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.

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.

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.

Tympanomastoidectomy

We made it to the hospital this morning with no hiccups thank goodness. Francis thoroughly enjoyed the fact that I had to get up at 5:30am. I didn't share that enthusiasm! Here's my cutie after we arrived at Day Surgery and got her changed, sporting her Supergirl g-tube pad.

Dr. Brookes had told me I could anticipate two hours minimum for the surgery, but could very likely be three. Francis and I were pretty on edge by the time 4 hours were up and the board said she was still in surgery. Holy stressful wait batman. Ended up being nearly 4.5 hours. When he finally came to the waiting room to talk to us he said that everything went very well. Some of the bones of hearing were completely eroded away, and some he had to remove to get access to the cholesteatoma. He also had to cut around the back of her ear and shave some bone for access as well. This was all expected, no surprises. He said in behind her eardrum was "packed to the gills" with skin. It's actually pretty gross to think about. He was able to remove all the skin successfully with the exception of a thin layer over one particular area of bone. He explained that if he tried to peel that layer of skin back and somehow damaged a specific area underneath it, that Taylor would be left completely deaf in that ear, forever. So he intentionally left that skin behind. Firstly, because he has to go back in six months from now anyways to remove any new skin that could potentially grow back. Second, he wants to have one of his colleagues in on that surgery to assist in removing the skin in that one tricky spot. He said if he were to give a percentage of how much skin he left behind, it would be like 0.1% which sounds pretty good to me.

Two shots before surgery, and two after recovery

Taylor was in and out of sleep for the next couple of hours. But when her eyes were open they were as beautiful as ever, she even had a wee sweet smile or two.

I had ordered a special Supergirl backpack last month for Taylor's feeding bag and pump, and what fabulous timing, it arrived in the mail yesterday. It's perfect, couldn't be happier! It's made by Jessica at TuFe Boutique, you can find her on Facebook here.

The main concern after this type of surgery, especially how long her teeny body was under anaesthetic, is nausea and vomiting. Taylor was being hydrated through IV and we were given the go ahead to try a feed at 2 o'clock. Normally I run a g-tube feed of 240mL over 20 minutes, but we decided to run it over an hour to err on the side of caution. The whole feed ran without incident, but as I was getting some water to flush the tube, she threw up pretty much the entire feed. Poor little darlin, she didn't even cry or fuss. So we decided to let her settle and try again at 5 o'clock, and we tried half the normal size feed, mixed with a little water, again over an hour. It was only running for about 10 minutes before she started throwing up. So we stopped again. For the next couple hours Taylor was pretty upset and throwing up whatever was left in her which wasn't much so it was more heaving than anything, which is awful. And she coughed/vomited up some blood. Some of which was quite dark (old) and a result of her being intubated during surgery. But there was a little bit of bright red blood. ENT was paged and because the ear and throat are connected, and Taylor was coughing/heaving so hard, they weren't concerned or surprised that there was a bit of blood. And there wasn't any more after that thank goodness. The charge nurse ordered to stop all feeds for now and just keep the IV fluids running for hydration. At 8:20 she got all her meds with a little water and managed to keep those down. She hasn't had any more formula, we're going to let her rest and settle through the night with IV hydration and try again in the morning. Patients having this type of surgery are usually discharged post op, but Dr. Brookes said that we could overnight if we wanted to due to the fact that Taylor isn't a typical kiddo. My gut did not feel good about going home today, and I'm so glad I asked to stay. If all this happened at home I would have been beside myself.

The evening nurse took the dressing off and cleaned Taylor up a bit. I thought Taylor might feel a bit better to get the hair off her face so I put pigtails in and she's been sleeping soundly ever since. Some of her hair is stuck to her head from blood along the incision, so hopefully the nurse can help with that in the morning to get it unstuck so that it doesn't pull. I'm pretty bagged, so I'm calling it a night and hope that my little love gets some good rest too. Fingers crossed that Taylor will be able to keep some formula down in the morning!

Cholesteatoma

Taylor has had several hearing tests done with Audiology over the past four years, and they have always indicated fluid in her right ear. It was never really causing any problems so we were told we didn't need to do anything about it, that it would naturally resolve itself at some point. However, at a regular appointment with her pediatrician, he noticed signs of quite a bad ear infection in her right ear. He prescribed antibiotics and saw her afterwards to follow up. No change. In fact, after three rounds of antibiotics there was no change. So he referred us back to ENT (ear, nose and throat doctor) at the Children's because he didn't know what else he could do for Taylor. So at our ENT appointment, Dr. Brookes suggested at this point that we go ahead with Myringotomy surgery (ear tube placement) to resolve the drainage and persistent ear infection issues.

