Monday, December 26, 2011

Merry Christmas!

We've had a wonderful Christmas here at Ruth Lake.  The eve was spent with our dear friends and their family we were a group of 25 for dinner.  Santa arrived on cue and Summer was quite enthralled with the big guy.  We had a great dinner and visit then it was home to get the treats ready for the reindeer and Santa's visit to our house.  We stopped by our neighbours who were having a party of their own to spread some more Christmas Cheer and Summer Hugs.

Christmas morning was very enjoyable.  Summer loved all her gifts and had fun playing with them for most of the day.

Trace and Geof had us over for Xmas Day dinner along with friends Nancy and Rob from Toronto.  Summer received more gifts - her favourite one, the baby bear.  It's just like 'baby alive' but the baby bear version.  Today, we already had to replace his batteries...

Santa visits on Xmas Eve

Treat's for Santa and the Reindeer

Santa Came!

Thursday, December 22, 2011

Christmas Concert Cuties

This afternoon was Summer's school Christmas concert.  It was quite a production. They started out by presenting a local charity group with over $900 raised to help build a school in Kenya.  Then the singing festivities began.

Summers group sang several songs.  Don took still photos and I captured the video - a well coordinated effort.  The darkness in the gym made both challenging. 

Afterward we popped into Summer's class to say bye and I snapped a few photos of her with her EA Nicki and her buddy Ethan.

Tuesday, December 20, 2011

What's happening this weekend?

Last night was Summer's weekly dance lesson.  At the beginning of class the group has a huddle where they discuss what is new with everyone.  Renee, her teacher asked the kids about the coming events this weekend.  Summer spoke up in an authoritative voice and said "it's Football Sunday!"

Yes, Summer, and it's also Christmas!

Last weekend, she was playing with our nativity nesting dolls, and she points to Mary, "Hey Mom, Mary is holding Baby Jesus! - I love that guy."

Thursday, December 8, 2011

She's Blown Us Away

Sometimes certain statements just stay with you.  Last week, Don and I attended a routine IPRC (The Identification, Placement, and Review Committee) meeting at Summer's school.  This committee:
decides whether or not your child should be identified as exceptional - Summer's 'Exceptionality' is defined as Physical: Cerebral Palsy; decides an appropriate placement for your child and reviews the identification and placement at least once in each school year.

Basically we discuss if Summer's needs are being met.  This time, the meeting was with the new principal and the Special Ed Coordinator.  It is an opportunity for us to voice any concerns with her learning or school experience.
Basically, the areas identified as Learning Needs are Summer's gross motor, fine motor, personal care, and self care.  So, that means she needs help with shoes, coats; tying, buttoning, zippering etc.  Nothing new there.  It's hard to get it all done with only one good hand. 

Her strengths were identified that she is a tactile learner, she is highly motivated, social skills with peers, positive attitude and intellectual curiosity.

The one statement that stuck with us is when the Special Ed Coordinator said: "Summer has really blown us away."  I guess others can see how hard she perseveres and are impressed by her - as are we.   

Wednesday, December 7, 2011

Letter to Santa

To be honest, I am not the biggest fan of the Christmas season.  It is overwhelming, expensive and I hate the crowds and the 'clutter' that comes along with it.  OK, I am not a scrooge.  I like the music, lights, treats and eggnog.

I also love seeing Summer's excitement when she sees Santa and the Christmas morning free-for-all of flying wrapping paper.  I feel nauseous when I think about when she no longer believes and when she starts to question why Santa sounds so much like Jade's Grandpa, Dale. 

Last weekend we put up our Christmas tree.  It's a fake one, since the 'Leak of 2005'.  But it does the job and Summer loves to hang the ornaments she's made over the last few years.  Then Don and Summer sat down to write 'the letter'.  He was very patient with her, and I think there was a 'play break' or two, but they persevered and got it done. 

Thursday, December 1, 2011


 Last Saturday we took Summer to the Backyardigans show at the Capitol Centre.   She enjoyed it, but I think she is at the cusp of being too old for it. 

She is wearing her new outfit from Auntie Corrine & Uncle Don

On Sunday we made some 'hello kitty' cupcakes for our neighbour Barb's birthday. 

