mom-sensors tell me they are most likely side effects of the Diazoxide, so they consented to a lower dose.  The staff considered admitting her again, but I was relieved to take her home again that evening.

Honestly, I don't know if I want her on the med at all, and seeing side effects makes me even less confident.  But, we don't have much else to control her insulin and sugar levels at this point, so the med stays.  Hopefully a lower dosage will mean she can return to her old self again.

It was reassuring to talk things through with my sister Jess who is only too aware of blood work results and platelet levels because of Caleb's journey with leukemia.  Perhaps that's another example of disguised grace - how her journey can give comfort to me in mine.

As it is for now, Janneke naps a lot.  She has times when she is awake and around the house, but I am surprised by how quickly she tires.  We will wait and see how this week goes.

I find it interesting the parallel between the weather this winter and my perspective - how quickly both change overnight.  

One day it is snowing and cold, and the next, the girls are mucking in the mud....


I suppose it's about finding balance, in spite of the circumstance.  

On a different note, the wheelchair lift and parts are now installed in the van (Everyone's Van!), and we have practiced putting the chairs in.  The first time we tried the lift at home, we parked the van in the driveway (as usual), but when we operated the lift, it popped out into the flowerbed, narrowly missing our light post.  

I think when we make our home more accessible this spring, I'm going to ask the guys to paint lines on our driveway - or even words like PARK HERE, SARA, so I don't end up wheeling the girls through our hostas.  

Thanks again for your encouragement and support - and for the meals (what a treat!).  Funny how other people can get my kids to eat vegetables with no difficulty.  I've decided that future meals will be entitled "Mrs. Vlaar's" or "Mrs. Hoff's", etc, to prevent any discussion over eating and picking.  

Peace for your week.

Oh... by the way, we posted a link on Facebook to this thought-provoking article written by a father whose child lives with Down Syndrome.  It is a interesting article - one worth reading and worth discussing.  Click here.