Taylor went in for that surgery on November 19th. It's a very quick surgery, only 5 minutes, so I wasn't waiting long at all before Dr. Brookes came out to see me when he was done. He told me that the left ear went fine, he placed the ear tube in it, but that he ran into a surprise in the right ear. When he made the cut in the eardrum he discovered that there was no fluid behind it, and no infection either. He discovered a cholesteatoma, which is a skin growth that occurs in an abnormal location, the middle ear behind the eardrum. Hers is congenital, it's been growing since before birth. Cholesteatomas often take the form of a cyst or pouch that sheds layers of old skin that builds up inside the ear. Over time, the cholesteatoma can increase in size and destroy the surrounding delicate bones of the middle ear. Hearing loss, dizziness, and facial muscle paralysis are rare but can result from continued cholesteatoma growth. Dr. Brookes told me that because it will continue to grow (and could eventually affect the brain and cause meningitis), she would need a further surgery to remove it, called a tympanomastoidectomy. This surgery is about 3 hours long. Not exactly what I was hoping to hear when the doctor came to meet me after what was supposed to be a straightforward ear tube placement. But at the same time, are we ever grateful that this was discovered now.

Taylor's file at the Children's (whoa!) and heading off to surgery for ear tube placement

Next up was a CT scan which was required to get a clearer picture of how big the cholesteatoma is and exactly where it is. For the scan they put her into this sleeping bag type thing, zipped and buckled her up then vacuumed all the air out so that she was sucked in tight and couldn't move. She did awesome, she was still long enough for the picture that they didn't have to sedate her. When we met with Dr. Brookes a week after the scan, he told us that the mass has filled up all the empty space of the middle ear behind the ear drum, and continues on back behind the ear. There is already erosion present which means that some of the bones of hearing have been damaged. What came as a surprise at this appointment was finding out that she will need a second surgery about 6 months after the first one. Cholesteatomas have a nasty habit of growing back, so they need to go back in 6 months later to see if there's more skin growing, and if so, to remove it. At this second surgery is when they typically do reconstruction, as bones will be removed in the initial surgery. This all sounds pretty complicated and intricate.

Taylor the morning of her CT scan, love the bedhead!

This video is an excellent description of a cholesteatoma and the surgery (tympanomastoidectomy). You can watch it here.

Taylor goes in for her surgery first thing tomorrow morning. I will post an update following the surgery. Stay tuned and please keep our little supergirl in your prayers.

Happy New Year!

It's 2013 everyone, and we're still here! I guess the Mayan's were wrong, thank goodness! It was a pretty low key New Year's Eve celebration at our house, but we like it that way just fine. Call it age, or having kids, whatever the reason, we're okay with it! I managed to tidy up that afternoon, it's amazing how new gifts and toys can spread themselves over the entire main floor in a couple of days. It looked like a bomb had gone off in my living room. I decided to set the table up all fancy in black and white, even though it was just the four of us. But it looked so pretty. And nothing like getting into the spirit and enjoying an evening like a cleaned up place and a fancy dining room.

We were unsure leading up to NYE what we were going to do for supper. We ended up deciding to order a Chinese feast, and it was delicious, even if all Marissa seemed interested in eating was the fortune cookies!

Marissa wanted to stay up til midnight to watch the ball drop on TV, so we just watched the Eastern broadcasts, and the magic happened at 10pm our time. And that was just about when she was expiring, so it was perfect timing. We made party hats and silly pipecleaner glasses. We had confetti poppers and noisemakers.

Poor Taylor had fallen asleep and when we honked the noisemakers her arms shot up in the air, eyes wide open, as if to say "holy crap what are you people trying to do to me?!!"

Since we're talking about Taylor, our little Supergirl is still on fire! For a while now she will maintain an independent sitting position for about 3 minutes. The morning of New Year's Eve she sat independently for 11 minutes. Yeah, you heard right, 11 minutes!!! I am fiercely proud of her. She loves to stand, with minimal but mandatory support at her waist. Yesterday Francis stood her up without her AFO's or shoes on, felt her relatively steady and let go. She held herself for 2 seconds. Un-freaking-believable!!! I think she's giving us a little preview of what she has in store for 2013.

On a more personal note, I've never been one for New Year's resolutions. Does anyone seriously make a resolution and keep it for a whole year? Certainly not me! But I got the best idea from my friend Janella. This past year she made 12 resolutions that she committed to over each of the 12 months. One committment a month. Bite sized. Doable in my book. So I decided to do the same. More to come on that...

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".

Remarkable!

