A Special Guest

Christmas has to be my favourite time of year. I just love everything about it. The music, the lights, the decorations, the food, the magic, and the traditions. And speaking of traditions, we started a new one this year, one that we have all had fun with! Let me tell you about our very own "Elf on the Shelf", named Starry. She arrived at our house direct from the North Pole on the first of December. Her job was to observe the girls' behaviour throughout the day, fly back to the North Pole each night to report to Santa, then be back before the girls woke up each morning. There were rules that came along with our elf. We were not to touch her as that would make her magic go away and she wouldn't be able to get back to the North Pole each night. And she wasn't allowed to move or talk to us. That was Santa's rule that Starry had to follow. If you only could have seen Marissa searching for 'Starry' each morning, it was priceless. Lots of giggles and "Mommy, you will NOT believe where Starry is this morning!" I will say that our Elf on the Shelf was one of my favourite things this Christmas. Here's a little collage of all the shenanigans that Starry was up to while she was here!

If you don't have an Elf of your own, here's some important information you should know. Every Elf on the Shelf comes from Santa Claus. Some come direct from the North Pole to your house, and some come from special adoption centers that Santa has approved. The adoption centers are often located inside certain stores (like Chapters). Much like you would go to the store to adopt a pet, your Elf on the Shelf can be adopted, too. The important thing to remember is that no matter how an elf gets to his or her family, they are all on the same special mission: to be Santa's eyes and ears during the holiday season.

Here's the story...

Have you ever wondered how Santa could know

if you're naughty or nice each year as you grow?

For hundreds of years it's been a big secret.

It now can be shared if you promise to keep it.

At holiday time Santa sends me to you.

I watch and report on all that you do.

My job's an assignment from Santa himself.

I am his helper, a friendly scout elf.

The first time I come to the place you call home

you quickly must give me a name of my own.

Once you are finished my mission can start.

What will you call me - Markle or Zart?

Will it be Foddle, Criddle, or Clyde?

Fisbee's cute, too, but you must decide.

Each night while you're sleeping to Santa I'll fly

to the North Pole right through the dark sky.

Of course Christmas magic helps me to be quick.

I laugh with my friends and report to Saint Nick.

I tell him if you have been good or been bad.

The news of the day makes him happy or sad.

A push or a shove I'll report to "the Boss,"

but small acts of kindness will not be a loss.

In the car, at the park, or even at school,

the word will get out if you broke a rule.

I'll be back at your home before you awake,

and then you must find the new spot I will take.

You'll jump out of bed and come running to see:

who'll be the first to spy little old me?

Maybe the kitchen, the bathroom, or den

is where you will find me, your special elf friend.

I can hide on a plant, a shelf, or a frame.

Where will I be? Let's make it a game.

There's only one rule that you have to follow

so I will come back and be here tomorrow:

Please do not touch me. My magic might go,

and Santa won't hear all I've seen or I know.

I won't get to tell him that you've said your prayers,

or helped to bake cookies, or cleaned off the stairs.

How will he know how good you have been?

He might start to think you forgot about him.

I can't speak to you, so says Santa Claus.

All of us elves have to follow his laws.

I'll listen to you. Tell me your wishes.

Would you like a game or some tiny toy dishes?

The gleam in my eye and my bright little smile

shows you I'm listening and noting your file.

The final decision with Santa now rests.

What do you think? Will you get your request?

The night before Christmas my job's at an end.

The rest of the year with Santa I'll spend.

So blow me a kiss and bid me farewell.

I'll fly away when I hear Santa's bell.

Of course I will miss you, but wait 'til next year.

When the holidays come I'll again reappear.

Supergirl Version 4.0

Somebody had a birthday...

I feel like I say this every year, but I can't believe another year has gone by! Seriously? I blinked and all of a sudden she's four. We are having a party on the weekend with grandparents and a few of her little friends, so of course there will be lots more photos to come. One thing I struggle with every birthday is whether or not to make her a birthday cake. Nevermind that she can't chew solid food, but with her Ketogenic Diet birthday cake is sadly off limits. But it's still a celebration, and I think it's important for Marissa to see Taylor's birthday celebrated in the most 'normal' way. So at noon on her birthday, I finally decided to make a cake. And the most appropriate one I could think of...

