Good Things, Grand Finale

It's been a week chock full of good stuff...

Taylor's been doing really well drinking 60mL out of a bottle once a day. Last Monday we got adventurous, we doubled it! And whadya know...Supergirl downed it...all 120mL!!!!!!!! Shar was feeding her, I was there, and JoAnn from Pace was over for a home visit. Three witnesses all cheering like crazy with excitement. When Shar took the bottle out of her mouth, Taylor had a bit of a smirk on her face, kinda like she was sayin' "Ha! And you didn't think I could do it!" We were all cheering and praising her like crazy in high-pitched squealy voices and suddenly she busted out this gigantic full mouth smile! It was amazing. Like she was as proud of herself as we were. Absolutely precious. It was so fast I couldn't catch it with the camera, but it's etched in my mind, that's for sure.

The girls' cousin Jeff was over the other day playing with Marissa, they had her barbies lined up on blocks on the floor in the playroom. They were doing push-ups at the gym! Of course they were, what else do Barbies do?! Marissa loves it when Jeff comes over, he loves it too, they're special friends those two.

Apparently there's group of church ladies who make quilts for the Rotary Flames House. On our last visit they sent us home with one for Taylor. It has a patch on the corner, stitched by the lovely lady from Rotary South who made it. Wherever you are Doreen, we thank you!

It's really hard to find footed sleepers in toddler sizes, they're so much better on Taylor than the two-piece separates. I do have a bunch, but they all have zippers, and that poses a bit of a problem when it comes to the g-tube. When she's hooked up to a feed I have to have the sleeper halfway unzipped. So I thought I'd take them to an alteration place and have a button hole put in each one to create an access hole to the g-tube. Great idea right? Well, I took them in and they were going to charge $11 per sleeper. You've got to be kidding me, that's more than the price of the sleepers. So I brought them home, where they have been sitting on the railing ever since. Francis' parents were here for a visit last week and I was telling my mother-in-law the story. She told me I could do those by hand in no time. I'm like, yeah right! I'll just add that to the mile-long list of things in my procrastination pile! Grada insisted it was easy, asked me for a needle and thread and a scrap of fabric, and proceeded to showed me how to hand sew a buttonhole stitch. I think Francis was smirking under his breath 'cause he knew the likelihood of me following through was pretty slim! So I decided to buck up and off I went to the store, got me some embroidery thread and needles. On Thursday night I sat down in my comfy chair, cut a slit in each of the sleepers and started stitching. And I am proud to say I did it, and if I do say so myself, they look pretty damn good! Thank you Grada...Francis thanks you too 'cause you saved him $66!

My six masterpieces!

I had respite one afternoon, so off I went to tackle some errands and enjoy some alone time. Along my way I ended up at the Children's Place in the CrossIron Mills outlet mall. And I struck gold. Marissa is just about out of all of her shoes...the 10's are getting pretty tight, nearly ready for 11's. I got her four pairs of shoes for under $30! Followed by three pairs of sparkly flip-flops at Superstore for $12. Seriously...7 pairs of shoes for forty-two bucks?? Wish I could get myself 7 pairs of shoes for $42, chance of that happening is not bloody likely!

We got a Dakota chair for Taylor (like the ones at Rotary Flames House). It's a thing of beauty, and the ultimate in comfort and safety. It's a supportive bean bag chair, with a safety harness, made in Calgary to boot! It can be pushed right back allowing her to chill out and/or sleep all cradled in, or it can be brought all the way forward so that she is supported in an upright position. Or any angle in between, all without any pressure points. It's so nice to have another seating option in the house to get Taylor up off the floor.

Of course Marissa and I got to do some egg colouring as Easter was approaching. She coloured the eggs first with the magic crayon, dropped them into mugs of pretty coloured dye, then fetched them out once they reached the perfect shade. I drew some swirls on one of the eggs with the magic crayon and when Marissa scooped it out of the mug she complimented me on how beautiful my egg was. Why thank you dear!

You're never too old to do this!

