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.

February Photo-A-Day

I love participating in this Photo-A-Day challenge that Chantelle Ellem posts each month on her blog, Fat Mum Slim. You can read all about how to play here.

Here are my photos from the February challenge, all taken on iPhone...

1. FORK - in the pathway
2. PATTERN - mosaic floor tile
3. SOMETHING BEGINNING WITH 'E' - our section of the resort, esmeralda
4. HOPE - really hoping she'll lose her fear of deeper-than-her water and learn to swim without the life jacket

5. SOMETHING YOU SMELLED - mmmmm...cappuccino
6. SOFT - looks prickly, but these needly branches are actually quite soft
7. YOUR NAME - written in the sand
8. SOMETHING ORANGE - her sweet little off the shoulder bathing suit

9. GUILTY PLEASURE - i won't admit how many of these i ate at breakfast today ;-)
10. 3 O'CLOCK - feeding time for taylor
11. ENTRANCE - where we had supper
12. WHERE YOU ATE LUNCH - at the snack bar by the beach

13. WALKING - in her sleepers, blankie under arm, puppy suitcase in tow, walking on the tarmac to the plane that will take us home
14. LOVE IS... - these two darlings, and this shot was totally unprompted
15. INSIDE YOUR FRIDGE - after two weeks away i seriously need to get groceries
16. PERFECT - amazing kit kat cake my dear friend made

17. IN YOUR HAND - my cuppa tea
18. SOMETHING YOU DON'T LIKE - getting marissa up and ready for school
19. I AM... - picking her up from the bus
20. WHERE YOU STOOD - at sobey's

21. FULL - having lunch at five guys will certainly make you feel that way
22. MAKES YOU SMILE - don't know what came over her, but she up and decided to vacuum
23. A WORD - playing with one of taylor's new ipad apps
24. CLOUD - pretty pink swooshy sunset clouds

25. ON YOUR BEDSIDE TABLE - the usual stuff, only thing missing is my iphone which i'm using to take this picture
26. QUIET - sleeping soundly after surgery
27. PLAYING - the way she's playing you'd never know she just had surgery
28. UPSIDE DOWN - marissa likes to pour in the cheese

Join me for the March challenge! Below is the list of prompts, for more details you can click here.

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.

Punta Cana

We've been home for a week now, but I'm still savouring the memories of our trip to the Dominican. Two weeks, our whole family, on a tropical vacation. It was sooooo lovely...

We stayed at the Bahia Principe Esmerelda. The grounds were beautiful, the resort very nice. Good food, great shows. I can never get enough of palm trees, turquoise water and tropical flowers. The beaches in the Dominican are the nicest we've ever seen. Beautiful, clean white sand, crystal clear water. Sigh!

Marissa had lots of fun. Unfortunately the Kids Club wasn't what we had hoped for. It had so much potential, the list of activities through the week were awesome, but there was hardly ever any kids there. Marissa was disappointed, she really wanted to have friends to play with. She did meet two very sweet girls from Toronto the same age as her and Taylor but they only had a few days together before they headed home. Marissa still managed to enjoy herself though. She spent lots of time in the pool with Daddy. She loved hunting for coconuts and little geckos. It was the mission of choice anytime we were walking around the grounds! In fact she collected 29 baby coconuts that had fallen to the ground and was determined to bring them home. We prepared her for the fact that they would likely be taken away at the airport by security, but they didn't, so she was super excited to bring them home. The tops are now getting some mold on them, so I'm not sure how that's going to go over when I tell her it's time to throw them out!! There was a spectacular water park on the property that Marissa enjoyed lots of time at, with Kids Club a couple times, and us a couple of times. Bizarre rules wouldn't let parents on the water slides, so she had to do that by herself. She loved going to the show at night, the highlight being the Michael Jackson show which was fantastic! I now have myself a little Michael Jackson fan, so much in fact that she wants to have a Michael Jackson birthday party next month! There was also a nice little mini golf course that she played at a few times. One night she got to dress up as one of Snow White's seven dwarfs to be part of the evening kids show. She made a very cute little dwarf! I think the most fun I witnessed Marissa have was playing and jumping in the waves on the beach. It still puts a big smile on my face to remember the pure joy on her face out there.

We were so happy to have Taylor with us on our winter vacation this year. The last winter holiday she came with us was three years ago, just before she started the Ketogenic Diet. Once she was on that there was no way we could bring her because we needed access to a kitchen, grocery store and a scale to weigh by the gram all the ingredients to prepare her meals. When she stopped eating and got her feeding tube, the possibility of going away with her was there because we only needed to be able to prepare ketogenic formula every night, and we could do that without a kitchen. But she wasn't stable enough for us to be comfortable taking her to the Caribbean. She's been so stable for a while now that we decided this winter the time was right. Travel days were challenging with a wheelchair and all the extra stuff we need to bring for her, but it was soooo worth it. She did so well and handled the heat with no trouble. Taylor loves the pool, so it was a joy to see her in the water every day for two weeks. She was so happy. So many smiles on her face during her pool time. And she loved being in the section where the jets were and feeling them push her. Her swimava neck ring gives her complete freedom to move her body in any direction it wants, it must be such a great feeling for her, the only time she has that complete freedom.

We spent much of our time by the pool every day, and enjoyed our down time. We did however take one excursion. It was on that day that Taylor got her first kiss from a boy, a 5 year old dolphin named Alex. Such a special memory! It was at Dolphin Explorer in Punta Cana. We went on the Funtastic option, where everyone in the group got a dolphin kiss, a dance, and lots of slippery touches. It was in the ocean, and there was a platform that we all stood along. Marissa was unexpectedly spooked by the water and all the little fish swimming around us that she completely refused to participate and sat on the dock above us the whole time. I'm still sad that she missed the special opportunity, especially because of her love of dolphins, but she did manage to touch Alex once at the very end. And she did experience the welcome kiss that we each got from a sea lion!

One morning we had one of the resort photographers take some photos of us and he captured some really nice shots...

Francis and I celebrated our 11th wedding anniversary while we were away. The family we met from Toronto had hired a babysitter one night from the resort and told us how wonderful she was, so they introduced us to her (Yuleyda from Butler Services) and she met the girls, and we had her watch the girls on our anniversary so that we could go out for dinner just the two of us. We went to the restaurant Don Pablo over in the Ambar section of the resort which is adults only and had a lovely dinner. Was nice to get out for the evening alone. Yuleyda (pronounced "Joolayda") was a sweetheart, she spoke English very well and loved the girls.

Enjoying our drink of choice, "Bahama Mama"

You can check out a few more pics on my Instagram feed here. Feels like we're still slowly settling in back home. Taylor's back on her regular routine of therapy/school during the week. Marissa went back to school on Tuesday. The laundry is nearly done. But the vacation memories are still fresh. Feeling happy and very, very grateful.

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...