There is a reason why we call her Supergirl, and Taylor's appointment yesterday with her wonderful Neurologist, Dr. Bello-Espinosa, verified what we already know...that she is indeed remarkable.


At Taylor's Neurology appointment yesterday, with Dr. Bello-Espinosa

The first thing he went over was the cranial MRI that Taylor had on Friday. It shows a little immaturity and myelination delay, which is what he expected to see. No surprises. Except that her corpus callosum, which was once too thin (hypoplasia of the corpus callosum), is now well developed. Wondeful news.

We then talked about Taylor's last EEG, which was at the beginning of August. There was a 70% improvement from the previous EEG. But when I asked him how much improved it was from her worst EEG, he said 95%. Beyond our wildest dreams and expectations. 95% improvement over Taylor's worst seizure activity. Dr. Bello said that they have never seen a child with Lennox-Gastaut syndrome improve like this, never. In his own words, it's remarkable. He was beaming. She no longer fits the pattern of Lennox-Gastaut. We're in utter amazement over our special girl.

What does this mean? It means that the IVIG treatments are working. They don't even use IVIG for treatment of seizures anywhere else in Canada. But they have about 25 patients here at Alberta Children's Hospital on it. It may be a honeymoon phase and seizures could return, but for now, Taylor's brain is at its best and now is the best opportunity for us to see what she will be capable of developmentally. I feel like this is her year. She's already stronger. She's smiling. She turns three in a couple of weeks and I think if seizures can stay at bay, she has the potential to make great strides this year. Taylor's physiotherapist has always said that she believes Taylor will be able to sit independently at some point. As positive as I try to be for the most part, I have had trouble believing that. But now, oh I'm a believer alright. I see the possibility. What a dream that would be.

Dr. Bello brought a new colleague in to meet us, Dr. Morris Scantlebury. He's from New York and developed a model of infantile spasms. He is also amazed and intrigued by Taylor's dramatic improvement. He will be writing on her case for medical journals. Imagine that! We asked what the attraction to Calgary is. Apparently the Neuroscience Department here is the best in North America. So, not only is Taylor doing better than we could have imagined, she is in the very best hands here. We already knew that though, Dr. Bello is the best. We are so very grateful.

We talked about cerebral palsy, when the brain is not driving motor abilities. And that is definitely the case with Taylor. He agreed that she technically has Hypotonic Cerebral Palsy. Much rarer than the more typical spastic forms of the disorder. So we have another condition added to Taylor's list.

We also talked about Autism. Children with a history of infantile spasms have an increased likelihood (as high as 80%) of developing autism. This is a behavioural diagnosis involving failure to develop language, impaired socialization, and stereotypic repetitive movements. She does display autistic features and has the self-stimulatory behaviour (shakes her head back and forth, rocking, biting herself), but at this stage it's too soon to evaluate whether or not she has autism because the amount of seizure activity she's had and the chaos in her brain could be contributing to these features. They will be better able to more accurately evaluate the possibility of an autism diagnosis a little further down the road, perhaps a year, if her seizures stay at bay and her brain has the chance of allowing her to progress developmentally.

For now, my girl has a remarkable improvement in seizure activity. She has amazed her Neurologist. She continues to amaze us. Supergirl is flying high! And we're right up there with her.

Music to my ears

We got back from our family fishing trip to Beaver Lake on Saturday night. With a full van though, we had to wait until Sunday morning to pick up our sweet Taylor from the Rotary/Flames House. I couldn't wait to hold her and drink her in. A week apart is a long time, a nice break from all that she requires care-wise, but she was very much missed by all of us. I was so reassured by the updates that the nurses sent me saying how well Taylor was doing and that things were medically uneventful. Really helped ease my mind knowing that she was okay and in good hands. The staff are all so wonderful there and Taylor was kept very busy and active. She went in her standing frame for an hour every day, was able to use the multi-sensory room every day, was taken for walks outside in her wheelchair. One of our respite caregivers, Donna, went over to pick her up on Wednesday and take her over to the hospital for her IVIG treatment. While they were there, one of the Home Nutrition nurses treated more granulation tissue on Taylor. On Thursday they took her back over to the hospital for the ACH Stampede Parade where she got her own cowboy hat! She even made strawberry ice cream with the Child Life Therapist. Taylor was also spoiled with lots of visitors. Grandpa & Grandma, cousins Megan and Jill, her developmental aide Sharlene, and Shar's daughter Amanda. What a lucky little girl to have so many people come to spend time with her. Thanks so much you guys. Rotary gave us a CD with photos they took of Taylor over the week...

We were thrilled to pick her up on Sunday and bring our baby home, the four of us back under the same roof. So happy. Once we got a bit settled, Francis and Marissa left to go pick up Koko from the kennel. And then a beautiful thing happened...