Taylor had an EEG today, apparently her 8th one, followed up by an appointment with her Neurologist. I felt great while the EEG was happening, I've never seen the monitor look better. In the past it's been so full of chaos, but take a look at today's thing of beauty...

Dr. Bello looked at the footage with us afterwards, and you know what he said. That it's only 1% abnormal. That's right, ONE percent abnormal. Which means 99% NORMAL!!!!! He said it shows rare, isolated spikes during sleep, but the wake background is normal. Incredible. Supergirl continues to live up to her name. He once again said how her EEG results are remarkable. From a girl who was once having several hundred seizures A DAY, to this, truly is remarkable. We feel so incredibly grateful for Dr. Bello who suggested the IVIG treatments that have brought Taylor's seizures under control. And for living in Calgary where we have the Alberta Children's Hospital, the only hospital in Canada that offers IVIG as a treatment option for seizure disorders. We are so fortunate to be where we are.

So, here you have her, Supergirl Version 4.0!

As of yet, the underlying cause of Taylor's epilepsy, profound global developmental delay and related CP (cerebral palsy), is yet to be discovered. Dr. Bello shared some interesting information with us today though. There is compelling evidence that females with a history of infantile spasms and intellectual disabilities is because of a gene called PCDH19. Because of the increased awareness, there is new gene testing to confirm the presence of this gene mutation. So the paperwork is being done, and Taylor will be tested soon. We've been researching it online tonight, and if Taylor has this gene, then the underlying diagnosis is something called EFMR (epilepsy in females with mental retardation). Like he's told us in the past though, finding a diagnosis isn't going to change anything treatment-wise. For some reason though, and I can't really put into words, I would like to have an actual diagnosis. A reason. An explanation. An answer to the "why does she have this" question that we've always wondered. We may have that answer soon, but maybe not. Time will tell.

Tonight though, I feel blessed and grateful and in awe of my real life superhero.

Moments

There was a moment last night with Taylor that I have been replaying in my head (and on my iPhone) over and over and over. With a typical child I would have laughed in the moment and then carried on to the next one. But when you have a child with complex special needs, it is these moments, that are fewer and further between, that carry you through the in-between times. These moments are really big and exciting, like mini-celebrations, and they fill us up like fuel in a car. And you know what else fills me up? Realizing that I'm going to get to experience special moments like these forever. There are certainly trying times and heartache living with special needs, but these moments keep teaching us what life is really about.

Before you play this, make sure to scroll all the way to the bottom and pause the music so that you can hear the video.

I Cried...

So, I cried in Neurology today.

It was just a regular follow-up appointment with Taylor's Neurologist. I think it's the first appointment where I haven't really had any questions for him. He loves questions. But Taylor is doing so well. She's stable, seizures are still at bay, and she's made such beautiful strides developmentally, that I didn't have anything big to ask him today.

I've asked the big questions already, several times over the past three years. Will she sit? Will she walk? Will she talk? The answers are never what I would like them to be in a perfect world. He's never confidently said yes, she will. But he's always been optimistic and encouraging that maybe one day it's possible.

Today though, I didn't ask any of those questions. She's sitting. It started back in October when she held herself unassisted one day for 8 seconds. Since then, whether she'd hold herself when you put her in a sitting position has been pretty random and inconsistent, but it's becoming more and more consistent. When you sit her up now and let go, she almost always holds herself for a certain amount of time. Sometimes just 30 seconds, often at least a minute, and occasionally up to three and a half minutes. I couldn't wait for Taylor to show off her sitting for Dr. Bello. He came into the office, I sat her up on the examining table, let go and she sat for a good minute before she lost her balance. He was beside himself, thrilled to see her accomplishment. I told him that mid-March she started saying "bababa", her very first consonant sound. He looked at me and asked if I fainted!

Somewhere between him raving about these accomplishments and how he has NEVER seen the kind of improvement she has had with seizure control, he said it...

"I think Taylor will walk in a year".

Pardon me? Did you just say what I think you said? YES, he thinks she could walk in a year {insert tears here}!!! The happiest tears ever.

He said that with her myelination progressing, her development is progressing, she's starting to sit and in a year or so she could walk. Myelination is the coating or insulation around nerve cells in the brain (white matter). It is an important part of the maturation of the brain that is required for the development of cognitive, motor and sensory functions.