Easter weekend was a busy one. We had respite on Friday night, so after a full day with the girls, Francis and I went out to see a movie...Limitless. It was good. Saturday morning Marissa had gymnastics, then it was off to her friend Sam's birthday party, and finally back home to make a nice supper. Mom joined us and showed up with arms full. A basket of sweets for Marissa, flowers for me, and an absolutely darling swarovski necklace that she made for Taylor (to match last year's bracelet)! Thank you so much Mom, you're too good to us. Before bed that night Francis and I were busy doing up the girls' Easter baskets and laid out the trail of carrot clues that Marissa would follow the next morning. Sunday morning was really fun, I loved watching Marissa's animated reaction to each clue that lead her closer and closer to the big basket waiting for her at the end of the hunt. And she was just as anxious to open Taylor's basket and show her each little treasure that was inside. We didn't do chocolate since Taylor can't have any and Marissa doesn't need any, instead opted for an array of little things they would each enjoy. Following the Easter bunny excitement, we left on an exciting errand (that you'll read about next), then we were off to dinner at Grandma & Grandpa's. Marny has made her signature rainboots for all the grandkids, and to my delight yesterday Taylor got her very own pair! She may not be able to puddle jump in them, but she'll sure rock the look while being pushed through the rain in her wheelchair, thank you Marny! Marissa always enjoys time with her cousins Megan & Jilli, the threesome were busy little girls whipping up no shortage of Easter crafts last night.

And now...for the grand finale...drumroll please...

We. Got. A. Puppy. She's the most adorable little Maltese/Yorkie cross ("Morkie") you have ever seen! Allow me introduce you to Koko...

You may or may not know that we used to have a dog. A beautiful yellow lab named Bailey. Bailey was a bundle of extreme energy and at a certain point in time we just couldn't seem to keep up with what he needed from us in time and intense exercise. As a result, he started to become destructive and very sad. We felt the best and kindest thing for Bailey would be to find him a new home where he could get what he needed. We did find him a great one, we met the lovely couple who lived directly across the street from an open field where they would be running him several times a day. We did go over a few months afterwards to visit and could see that we made the right choice for him. Every time I see a yellow lab though, I still feel a twinge of guilt for the commitment we failed to keep. We loved him so very much, and made sure he went to a good home, but at the end of the day...we did let him down.

We were certainly in no hurry for another pet after we let Bailey go. It's been a few years now. And this was not a decision we made lightly. I think we both knew there would eventually be a dog in our future, we just didn't know when that would be. We have talked about what the right circumstances would have to be in order for us to get a dog, because it is a commitment that we are absolutely 100% dedicated to honoring second time around. The dog would have to be small and not require alot of exercise. It would have to be non-shedding because of my allergies. It would have to be playful and non-aggressive. While we weren't actively looking for a dog, we knew very clearly what we wanted in one. So when the right dog happened to come along, we made the decision. She is a small dog indeed, will be only 6 or 7 pounds full grown! She's a very low shedding dog, frequently chosen by allergy sufferers. And she's playful indeed. We spent a good chunk of time in the bonding room with her on Friday. Marissa was totally taken with her, had her up and down over and over, gave her tonnes of little cuddles and squeezes, played with her...and she took it all in stride. No sign at all of even a hint of aggression. She could handle Marissa, no small feat! All our requirements were met, Taylor was okay with her, I was not a stuffed-up mess, and we were unanimously taken with her. So Easter Sunday found us back at the pet store picking up our sweet little Koko! I think this is going to make a really positive impact on Marissa too, she'll have a real loyal playmate in Koko.

Well that's the end of one big post! I'll wrap this up with an 'outtake' cause it's too silly not to include :-)

Project Runway

Saturday, April 16th was the 8th Annual Pacekids Fashion Show Gala & Auction Fundraiser. The vision at Pacekids is to provide quality education and therapeutic services for children with special needs. They have grown significantly in recent years, doubling the number of children they serve as a result of two new programs. Through this event, they raise the funds necessary to operate the school and its programs, so that our beautiful Taylor and all of the other very special students have the opportunity to realize their potential. Their goal this year was to raise $50,000.

What makes the fashion show part of the evening so special is that the kids from Pace are the models, along with their siblings. So that meant Taylor and Marissa got to be runway models for a night! There was plenty of primping that afternoon getting ready for the event. First up and long overdue was a haircut for Taylor at Beaners. I french braided Marissa's hair and painted her nails. Granny made beautiful pearl jewellery for the girls, including a freshwater pearl binky clip for Taylor...outstanding!

