As I prepare the girls for bed tonight, I laugh because Rachel and Janneke are still awake. Seems whenever I choose the cd "Romancing the Screen" -classical dollar store music which I think still sounds like lullabies, they stay awake. All other classical stuff they sleep right through.
They also make me laugh when they randomly touch each other on the hand or foot.
Looking back on the last ten days, sometimes my words get ahead of me, and I have to swallow them several times. The part about surrendering my plans and my ideas for how things should go. Even in the daily stuff.
It seems all four girls have been fighting something in this house. Both Rachel and Janneke had pink eye and some strange high fever. We thought Rachel's pink eye had cleared, but it reappeared, so we are on to different drops. Janneke is doing well, but now Em and Soph are battling strep throat- along with their mom. I don't like setting aside my plans to be sick and take care of sick kids.
I am thankful the nurses have still been coming to the home to help me out. (They do have the option of not coming when there is something contagious in the home.) The PSW cannot come until we are germ-free, so that makes for more work in the afternoons.
But, really, in the grand scheme of things, this too shall pass. So I will drink cold coffee for a few days to avoid the feeling of swallowing anything hot. And I do get to spend quiet time (reading Gordon Korman to them now) with my four girls. I just hope this virus or bacteria only affects females - I don't want Ralph to get sick.
Being sick on the couch is gets old quickly.
I splurged for two puzzle books while picking up meds.
In the middle of all of this, Rachel finished her preschool therapy program. She was not able to attend any of the program this week, so we unofficially finished last week, I guess. I wondered how I would explain this to my cognitively-delayed daughter, but she seems quite content to have more mom and big-sister time.
Her pink eye makes her glance look almost sneaky in this photo!
Look who is sitting without falling right away.
Rachel was well enough today to spend some time with her dad at the Holland-Bloorview Kids Rehabilitation Hospital, where they met with the saliva management team. Sounds impressive, but the summary: a lot of driving for a short conference. Though they raised their eyebrows at the amount of bibs we launder daily, they had the same three options McMaster had for us:
*Botox treatments that last three months and require general anesthetic
(of which she did not handle well the last time -see June 2010 posts)
*Surgery - for which she is too young yet
*Medications - with multiple side effects, given her condition
So, we'll sit on the decision for a while... and keep washing bibs. We are noticing more difficulty with their saliva management, so our paediatrician recommended Atrivent (a different puffer). We'll try the new ideas one at a time.
I guess we are learning that no one has really great answers to our questions regarding Rachel and Janneke's health. We have moved on into a chronic phase, as our GI doc says, where we will see doctors maybe every six months to once a year. The girls' care plan won't be quite so dramatic as the first three years of their life.
That sounds okay to me.
But, I also know that just when I think I've got things figured out or planned, life takes a turn.
So, I'll try to be patient as God shows us His plan.
In the meantime, I've got some salt and vinegar chips to share with Ralph tonight.
Peace for your week.