Happy Halloween

Happy Halloween everyone! Isn't my Taylor just the cutest little ladybug you've ever seen?!?! We paraded her around Southcentre Mall in costume while Marissa did some trick-or-treating, then she was my partner back at home answering the door to all the wee trick-or-treaters who knocked. Sadly there weren't that many, which means we have hoards of chocolate left over. Oh darn, I guess we'll just have to eat it ourselves :-)

New Set of Wheels

Well, it looks like Taylor`s near future is going to include a wheelchair. This is a difficult one to swallow because it draws attention and screams out loud that something is wrong. We truly believe that this is just a short term need, at least until she can support herself in a sitting position which is likely to take another year. As much as I don`t like the idea of a wheelchair, the support that the insert will give her is amazing. For her hips, her trunk and her head.

The foam inserts that they originally made to put in her stroller just aren`t working, they don`t give her firm enough support and she`s always flopped over with her head hanging. The wheelchair and insert is fully adjustable as she grows, so for where Taylor is at right now it really is going to give her the support she needs. We`ll have to manage with the stroller for a bit longer, it can take up to 3 months to get the wheelchair, seems like such a long wait.

It`s so easy to stare at people in wheelchairs or with at people with special needs, I hate to admit that I`ve done it myself. Boy does it ever feel different to be on the receiving end.

Black & White Birthday Party

Today was a great day! Taylor celebrated her birthday with the Dengis' a few weeks ago and today we had a party at home with my family, a few of our close friends, and Francis' parents were able to make it down from Medicine Hat too. We had a black and white theme. It is what Taylor sees best, so we wanted her celebration to be as stimulating for her as possible. We decorated with black & white streamers and balloons, we had a black & white birthday cake, presents were wrapped in black & white, some of the gifts themselves were black & white, and almost everyone was even dressed in black & white. It was great! Taylor was a happy little birthday girl, she enjoyed lots of cuddles, let Marissa open all of her presents, and indulged in a little birthday cake. What more could a 1 year old ask for :-)

Last Holter???

Well, we went to Cardiology Clinic today for them to put a 24 hour holter monitor on Taylor for hopefully the last time! They just want to see if the arrythmia is still gone since she's been off the beta blocker meds. Once our Cardiologist, Dr. Clegg, has reviewed the results she'll let us know and hopefully that will end our need for Taylor to have a Cardiologist!! One less doctor, one less med, it's all good :-)

Surgery Clinic

Back to surgery clinic today, this time thankfully there was not a 3 hour wait, we got in pretty much right on time. Dr. Wong is pleased with how Taylor's incision has healed and he has given us several sheets of DuoDERM dressing. We just cut it with rounded edges a little larger than the scar itself and stick it over like a bandaid, and change it every 5 to 7 days. There's something in it that will help the scar heal nicely, turn white, and prevent the line from thickening. He also gave us the name of a scar treatment gel in the US for us to order, called Dermatix, so we have ordered that too.

Sensory Room

Well today at Children's our Infant Team appointment was in the Snoezlen Room, a sensory room. Taylor really enjoyed it. She's always liked looking at lights, and in this room they dimmed the main lights and had several different 'light' things for her to explore. There was a tunnel we put her in that was all black with thousands of tiny fibreoptic lights around the ceiling, I wanted to go in there myself :-)

There was a bubble tube with a switch to change the colour of the light shining in it, a huge gently vibrating beanbag type chair, and these skinny (like spaghetti) light tubes. I wish we had some of those at home. She enjoyed lying on her side and looking at them, they changed colours too. There were other things in the room, but I think that was all we used today. We'll have to go back another time for sure.

Happy Birthday Taylor!!!

Our beautiful Taylor is officially 1 year old! In many ways this year has been long and very trying, but I still look at her and can't believe that she's already ONE! Where does time go?! We just spent a quiet night at home, gave Taylor a couple presents, and her very first taste of cake. We had some mini "Crave" cupcakes and with a little assistance from Daddy, she sucked back that icing with no trouble whatsoever. I'm sure she'll find breakfast disgusting tomorrow now that she knows what other yummy things are out there!!! Too funny. After all the excitement she passed out in her high chair surrounded by her gifts. Oh to be a baby :-)

Wahoo!

Taylor does NOT have Mitochondrial Disease!!!!!!! Dr. Wong called today with the good news. He got the results of her muscle biopsy and it didn't show any abnormalities. This is a GIGANTIC relief. Mitochondria are what give every cell in your body energy to sustain life. But I don't care anymore because that is one road we DO NOT NEED TO TRAVEL DOWN :-)

Celebration With the Dengis'...

Taylor's cousins Stephanie and Leah planned a joint birthday celebration today for three of the Dengis babies. Taylor & Clara (Stephanie's daughter) are both turning 1, and Leah's son Scott is turning 2. It was a great day with the Dengis', fun to watch the wee cousins play together, and a nice chance to visit everyone. Daddy got to take Marissa and Taylor to the party but unfortunately I had to miss the festivities as I was in Vancouver for another celebration, the beautiful wedding of a dear family friend. Thanks Steph and Leah for putting on the party!

Therapy Kind of Day

The therapists at CNIB and Children's are partnering to provide group therapy sessions so that we as parents can benefit from the expertise of professionals specializing in infant development and vision loss. The point of the group is to provide parents the opportunity to network and share ideas, to support parents in facilitating skill development in all developmental areas during every day activities, to provide parents and child the opportunity to practice these skills, and to increase awareness of additional resources.

The first session was today on sensory exploration. They had several stations set up including a vibration mat (which Taylor loved and then fell asleep on), the little room (always a hit with Taylor), messy play on a lightbox wrapped in saran wrap (we skipped on the messy stuff and found some squishy stuff in ziplocs instead), various musical instruments (that we didn't get to), and "Nessie", a huge musical water instrument (unfortunately Taylor didn't find that too interesting today because she was tired).

This afternoon we had an appointment with Infant Team back at Children's. We're still working on much of the same positioning techniques but talked about a few new things...

• From her back, pulling Taylor up to sitting, allowing her to put her arm out to start pushing through her arm and pulling up through side.
• When on her tummy, pulling one leg in at a time towards hip to help her propel herself in commando crawling.
• Try pausing in movement games like bouncing on knee and waiting for Taylor to "tell us" (ie facial/body movement) that she would like to continue.