Now, I'm not putting all my eggs in the 'walking' basket, and I'm not going to hold Dr. Bello to his predictions either!

But I am hopeful. I am encouraged. I am one proud Mama.

Happy Anniversary Taylor

Today marks the third anniversary of when Taylor's journey began, the day of her first seizure, just shy of five months old, the day our lives were forever changed. I can insert a great big 'Happy' right before 'Anniversary' now though. Yes, I can. Because my goodness we've come such a long way. Taylor has come such a long way. Especially since last year's anniversary post.

This time last year, after struggling for 5 months with an NG feeding tube, Taylor had g-tube surgery. I didn't think she was ever going to get back to oral feeds. Now she's sucking back 2 bottles a day by mouth, and we're looking to put a pureed meal back into the picture. Way to go girl!

This time last year we couldn't kiss Taylor on the cheek. The weekly feeding tube changes had caused her so much trauma that you couldn't go near her face without her freaking out. Now, she graciously accepts the hundreds of kisses a day we give her now.

And Granny kisses are extra special

This time last year Taylor was having several hundred seizures a day. That's no exaggeration. Now her EEG shows 95% improvement in seizure activity. Remarkable is the word our wonderful neurologist Dr. Bello used. And yes she is...remarkable! She is so very much more alert and aware of her surroundings.

This time last year Taylor's smiles were still few, and very far in between. Since July Taylor has been smiling every single day. They are so beautiful and precious and we celebrate every single one. No smile of Taylor's goes unnoticed in this house! She's even given us her first few little laughs, and let me tell you, when she graces us with one of those, it puts us over the moon.

This time last year we were starting to talk about getting her a walker. Not for the goal of taking steps just yet, but for the goal of tolerating it first and being able to hold her head up. Supergirl is rockin' the whole head control thing, and not only is she tolerating her walker, she has actually pushed herself to standing in it for about 8 seconds at a time!

Supergirl has pulled something new and very exciting out of her bag of tricks. When brought up to a standing position with her AFO's on, she's putting full weight through her legs, standing up tall, with very little support at her waist. She did this on Friday at school for her aide Vanessa, and put on a repeat performance for us when they got home. Vanessa was just bursting with excitement to show us, you could see how proud she was of our little girl, and that makes my heart happy.

This time last year we were still holding Taylor the way you would a newborn, cradled in your arms. If you tried to hold her upright, she arched back straight away with such force. Now we can hold her on our hip and she uses her strength to hold herself up beautifully. I love holding her like this.

This time last year we were still working on one of her very first goals of bringing her hands to midline. Taylor brings her hands together frequently now, it's very sweet to watch the way she plays with them.

This time last year, I hate to admit that I was doubtful about the prospect of Taylor ever sitting independently. Well...on October 13th, Supergirl sat independently for the first time and did it for 8 seconds! She doesn't do it consistently, but the time has been improving bit by bit. I am thrilled that she's proving me wrong. On the weekend I put her into a sitting position and she maintained it independently for 45 seconds! And she did it four times in a row.

Instagram shot of Marissa keeping Taylor motivated to sit all by herself.

This time last year Taylor was very quiet, she wasn't using much of her voice. But now? Wow, does she have a voice! And she loves to share it, especially at school and swimming. Lots of big drawn out Ahhh's. Lately, she loves blowing raspberries with her tongue sticking out, I think it feels funny to her.

She's still with Pacekids, and since her preschool programming started there this fall, she's doing all sorts of fun and new things. Time in the multi-sensory room which she always loves, music therapy with Sarah on Fridays, swimming outings, field trips, cause and effect games on the computer using a switch, using a light box, lots of sensory play, and she's starting to use the track system which I'm particularly excited about. She gets put into a harness and then hangs from the track in the ceiling with her feet on the floor. It can be used for walking, for jumping (sort of like a heavy duty jolly jumper), swinging. She's only been in it twice so far, but tolerated it well and I think once she realizes what she can do in it, we're going to see her do more great things. Once she realizes that she can use the legs that she loves to kick to actually bounce herself up and down, there'll be no stopping her!

We had a little Anniversary toast to Taylor tonight. This past year has been incredible for our special girl, so we raised our glasses of bubbly (um...ginger ale) and clinked them together, "To Taylor".