Summer and Barb-the birthday girl

Sleeping Beauty

Thursday, November 24, 2011

Appointment Day - Orillia & Toronto

Tuesday morning we headed to Toronto.  We left the house at our regular time - 06:55, and made it to Orillia for 09:00 where Summer had a Botox follow-up appointment with Dr. Jones.  Summer was quite cooperative and chatty once she warmed up to her.  We talked about the Botox 'mishap' from June where her right hand was incapacitated for about 2 months by a 'spill-over' effect.  We decided that after 4 years of forearm injections (which is a tiny muscle and hard to target, even with ultrasound) and very little gains in range of motion and supination, that we will not have this injected for the foreseeable.  We will however, return for injections in her bicep and her calf.

The topic of serial casting came up again and we decided that we should really consider a three week casting stint to help increase the range of motion in Summer's right ankle, which means lengthening the heel cord.  The more we do this now when she is young, the more likely we can hopefully avoid surgery in the future.

This will mean she will receive her botox and 7-10 days later, the first of 3 weekly casts will be applied .  Each week would progress the 'stretch'.  Botox helps reduce the spasticity in the muscle to make it easier to stretch, but it is the stretch that helps elongate the other tissues like the heel cord to give the range of motion.  Most of us can move our feet into an inverted position, but Summer can only position her right foot at a right angle - on a good day.  We are constantly battling her growth (and she seems to have my 'tall gene') where her bones grow, but the soft tissue has to catch up.  She has grown more than an inch and a half since June. 

We thought we might do the casting over Xmas while Don is off work, but after discussions with our Orthotist, Karen, and Summer's physio, Krista, we decisded to wait until the spring.  We have Botox Scheduled for late March and then the casting appointments for April  - Seven appointments in all.

Summer's eye appointment at Sick Kids went very well.  Even L. the Orthoptist who is a wee bit patronizing at the best of times, was impressed with Summer's vision improvement in her right eye.  So our patching is reduced to three times per week for 2 hours.  Yay for small victories!

We had a lovely lunch, treated by my dear friend Heather, at a new Lebanese joint close to the hospital.  We are still mourning the closing of the Saffron Tree.  Her daughter Kirstie joined us, and as you can see, she and Summer hit it off.

We finished our day with a restful evening with Barb and Laurie.  It's always one of the highlights of our trip - great visit, enjoyed a nice dinner and played some cards (1-1 - grudge match in the spring... ).  Summer loves to help Barb in the kitchen and to play with Lisa's retro-cabbage-patch doll 'Colleen'.

My new Bestie Kirstie

Thursday, November 17, 2011

5 years and 37lbs later - It's Preemie Awareness Day

It's World Preemie Awareness Day today. How far we've come. How much we've learned. My friend and fellow preemie mom, Tracey, wrote an insighful post about this special day.  You can read it here: .

Through our experience as a 'preemie family' we have had the priviledge of meeting some of the most amazing children (I say amazing - and I really mean unfathomably amazing) and their dedicated, tireless, parents.  Here are a few photos I had handy, from along our journey. 
 Summer's early arrival- 11 weeks too early at just over 3lb.

Monday, November 14, 2011

'Best Playdate Ever'

On Saturday I took Summer and her friend Mayah to the movie Puss & Boots.  The girls have been cooking up a playdate since the beginning of the school year.  They are in the same class at school for the second year, and also attend the same after-school program.  Mayah is very bright, polite, helpful and fun to be around.  It is easy to see why the girls are such great friends. 

We went for lunch at East Side Marios before the film.  Mayah leans on the table, gives me a very serious look and says "Tammy, this is the BEST playdate ever.  Thanks for taking us to the movie!"

Thursday, November 10, 2011

Thoughts for today

Remember Me

Remember me when you want to give up, remember I didn’t...

Remember me when you think life is hard, remember my life is...

Remember me when you want to hurry through life, remember to slow down...

Remember me when you think you are too busy, remember I love you.

Monday, November 7, 2011

Smarty Pants

Summer received her first report card for the school year this past week. 
She is meeting all expectations!  We had an interview with her teacher as well and she gave us some great strategies to support her learning. Initially I was worried that she would feel left behind, and that the pace of the split class may be more than what she could handle, but she has shown that she is enjoying the challenges.  Her teacher commented on her getting along well with others as well as her level of independence in doing things herself.

We're so proud of her progress!

Last One there is a Rotten Egg!!

Summer's becoming a great climber (with two hands!)

Soccer on the deck 'air time'

Georgie Boy loves to hang out with us in the yard...  he's the cat that acts like a dog.

