Thursday, December 9, 2010

sleep study update


In the bleak midwinter
Frosty wind made moan
Earth stood hard as iron
Water like a stone;
Snow had fallen, snow on snow
Snow on snow,
In the bleak midwinter,
Long ago.

C. Rossetti



This week, Rachel and I made a trip to SickKids in Toronto. SickKids is an architectural delight for all who enter the atrium. Yet, the whole place hosts a myriad of emotions. And a myriad of faces. So many people visit this place daily for all kinds of reasons. Obviously, each time we visit, we remember those distant days in the NICU with Janneke, reeling still from the shock of her unexpected presentation at birth. The building reminds us of some incredible highs and lows with our Janneke -and other babies we loved and prayed for.


And speaking of highs and lows, this is a photo of the elevators (the yellow boxes) in the atrium, the part that Emily and Sophia enjoy. I respect those who made the decisions to make a hospital adventurous to the children who visit. So much to see, one almost forgets the reality of the building and the necessity of its specialities.

We were there to see the sleep clinic team, as a follow up from Rachel's sleep study back in October. As we already suspected, Rachel does have moderate obstructed sleep apnea. What we need to understand is the cause of the OSA. A CPAP machine won't work for Rachel since she is an excessive drooler. The mask would only cause her to aspirate. So, next week, when we visit with the paediatrician at Mac, we have several things to figure out - more visits to ENT and a referral to the drool doctor at Bloorview's children's treatment center.

What I found interesting is that Rachel was very serious during the entire appointment. Normally, Rachel is full of smiles and wins hearts very quickly. I had this gut feeling that she knew she was in a hospital and wasn't happy. After our appointment, I grabbed a sandwich while she watched the fountain. I told her we were going home, and then she gave me a small smile.


Am I making this response up? I don't think so. I don't give her enough credit at times for what she may be understanding but can't say. Ever since our scare in the PCCU with the MRI back in June, I feel like she is aware of what can happen at a hospital.

In the meantime, Janneke continues to move around in her walker at home, getting stuck under the Christmas tree and lost in corners of the bedrooms. It is amazing how she can maneuver backwards!

Here is a photo of her in the Snoezelen room at the centre. She loved the experience, and she loves to explore new things with her hands - a definite step forward in developmental progress.


We move into another weekend tomorrow. We hope our friends and family in the London area have started digging out of Snowmageddon! I must admit, I love a good snowfall, but having two kids who don't play in the piles and who need shoveled walks makes me thankful for the "tropics" of Niagara.

Peace.

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5 comments:

Marya said...

We know that place well! Hope you will get to the bottom of the sleep issues. We think of your family often! Have a blessed Christmas!

Lisa said...

Do they still have the painted lines on the floor? (I used to visit there routinely as a child for a heart murmur and I remember all the coloured painted lines on the floor to get you where you needed to go - take the green to the blue to the red...)
The Snoezelen room is an awesome place! I can see why Janneke enjoys it!
Hope your weekend gives you rest and refreshment!

Anonymous said...

We were at the drool clinic yesterday. My first time there at Holland Bloorview. It's a wonderful place too. It's like a giant NPCC! Amy

Michael and Brenda: said...

I remember being at the Sick kids hospital when Eric and Marya had Evan so early. I went there to see my first nephew for the first time. As soon as i saw your pics I knew it was the sick kids hospital. (I tend to look through the pics before reading.) The design of parts of the hospital are a master piece -- your pics are wonderful.
That is awesome that she is seems aware. It the little things that prove so much I am finding as well.
Brenda

Sonja said...

Two friends work there and I've never been inside so it was neat to see the pics! Thanks. Hope you have a nice Christmas break. Our kids have been out since yesterday--how about yours?