The jewels

The shoes

The gowns

The fashion show was wonderful. Of course my favourite part was seeing my girls all gussied up, but the kids were all great. They were in wheelchairs, walkers, braces...all with proud siblings by their side. Beautiful. Emotional. Funny. Funny with respect to Marissa anyways! I suppose a room full of grown ups staring at you is kinda intimidating and can bring out shyness in little ones. Marissa's 'shy' takes the form of her playing with her tongue. It sticks out, rolls around, eyes down like she's all embarrassed. Funny girl indeed. Cause once you know her she's so far from shy! As the girls were approaching our table I got up to take some photos. To my horror when I clicked the button for the first time, nothing happened. At that very moment I could see the memory card sitting on my desk at home. I'm still sick about it. No photos. Luckily there was a photographer there for the evening doing candids of the fashion show, and taking family photos afterwards. So, thanks to Illusions Photography, here's a couple...

Thank you Sharlene for escorting my little darlings and taking care of them for the evening!

Our family shot

Dinner was a really great buffet with so many choices. I realized halfway through the line that I had taken up far too much space on my plate with salad and barely had enough room for the good stuff!

The auctioneer for the evening was Jon Montgomery, Canadian gold medal winner for Men's Skeleton at the 2010 Olympics in Vancouver. Seems like an odd roll for an Olympian, but his career is actually as a car salesman and auctioneer. He totally made the auction, he kept things going and was lots of fun. Man, can he talk fast!!

We had a really nice evening. Joining us at our table was Mom & Bryan, Kim & Martin, Debbie & Jonathan. Thank you guys so much for coming and supporting Pace, it means so much. To us, and to so many amazing families. And a big thank you to Taylor's aide Sharlene, she escorted the girls for the fashion show, took them home, looked after them and put them to bed so that we could enjoy our night at the event.

I love this shot that Illusions took of one of the tables from up above

W.E.M.

What does that stand for...West Edmonton Mall...and we took it by storm! Packed into two days as much fun as we possibly could. It's been over a week since we got back but it's taken me this much time to get through all the pictures. I must admit 492 photos in two-and-a-half days is a bit on the high side, but I am pleased to report that after editing I've whittled it down to a much more reasonable number...212. Reasonable for me anyways! Don't worry, I won't post them all, just some collages of my favourites that capture the memories we made there with Marissa. This weekend was for her. Fun time with Mommy and Daddy. Taylor needs so much of my time, we wanted a special weekend that was just for Marissa, to have Mommy & Daddy's dedicated time. So we took Taylor to Rotary Flames House where she was in very capable hands, and headed north with our big girl for some special Marissa time.

When we walked into the hotel lobby, I guess it looked pretty grand to a 5-year-old, she gasped..."It's so beautiful". It was pretty cute. Our room was wonderful, it had a separate seating area so that we could hang out after Marissa went to sleep at night. The room was huge. And there was a fantastic jetted jacuzzi too! We got to the hotel around supper time, so we dropped off our bags, walked through the mall a bit and then found somewhere to eat. Ended up at Mr. Mikes. Marissa was a bit owly after being cooped up in the car for 3 hours, so dinner was challenging and we got outta there pretty quick. Back to the room, and Marissa wanted to have a bath in the huge tub. So we filled it up (which took an eternity) complete with bubbles and jets, and the girl had an absolute BALL!

It was a late night for the monkey, she crashed pretty quick and was up early the next morning. Eager to start the fun! So we all got ready, got our Starbucks, and headed off to play mini-golf!

She had a ball the first 7 holes. It was hilarious to watch her golf. As much as we tried to teach her how to hold the club and hit, she was more into whacking it around like she was playing hockey. By hole 8 she lost interest, so Daddy and I continued on our own and she ran around asking (many times) when we were going to be done! 'Cause she knew what was next, and it was certainly more appealing...

Does she look excited??!!!!

The waterpark was a huge hit, to say the least. Girl had a blast. Huge water-spraying-play-structure, waterslides, wave pool, hot tubs...it was all so much fun. She was on cloud nine! Even made a little friend when we were sitting in the hot tub. Her name was Missy. They would go off together holding hands to the orange waterslide, then they'd come back for a bit, then they'd run over to the play structure, and back again. Marissa kept forgetting her name, she'd say to me..."Mommy is it Sweetie or Darling?" I'd say, no it's Missy. Then they'd go off again and Marissa would come back and ask me if it was Honey or Sweetie. I'd tell her again it was Missy. "Oh yeah!" she'd exclaim. Funny girl. When it was time to go they gave each other a big hug. I sure hope she always makes friends that easily.

Before and after photo-editing. I was going for an artistic look with this one, I think it looks cool.

I think she looks like a model shooting a swim suit issue!