Monday, October 31, 2011

Halloween Eve

Since Halloween falls on a Monday this year, we did a preview around the neighbourhood to show off Summer's costume: the Elegant Witch  (she calls herself the delicate witch...)

"Black and Orange Day" at School Today

Wednesday, October 26, 2011

Mommy, I still love you...

...And I still love you too Daddy!

I was away on a training course for a week and Summer had a great time with Dad and Gramma.  The weather was wet and rainy most of the week, but I think a lot of leaf raking was fit in between the raindrops.  I arrived home on Sunday and Summer made sure I knew I was missed. 

On Sunday, October 16th, Summer participated in the April & Friends Walk at the Hospital while Dad and Gramma volunteered to help run the event.  Summer attached herself to one of the event volunteers, Jill and had a blast playing games in the gym.

Lynn Johnston was at the event to sign the children's books and also made her mark on
Dr. Simon Says's labcoat!

Thursday, October 13, 2011

Conservative Optimism

Yesterday Summer had her follow-up with her Pediatrician.  These visits are more frequent now because she wants to keep a close eye on her since we received the assessment that Summer's shunt is likely not working. 

She observed Summer and asked her lots of questions about school, which she mostly answered "I don't know." but then she volunteered lots of information in her own time.  Summer complained about the felt markers being all dried out, and how was she supposed to colour with dried out markers.  The Dr. promised to have new ones for her next visit. 

The Dr. and I chatted a bit.  I know she tends to be more optimistic than Summer's neurosurgeon on the topic of whether Summer needs the shunt or not.  I know that Summer's Neuro is very concious of instilling the fear of god into us, so that we do not ignore any possible signs of pressure.  We are OK with that - and will never ignore signs of pressure, but still, it is nice to experience a little optimism now and then. 

While Summer's Neuro will likely never say "she is out of the woods - no more need for the shunt", Summer's Pediatrician feels optimistic that if Summer shows no sign of pressure in the next year, we may be looking at the likelihood that she does not need the shunt. 

I know the shunt will likely never be removed - but at some point, I really hope we can be more certain than not, that Summer is doing all of the CSF absorption on her own. 

 Summer is showing Gramma her classroom
 While waiting to see the Dr. a display of 'equipment' was being exhibited in the gym at OKP.  Summer killed some time riding the Terrier Bike - similar to the one she uses at school

Wednesday, October 12, 2011

Keeping Gramma Busy

Gramma is visiting from BC and Summer is having a great time.  While I usually have a camera handy in my free hand, I must say, I haven't taken any pictures so far! 

I picked up Gramma at the airport on Saturday night and we stayed over with Barb & Laurie.  We headed out in the morning and did a bit of shopping on our way north.

Summer was ecstatic to see Gramma and she had lots of spontaneous hugs and kisses for her.  We cooked a turkey dinner on Monday and rounded out the weekend with lots of playtime outside in the spectacular weather.

Gramma has been coming to work with me this week to help out at the office.  This weekend is our annual walk/run which will have over 700 participants on the hospital grounds.  There is lots of last minute items to take care of.  It is a great help to have another set of volunteer hands.  Thanks Gramma!!!

Thursday, October 6, 2011

New Therapy Block

Summer started a new block of therapy on Tuesday. She'll be working on lots of skills.  It is quite the little workout for her.  I arrived just as she was finishing her warm-up on her bike.  She did a couple of rounds through the school halls, then it was down to work. 

Summer's new Therapy Assistant Lindsey is very nice and Summer took to her right away.  I am sure they will make a great team.  Summer will be able to have all of her weekly sessions take place at her school.

Tuesday, October 4, 2011

Sunnybrook Annual Report to Donors - Published!

It's official, Summer's ruby ring story is now published in Sunnybrook's Annual Report to Donors.
It is a privilege and an honour for us to be a part of telling the public how special Sunnybrook's Neonatal Program is.  It is staffed by some of the most amazing people for whom we have an unfathomable level of respect and gratitude.

Monday, October 3, 2011

Enjoying a beautiful day!

A round of baseball.  Summer has pretty good aim with the bat and even better aim with her arm.

We found a wee tree toad.

We relocated the tree toad so that George, our cat, didn't make him a snack.

When you live in the country, you have to be creative on where to put your hop-scotch.  The Canadian Shield makes a great foundation for hopping!

Here we go!

Summer enjoyed it, once she got over the fact that I put two too many squares on and the numbers went up to 12 instead of 10.

Chalk & A Rock = Country "Sidwalk Art"