Pride

We are proud to be Canadian! And we sure showed it on Canada Day. We all wore red and white, put Canadian flag tattoos on our cheeks, I even made a Canada flag cake. We were patriotic indeed. Happy 144th Birthday Canada! Marissa was quite into the whole celebrating Canada thing, however she did have some trouble grasping what Canada is. We tried to explain that it's the country we live in, but the concept doesn't quite register yet. Too big I guess. One day she will understand the pride of being Canadian. How fortunate we are to live in this amazing country. How respected we are worldwide. The health care system that we consider second-to-none, after discovering over the past two years just how much is provided for our daughter with special needs. We are a peaceful country. Anyone can choose to pursue an education. There is so much good here that we take for granted day to day, but we are indeed very fortunate to call Canada our home.

Proud to be Canadian...proud of my cake :-)

Beautiful day with clear blue skies

Sweet smiles from my monkey

Sisterly love that makes me proud

As patriotic as we can possibly get!

Today was the 4th Annual Race For Pace. The third one that we've participated in. It was a gorgeous day, warm and beautiful blue skies. Perfect day for a lovely walk, joined by Mom & Bryan, Auntie Candace & Uncle Gary. We did the 5km walk together and raised money for Pacekids programs. To say thank you to all our friends and family who contributed to this incredibly worthy cause just doesn't seem enough. You have touched us with your generosity. Taylor was presented today as the TOP fundraiser for the event. As of today we have raised $4,420 for Pace! Several of Francis' co-workers contributed, and Penn West will be matching all of their donations, which will put Taylor's fundraising for the Race for Pace at over $6,300. THANK YOU everyone from the bottom of our hearts!!!!!!

Look at me, I stayed awake for the whole walk this year!

Taylor being recognized as the top fundraiser!

Taylor's walking buddies

Supergirl shone today xoxo

First thing tomorrow morning we head off to Beaver Lake for our annual family fishing week. Jaime & Justin can't make it this year as they're in the middle of their move to Calgary. We will miss them, and Marissa will sure miss playing with her cousin Mady all week, but they'll soon be living just a two minute drive away, so we can't be too sad! With an empty bed in the cabin, Mom & Bryan have invited my cousin Erika to join us for the week...YAY! Erika adds serious life to any party, so a good time is definitely going to be had! We may need to check in to AA though before the week is out :-)


We decided this year to have Taylor stay at the Rotary Flames House for the week. It was a tough decision, but we know that she is going to be very well cared for there by the nurses and doctors. She sadly just can't get the same enjoyment out of this Beaver Lake week that the rest of us do. There is no place for her to have her oh-so-favourite floor time, it's not at all wheelchair friendly, the playground doesn't have an appropriate swing. The list goes on. She will be so much more comfortable and happy at the Rotary House with swings, kushy mats to roll around on, cozy chairs, and a wonderful sensory room. We are going to miss her desperately, it was tearful for me leaving her today.


I discovered a book at Hallmark last week and simply HAD to get it for Taylor. It's a recordable book called All The Ways I Love You, and you record yourself reading the story. So that you can read to your loved one even when you can't be there. I was crying in the middle of Hallmark as I read it and thought about us recording the story so that Taylor could hear our voices every day while we're gone. It's amazing. Francis, Marissa and I recorded it together, taking turns on each page. I can't even begin to describe how I feel about this book, it is a beautiful thing.

We miss you already Taylor xoxox

Overwhelmed

Overwhelmed indeed. That is the only way to describe how I feel about the unbelievable generosity of our family and friends.

We are participating in the 4th Annual Race for Pace, benefiting Pacekids Programs. As you know, Taylor is a student of Pacekids. Diagnosed with intractable epilepsy, cortical visual impairment, and severe global developmental delay, we so very much rely on Pacekids to help our beautiful girl reach her potential. When I sent out our initial request for pledges, I had set a pretty steep personal goal of raising $2,000 for Pace. When our pledges surpassed that, I set a new goal of $3,000. Yet again, you have amazed me. Our current goal of $4,000 is nearly met. We have raised $3,750 so far towards the Pacekids programs that help our beautiful Taylor, and so many other very special children like her. The big event is a week away, on Saturday, July 2nd. There is still time to contribute if you would like to be part of this growing gift, please click here, and we thank you from the bottom of our hearts.