Marissa was done by about 4 in the afternoon, just as they were opening up more advanced slides. So her and I left Daddy there on his own for another hour to go play on the "big boy" slides. He had a blast. We met him at 5 and headed back to our room to drop off our swimming stuff and get ready for dinner. Marissa loves her dresses, so I let her get all gussied up, jewellery and all!

We went to Cactus Club and she was an absolute angel. We had a great time at dinner with our incredibly well behaved little darling. They didn't have a kids menu, so we ordered her a small caesar salad. She didn't want any chicken on it, just the salad...but with extra croutons 'cause they're her favourite. Snuck some of our yam fries too, and she was a happy camper. Then it was off to the movies. We went to see Hop, a new animated movie about the Easter Bunny.

It was adorable, and Marissa loved it...laughed out loud throughout the whole thing, so cute. That made it another late night, up way past her usual 7:30 bedtime. When the movie ended and the credits started to roll, Marissa squealed..."Yay, I get to go to bed now!" It was hilarious.

The next morning we all slept in a bit which was nice, then Marissa played in the tub while I got ready for the day. We checked out, put all our stuff in the van, then came back in to start our last day at the mall. First up...bowling at Ed's!

Bowling was a bit of a miss. Marissa wasn't up to par for this activity, and whined through most of it for her blankie, which was in the van. She perked up towards the end thankfully so that we could carry on with our last day of fun at WEM.

We grabbed a quick lunch at Wok Box (yummy by the way), before heading on to the next adventure...

Next to the Waterpark, Galaxyland was definitely the second highlight of the trip for Marissa. She had so much fun. And as for the rides, the faster they were, the better she like them! Just like her Mommy. I think we did the red roller coaster 7 times. She'd laugh and scream and throw her hands in the air. What a riot! I loved watching her on the mini race track too, because she actually drove the car all by herself...controlled the gas and everything...and she thought that was pretty cool.

Last up before we hit the road back home was a special treat at Marble Slab...

Yummalicious was the word she used! And she managed to eat the whole thing as the camera clicked away and I enjoyed my own delicious mound of chocolate-mixed-with-Skor concoction in a waffle cone. Yummalicious indeed!

The weekend was a success, mission accomplished! Great memories...a good time was had by all! Life is good :-)

Talent

A huge shout out to my sister tonight! Jaime, you do so many little projects for me, and I am so grateful that you're always willing and excited to do yet another for me and whip up something fabulous in no time. You have great talent in doing what you do, and you love doing it. Can it get any better than that?! My blog officially has a header now...and isn't it lovely everyone??!!! Thanks babe, I love it. Graphic Designer Extraordinaire! People have always told me that I'm creative, but if you saw Jaime's photography and design work, you'd be way impressed. You go girl, I'm your #1 fan!

What else am I enjoying tonight?

Marissa and I sat down at the island together to make an Easter Bunny house! Thought they just sold kits for gingerbread houses at Christmastime? Apparently now Easter warrants a pretty little candy decorated house too. I had Marissa's attention for about 10 minutes, she placed a few candies, then bailed on me to play with playdough. So I sat quietly decorating the Easter house, and rather enjoyed myself...

Love my cup full of Sharpies, one in every colour...

Those Sharpies helped me craft some quick but cute thank you cards for all the littles who came to Marissa's birthday party...

And I'm loving that it's the weekend. Francis had a crumby week, home sick for three days, and feeling lousy again when he got home today. But he's going to kick it this weekend. He has to. We're taking Taylor to Rotary House on Sunday, then heading to West Edmonton Mall for a few days with Marissa. Family fun time with our big girl...water park, amusement park, maybe some bowling, a movie...as long as it promises fun, we'll be doin' it!

Last but not least, the song playing in the background. Hope you're enjoying it too. There definitely is Beauty In The World people, so shake your booties boys and girls!

Burnt

Houston, we have a problem. Two words...granulation tissue. What is that you ask?? Well it's one of four types of skin issues that can arise when you have a g-tube. It just so happens to be the grossest one. It is very common and treatable. It grows directly around the gastrostomy hole and looks raised, red and may ooze fluid or bleed easily. It basically looks like stomach is coming out of the hole. Granulation tissue should be treated when it first appears. It first showed up last week, so off we went to see the Home Nutrition nurse at Children's for our teaching session on how to treat it at home. It's not nice...you pretty much burn it off using silver nitrate sticks. First you paint the healthy skin all around the g-tube with vaseline to protect it. Then you use what looks like a long match stick (silver nitrate) and touch the tip of it to the granulation tissue. This causes a chemical reaction, the tissue turns grey right away (as it starts to burn), and eventually becomes black. The treatment can be repeated every 3 days until the treated tissue dries up and falls off. Treatment is complete when this occurs.

