Tuesday, March 26, 2013

Purple...

...it's more than just a colour to us. March 26th is Purple Day, the global day for epilepsy awareness. Taylor is joined by over 65 million people worldwide who suffer from epilepsy. That's an awfully large number. We all wore purple today, here's pics of the girls...


Did you know that approximately 1 in 10 people will experience at least one seizure during a lifetime? One seizure, however, is not epilepsy. Epilepsy is a condition that is defined by multiple seizures. It is a seizure disorder. It is not a psychological disorder nor a disease and it is not contagious. The brain is made up of billions of nerve cells or neurons that communicate through electrical and chemical signals. When there is a sudden excessive electrical discharge that disrupts the normal activity of the nerve cells, a seizure may result. Anything that injures the brain or affects its functions has the potential to cause seizures.

So many people think of someone lying on the ground in full body convulsions when they think of a seizure. I thought that too before we were introduced to them up close and personal. That is what's called a generalized tonic-clonic seizure (formerly called Grand Mal), which Taylor has thankfully never had. A seizure may take many different forms including a blank stare, muscle spasms, uncontrolled movements, altered awareness, odd sensations, or convulsions.

I've had many different feelings today thinking about seizures and their role in this journey we're on.

Gratitude being the first. Two years ago, on my Purple Day blog post, Taylor was having several hundred seizures a day. Today, as far as we know, she isn't having any. I couldn't be more grateful. It's heartbreaking to think back to when her brain was so full of chaos from constant seizures that she couldn't make any progress developmentally. I'm so grateful that we're in a different place today, thanks to Dr. Bello for bringing IVIG on as the treatment that kicked those nasty seizures out of Taylor's head. I say as far as we know, because Taylor does this weird blinking thing with her eyes that I have found suspicious for quite some time. Unfortunately she's never done it for Dr. Bello, and not for an EEG either. I have shown Dr. Bello myself what they look like and he doesn't think they're anything to be concerned about. So I'm not too worried.

Two of my friends' girls are presenting as ideal candidates for brain surgery which could potentially rid both Claire and Clare of their seizures, and take them off their meds. For that I feel so hopeful, so happy for my friends who have watched their babies endure not just too many seizures, but seizures that have affected their breathing, seizures that have needed rescue meds to stop, seizures that are too scary for any parent to witness their child have.

Through this journey I met a mom whose little girl was on a very similar journey to Taylor's. Both our girls were severely developmentally delayed with no diagnosis as to the cause of their seizures and delays. Both started with infantile spasms. Both went on the ketogenic diet. Having travelled such similar paths, Carol and I quickly became friends, and with our regular coffee playdates, Taylor and Annika did too. Not just friends though, they were kindred spirits. They were so similar, the way they moved and the way they seemed aware of each other. Even though they couldn't play like typical kiddos, they seemed to understand one another. I think they knew they were the same. Annika was Taylor's first real friend. Their similarities grew further apart in time, poor Annika suffered the most unimaginable seizures, and her little body slowly started shutting down. She passed away just over a year ago. Of all days, Annika's birthday falls on global epilepsy awareness day. She would have been five years old today. She's been in my heart and on my mind all day. I miss seeing her and Taylor on the floor together, in sych with each other, biting their arms.





Happy Birthday sweet girl, you are so loved and so missed. I know you're up there watching over your family as they celebrate you today. I love to picture you dancing in a body that's free, with eyes that can see and a voice that can sing. And maybe, just maybe, you're in a purple dress today.

Tuesday, March 19, 2013

Cloud Nine

Actually, more like Cloud Five Hundred Eighty Nine. That's where I am right now. I've checked in and unpacked my bags, I'm going to stay here for a while. Tonight was big.

It takes a typical child around 7 months to learn to push themselves up from lying to sitting. Taylor has been working towards this accomplishment for the past 4 years, 5 months, 1 week and 7 days. Tonight she nailed it. What I'm feeling is so far beyond proud that I don't think there's a word appropriate enough.


I laid Taylor down on the floor tonight while I got her pajamas and when I turned back around she was sitting. I could hardly believe my eyes. I might have screamed. Then I laid her back down and she did it again. I definitely screamed, hollered, and cheered so loud that Marissa said it hurt her ears. Taylor was beaming with pride over what she just did. I grabbed my phone and that's when I captured this video.

I'm just bursting with love and pride here as I write. I cried for about half an hour straight. The happiest tears I've ever shed.

Monday, March 4, 2013

Sweet Dreams

We couldn't have been happier to be discharged from Children's the day after Taylor's surgery. After a rough afternoon of not keeping anything down, we decided to leave it for the night and keep her hydrated with just IV fluids. Feeds the next morning went smoothly and there was no more vomiting so we were good to go. I can't even tell you how amazed I continue to be with this little girl. That evening at home she was happy as can be sitting in her chair and playing on her iPad, full of smiles. A day after major surgery, a nasty incision the full length of her ear, and she seemed completely unphased by it all.


Today was a pretty exciting day. We have been talking about Taylor's bed situation for quite a long time. She's four and a half now and still in a crib. She's out of space. When she gets stuck in the slats in the middle of the night, the cries are heartbreaking. It was time for her to get a big girl bed, but a big girl bed is just not safe for her. She's a real mover at night and the detachable bed sides you can buy for toddlers won't hold her. They're not strong enough, long enough, or high enough. After lots of thought and research we decided on a safety bed made for kiddos, youth and adults just like Taylor, made by a company called Beds By George. It's a twin bed, with full sides all the way around it like a crib. Because it's a twin she won't outgrow it. And because it's going to be a forever bed, we made sure it would accommodate her needs, as well as ours, long term. It's a Hi Lo bed (adjustable mattress height) with full articulation (head, foot and knees adjust). And it's fully electric. The door is 40" above the mattress when at its lowest position. At its highest, we can change and dress Taylor without straining our back by reaching down into a crib. The door opens out much like a bi-fold closet door. It's an impressive piece of furniture, beautifully made. The guys from Motion Specialties arrived this morning and worked hard to put it together...


After they were gone I sat in the glider in Taylor's room and called Francis to tell him how amazing it was. And I had a few tears. Not because it made me sad, but because it's so perfect for my girl. I'm so happy that she finally has a proper bed that she'll be comfortable in, can't get stuck in, and will be safe in. How wonderful that one of us can climb in with her on nights that she's unsettled, and lie next to her to read a story before bed. Things that we haven't been able to do until now. Happy tears.


When we put her to bed tonight it was kind of a big deal. In a way it felt like when we brought her home from the NICU and put her into the crib for the first time. Her itty bitty newborn body was lost in the crib, it seemed so huge. Tonight we layed her in this big new bed and she suddenly looked like that itty bitty baby again.


Even though I know she will grow up and fill this big new bed, she will always be my baby.
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