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.