I was changing Taylor's diaper on the change table in her bedroom. I blew a raspberry on her belly and she smiled. Smiles from Taylor have been few and very, very far between. It's one of the things we want so very much. Desperately seeking smiles. I blew another raspberry and she smiled again, and then ... ... Taylor let out a wee laugh. Yes, I said L.A.U.G.H. I was beside myself. And nobody was home to hear it but me. It was our special moment. Never to be forgotten. I am going to keep this memory locked up in a special compartment of my heart forever. After two years and nine months, I heard a wee laugh from my beautiful girl. My Supergirl.

I brought Taylor into the playroom. We were lying on the floor together and the garage door opened. Taylor smiled. I can hardly believe my eyes at this point. I ran downstairs, opened the door to the garage and yelled at Francis to grab his iPod and come upstairs RIGHT NOW! He and Marissa came up right away, Koko in tow. Francis started the video on his iPod and I gave Taylor a raspberry. She smiled. I gave her another one and then we captured it. Taylor's laugh. The laugh that has us completely over the moon. The video is sideways, you'll have to tilt your head, but it's soooooooooooooo worth it!

Taylor has been smiling ever since. I don't know what happened in the week that we were gone. But something has shifted, and Taylor is smiling. Responsive smiles. I squeal with delight every single time she does it, the novelty is not going to wear off. It's the most beautiful thing. It's what I've been longing for. Whether the smiles are here to stay, or just visiting, I'm going to soak every one in as though it's the last. I will not take a single one for granted. The little laughs are not as frequent, but they do happen every so often, and they are delicious. Yes, delicious. YUM.

What an amazing week it's been!

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.

Creepster

I was telling Marissa last week about a park in the community next to us that has a swing for Taylor and a swing for her. I should know better not to say such a thing unless a trip to see it for herself is imminent. For one reason or another we didn't get there until yesterday. It always bothers me that a trip to the park is always for Marissa and there's never anything for Taylor. But this park, just around the corner in Cranston, has a swing for special needs children. Thank you Chantel for telling me about it, we finally made it!

To say Marissa was thrilled to be able to give her sister a push and then swing right beside her is an understatement. It will be forever known by Marissa as the-park-that-has-a-swing-for-taylor-and-a-swing-for-me. I love it. What a joy to see both my girls swinging side by side at the park!

While Taylor enjoyed her very own swing, Marissa enjoyed her usual park fun...

We got to try out something new today with Taylor. We got a "Creepster" on loan from Pace. One of the kids from Pace has a very handy grandfather who made a couple of them for Pace. It may be a knock-off but you'd be hard-pressed to tell it apart from the real deal.

The Creepster Crawler assists children with crawling when this activity cannot be achieved independently. Instead of a caregiver (or two) trying to support the child’s arms, legs, head and trunk, the Creepster Crawler does this with a seven-point harness. This frees the caregiver to encourage the child to crawl. Crawling is an important step in development. When a child is on his/her hands and knees, the arm and leg joints, muscles and connective tissues receive feedback (proprioceptive feedback) to let the brain know where the body is in space which helps stabilize the joints. Crawling also helps to build muscles in the arms, legs and trunk. It is also the precursor to walking since you move your arms and legs with the same pattern as you do for walking.

The Creepster Crawler is used on a smooth surface at home, inside or outside, to promote independence, work on muscle strengthening and training. It’s also a great therapy tool as well. The Creepster Crawler can support the child on his/her hands and knees while the therapist/caregiver works on encouraging the child to reach for objects, weight-shifting and increasing head control.

When Shar arrived today for her session with Taylor and showed me the contraption, I thought to myself there's no way Taylor's going to be happy in that. She hasn't been happy doing anything on her tummy since the g-tube went in. But Supergirl proved me wrong once again, I love it when she does that! There was a teeny tiny bit of resistance from her as we got her strapped in, but once she felt secure, she didn't seem to mind it too much at all! She put a little bit of weight through her arms from time to time, and through her legs too. No pushing forward with them though, that will indeed take time. The main thing I think it's going to do for her is help her head control, it's very hard work to keep her head up while she's in the Creepster. She did a great job of keeping it up today, but she did take breaks and rested her head on the floor until she had enough energy back to lift it up again. What a girl!

Marissa slept over at Granny's last night after Sunday dinner, so I enjoyed a nice quiet house just me and Taylor all afternoon. When Mom brought Marissa back, she had her craft-of-the-day in tow. The cutest little wooden spoon puppets ever! Does the dollar store realize just how much happiness they offer?!!!!

Happy Monday everyone!