Sunday, August 12, 2012

Friday, August 10, 2012

Easy Peasy Cardio Day!

The shade from the playgrounds one little tree is a welcome blessing as the boys enjoy playground time at our children's hospital.

A sneaky game of Spies is taking place and I am revelling in the ease of a tear free Cardiology appointment. Our first ever!

Bup was a star during the Echo & ultrasound. Calm, agreeable and happy!!

The experience for W was beneficial as well. A little compassion for his brother, family involvement and even earned a paper airplane as well!

Even though there were moments when Bup was wiggly because his brother was tickling him, staff were still able to tell me that the rhabdomyomas have not changed.


Wednesday, August 8, 2012

A Tricky Brain

Last night as I was tucking R into bed, a seizure joined us.
"My hand is wiggly Mommy"
As he tried to lift his chubby arm to show me it flopped down and hit Jim in the cheek.
Thank heavens he giggled because inside I cringed and if he had showed concern, would have brought me to my knees.
Wiggly aaaand cracked R up!

Later though, after the stories had been read and the songs had been sung, while we were having a "snuggle",
A little voice spoke up and asked,
"Why do I have wiggly hands?"
"What's a seizure?"

We have always told R what those daily meds are for .

How does one explain seizures and Tuberous Sclerosis to a child, to a 5yr old?

What would you say?
I need a little help here.

My responses to Rs questions:
Why? I wish I knew.
You have a tricky brain that sometimes tricks your body into doing funny things, like the "wiggly hand seizure"

It doesn't seem like enough.

Which was even more obvious to me this morning, when R crawled into bed and his first question was, "Do you ever have a wiggly hand Mommy?"

Saturday, August 4, 2012

Hit the Road Jack

Our nomadic summer is coming to a close as we drive from one end of the province to the other.

A mere 11hrs with two boys & a dog. Hmmm..... Maybe one boy should kennel travel & Bensy could have a seat.

So far, there has been IPOD time, adventures in odyssey CDs, Robert munsch CDs, studying an angry birds coloring book ...... And begging for. McDonald s .

In a Mean Moms Rules moment, I denied the boys lunch as Subway was dissed while demanding McDs.
See, there is no Ronald's Rest. In the all town enroute, so they got.....

Kept driving.
Another 169 km.


Did I make my point?
Probably not.

And one more thing,
I'm hungry!!!