Your generosity has really taken my breath away, we are beyond grateful. Because we get to see the results of all the money raised for Pace. We get to see those results through our daughter. We get to see her make little gains and move towards reaching her potential. We cannot even begin to describe how very much we appreciate your generosity, your thoughts, your prayers, and your encouragement.

Thank you so very, very much for being such a special part of our journey with Taylor.

Project Runway

Saturday, April 16th was the 8th Annual Pacekids Fashion Show Gala & Auction Fundraiser. The vision at Pacekids is to provide quality education and therapeutic services for children with special needs. They have grown significantly in recent years, doubling the number of children they serve as a result of two new programs. Through this event, they raise the funds necessary to operate the school and its programs, so that our beautiful Taylor and all of the other very special students have the opportunity to realize their potential. Their goal this year was to raise $50,000.

What makes the fashion show part of the evening so special is that the kids from Pace are the models, along with their siblings. So that meant Taylor and Marissa got to be runway models for a night! There was plenty of primping that afternoon getting ready for the event. First up and long overdue was a haircut for Taylor at Beaners. I french braided Marissa's hair and painted her nails. Granny made beautiful pearl jewellery for the girls, including a freshwater pearl binky clip for Taylor...outstanding!

The jewels

The shoes

The gowns

The fashion show was wonderful. Of course my favourite part was seeing my girls all gussied up, but the kids were all great. They were in wheelchairs, walkers, braces...all with proud siblings by their side. Beautiful. Emotional. Funny. Funny with respect to Marissa anyways! I suppose a room full of grown ups staring at you is kinda intimidating and can bring out shyness in little ones. Marissa's 'shy' takes the form of her playing with her tongue. It sticks out, rolls around, eyes down like she's all embarrassed. Funny girl indeed. Cause once you know her she's so far from shy! As the girls were approaching our table I got up to take some photos. To my horror when I clicked the button for the first time, nothing happened. At that very moment I could see the memory card sitting on my desk at home. I'm still sick about it. No photos. Luckily there was a photographer there for the evening doing candids of the fashion show, and taking family photos afterwards. So, thanks to Illusions Photography, here's a couple...

Thank you Sharlene for escorting my little darlings and taking care of them for the evening!

Our family shot

Dinner was a really great buffet with so many choices. I realized halfway through the line that I had taken up far too much space on my plate with salad and barely had enough room for the good stuff!

The auctioneer for the evening was Jon Montgomery, Canadian gold medal winner for Men's Skeleton at the 2010 Olympics in Vancouver. Seems like an odd roll for an Olympian, but his career is actually as a car salesman and auctioneer. He totally made the auction, he kept things going and was lots of fun. Man, can he talk fast!!

We had a really nice evening. Joining us at our table was Mom & Bryan, Kim & Martin, Debbie & Jonathan. Thank you guys so much for coming and supporting Pace, it means so much. To us, and to so many amazing families. And a big thank you to Taylor's aide Sharlene, she escorted the girls for the fashion show, took them home, looked after them and put them to bed so that we could enjoy our night at the event.

I love this shot that Illusions took of one of the tables from up above

Random Bits

Last Friday Francis went to the PUF info session at Pace. With our last few questions answered, we have decided that when Taylor transitions to PUF programming in September, she will do so at Pace. We already know the centre, like what they have to offer, and we think it's the best program for her. Feeling really good about our choice and glad that this piece is now done. Something to check off the 'to do' list, which always seems to be miles long!

Taylor's been working so hard with Shar on her home program. Here's a few pics to show off her efforts and the wee little things that make us cheer, "yay for Taylor"...

