Jaina's First Sculpt Barre Class

So today was Jaina's first barre class! It made me so happy when the owner of Sculpt Barre approached me and said she'd like to do a private barre class with Jaina. It is so thoughtful and inclusive of her to think of Jaina and our family. Class was held at 11am this morning, at the beautiful Sculpt Barre studio in St. Albert. Sure it was a bit of a challenge to get Jaina and her pretty pink wheelchair, her suction bag, her ventilator, and her bean bag chair up the stairs to the studio. But once we were there, she surprised me with two adorable tutu's, one bright and pretty pink one for Jaina, and a cute purple one for Addison. I immediately put J's tutu on, and then class began. Niki asked me lots of questions, making an effort to get to know Jaina and her wants and needs. Not a lot of people take the time to get to know her. Niki's kind and thoughtful interest in my dear daughter has certainly made me a sculpt barre fan for life. As if I wasn't already, at 81 classes as of today, I'm almost at my 100 class goal! But back to class, Jaina did some floor work, practicing her ballerina arms. And she did some plies, with a little help from dad. Dad carried all 75 lbs of her, and got into second position and plied away with Jaina! Nice work! We ended the class with Jaina holding on to the barre, and squeezing Niki's hand to say than you. When I thanked Niki for the wonderful Class, she said she just wanted to do it so that Jaina would get to experience something new. And boy did Jaina love it! Thank you to all of the ladies at Sculpt Barre ladies for creating Jaina's beautiful barre experience. You have made one of mine, and Jaina's wishes come true today, and I am so grateful that you took the time to truly see her for who she is.

Article for Apple Magazine

I am so excited to announce that I will have my very first published article in Alberta's Apple Magazine - Issue No. 2 that will be available in March. Jaina and I had our photo shoot for the magazine last week, and we are honoured to be asked.

Back to the hosital tomorrow to have her casts removed. She had ankle surgery on both feet, because her drop foot was getting so bad, we couldn't put shoes on. Which doesn't work in our -30C weather here!

She has made a really good recovery, although after each hospital visit, she gets her days and nights confused and is sleeply for most of the day. Hopefully she will switch back soon.

Family Centered Care

I am so excited about my upcoming presentation at the Stollery about Family Centered Care, and so happy that I met Sue last night!

Today I am so thankful to have Jaina in my life, for all she has taught me, and everything that she brings to this world. I love her so much, I hope she knows how much.

We lost 3 more staff last month, as they graduated from their RT program at NAIT. So sad (but also proud) to see them go off into the "real" world. We will miss them and hope that they keep in touch!

Here is an amazing article... http://www.theglobeandmail.com/life/facts-and-arguments/our-life-with-and-without-our-daughter/article1529653/

Trach Clinic

J had trach clinic today and all is well. Her pulmonologist thinks she is too tired, so would recommend that we put her on the vent during her afternoon nap - noon until 2pm, so that more of her energy can go into growth and development, rather than just spending all her energy to breathe.

But she is doing really well - and we are so proud of her! She has come a long way since those first scary beginning months where we very nearly lost her numerous times.

My Road

In Jan 2006, when I was pregnant with our first child, we were involved in a catastrophic collision, that left both me and my husband with major injuries. But most of all, my unborn child who was 20 weeks old, my husband had just felt her kick earlier that day, she very nearly died. And as a result has a severe anoxic brain stem injury, or otherwise known as severe cerebral palsy. So that is how our story began, and now we are trying our best to live our lives and be a strong, loving, supportive, family.

We added a sibling for J in March 2009 - little A was born a healthy 8 lbs, and she is a wonderful sister to J. This has added much joy to our lives, and a few more complications.