Treatment supplies

Granulation tissue - before treatment

Granulation tissue - grey in colour immediately after treatment

Taylor's first treatment was last Wednesday by the Home Nutrition nurse, it dried up and fell off the next day. Unfortunately it's back, and we had to treat it today. I hope this isn't going to be a regular thing. It's quite awful to have Taylor screaming in pain and know that you're the one inflicting it.

While we're on the g-tube topic...

We asked Marissa what she'd think about having a doll with a g-tube that she could feed just like Taylor does (I saw this idea on a tube feeding website). She was crazy excited about this idea and surgery couldn't take place fast enough! Marissa selected which doll she wanted to have surgery, geared up in her hospital scrubs, put on a mask and with assistance from Daddy and his power drill, surgery was a success! We didn't have a spare g-tube to use, but we managed to get our hands on a foley catheter. Don't ask how...we are sworn to secrecy. It is a balloon device much like the g-tube. After the hole was drilled, Marissa inserted the tube and used a syringe with 10mL of water to inflate the balloon so that it can't be pulled out. Dr. Dengis was very thorough...she scrubbed in, wore a mask, made sure the environment was sterile, checked the baby's blood pressure and heart rate, and had the very best bedside manner once surgery was complete and baby was in recovery. What a riot! Anyways, Marissa is beside herself with her special new doll, and has affectionately named her Taylor. She's proudly showing 'Taylor' off to everyone, including her friends at preschool this morning!

Enjoyed coffee with my friend Carol on Friday morning while the little ones played. Marissa and Liam managed to escape being captured by the camera. Taylor, Annika and Emmett, however, couldn't hide from the paparazzi. Emmett is nine months now and commando crawls across the room faster than a speeding bullet! He's the happiest little guy and so darn cute. Taylor and Annika kept very close together on the floor as they always do, little kindred spirits they are...

Well, that's a wrap, night all!

Be Aware

I'm going to share a post with you that I recently read by Kelle Hampton, a blogger I follow enthusiastically, whose youngest daughter has Down Syndrome. When I read her post on World Down Syndrome Awareness Day, what she said really resonated with me. While most of the following words are Kelle's, they are also very, very much mine.

Having a child with special needs, I am consequently more sensitive to degrading words people use—words like retarded. I’ve used it in the past—not purposefully meant to degrade, of course—but in passing when I’ve done something without thinking. Or in referring to something completely ridiculous. It’s amazing how many times I’ve heard this word since Taylor's journey began—usually thrown out in the same way, not meant to demean anyone, and it has taken me awhile to figure out how I feel about it. Obviously, yes, it’s a word that is used frequently to degrade people with disabilities and for this reason, it shouldn’t be a part of someone’s vocabulary as a silly way to refer to yourself when you’ve mindlessly attempted something. There are campaigns within the special needs community to end this word, and I join them because I support this cause not only for my child, but for others’ as well. But the word exists, not only as a demeaning term, but as a medical expression too. And I am informed of what it really means—before society notoriously went and made a mess of it. With that said, the word “retarded” means slow or limited in intellectual or emotional development.

My point is, throwing out “the R-word” is usually done in ignorance, and the fact that the word used inappropriately is meant to refer to a lack of intelligence is well, ironic. So, I guess this is all suffice to say, out of kindness and respect for everyone and the way this word is degradingly used, please remove the existence of this word from your vocabulary and teach your children to do the same.

Pay attention to the person, the child, the soul—not the wheelchair, the difference. Allow yourself to be astonished—to learn something new from someone, to be inspired, to laugh, to enjoy a moment. And then pass it on. Spread your awareness message by the way you live, the way you speak and the way you treat people.

I know what it feels like to be the mother of a special needs child, and it is in that role that I have felt fueled to advocate more fiercely for her rights. Sometimes it takes wearing the shoes or wondering what it would be like to wear the shoes of a tsunami victim, a mother with cancer, a soldier's wife, or the parent of a child with a special need to force us to be more compassionate. A child must understand the concept of "self" before he learns to share; so it is a person must wonder what it would feel like to personally experience something to be truly altruistic. I hope that reading this blog has perhaps allowed you to feel the challenges and joys of raising a child with special needs. And, in doing so, I hope you are more aware of every individual's capabilities and maybe, your own as well. Thank you again for reading, for sharing, for being part of our journey.