You're supposed to let us put FOOD in your mouth Taylor!

Deep in concentration focusing on the triangle

Nice holding your head Taylor!

Tray play with her piano to encourage reaching and touching

Mesmerized by her jingle bells

Standing so tall...she fell asleep like this believe it or not!

Went to see the Pediatrician today. Haven't been yet for her 2 year check up, but mainly went to discuss the urgency of this g-tube surgery. Now that we've made the decision to go ahead, it can't happen fast enough. Sitting around waiting for GI to call us with an appointment is not time well spent. Can't this be fast tracked? She needs this. She can't keep going through the traumatic NG changes. Mommy can't either. Dr. Palmer was very supportive. He's going to put in a referral to Surgery Clinic, but he does feel that it's still important for GI to evaluate whether or not there is a need for a fundoplication. This is where the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and the stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily. If a fundoplication is needed, it should be done at the same time as the g-tube surgery. So this is why the GI evaluation is a critical piece. Taylor doesn't have alot of reflux, but apparently having a g-tube can make reflux worse, and the pediatrician relayed a concern that with developmentally delayed children, there is risk of refluxing in their sleep and aspirating that reflux, and that is very dangerous. Sigh.

Wish it wasn't all so complicated.

Two Choices

We went to the PUF Resource Fair this morning. All the agencies in Calgary who provide PUF were there to provide us with information that we will need to decide where to put Taylor. Because of the severity of her needs, she really needs one-on-one care.

Of all the agencies that were there today, there's really only two options for Taylor that provide one-on-one aide support. Pace, where we are currently in the Family Support Program, or GRIT.

G.R.I.T. (Getting Ready for Inclusion Today), is mainly a home-based program. 2-3 hours a day, 5 days a week. They provide an aide to work one-on-one with your child in home and/or the community. You can also take advantage of going in to the center where they offer specialized activities such as music therapy and a sensory room. Therapy is once a month on a consult basis. What I like about GRIT is that if your child isn't well enough to attend center-based activities, your aide will still come to the house, and if your child is hospitalized for a length of time, the aide will still go to see them.

Pace is a combination program, 3 hours a day, 5 days a week. Two days are in the center and three days are at home, all with your one-on-one aide. Sensory room, music therapy once a week, swimming once a month at Emily Follensbee (where Taylor will go to school), a field trip once a month. There is a 1.5 hour direct therapy session once a month with the therapists where the parents are included. In addition, two weeks out of the month the therapists lead the class, and the other two weeks they are in the classroom circulating from child to child. What I also like with Pace is that you do not have to be there while your aide is with your child. So there's some freedom there to not always have to be home (or at the center) during those times.

Pace is having their own private info session next week, so we'll go to that before making our decision. But I think we are leaning towards staying with Pace.

I'll wrap up this post with a few cute pics of Taylor on the ball this week. She had just finished her bath and was ready to go down for a nap, so she was too pooped to work very hard...

Race for Pace

Today we participated in the Race for Pace! It was a fun run and walk in support of Pacekids Programs, which Taylor is now part of. We managed to raise about $1,500 in pledges, so thank you so much to those of you who helped out. The weather ended up being beautiful. Taylor was awake for the start and for the finish and she collected her first medal.

Help Is On The Way...

We got to meet Lana tonight, the Developmental Aide lined up for us through Pacekids. She seemed very nice and we had a good feeling from her. She spent a little bit of time with Taylor and told us about her background. She was most recently working as an aide to adults and felt that her role was more to do with maintenance. She wanted to be more involved and see progress being made with her clients so she decided to start working with children instead. In the short time since she made the change she's found it already very rewarding and is really enjoying her involvement with the families that she works with and seeing the children make progress.

Lana is able to start working with Taylor on July 6th. She'll come to the house for 2 hours every day Monday through Thursday, and we'll go with her to Pacekids on Fridays for the Family Support Program. We're counting down the days!

Father's Day