Around The Corner

Marissa is Kindergarten bound come September. We're all pretty excited about it around here. Unfortunately we don't have a school in Auburn Bay, so the kids in our community will be going to Andrew Sibbald in Bonavista. I've heard good things about the school. They had a Parent Orientation night recently, Francis and I went and were very impressed. They talked about the curriculum and how they teach it, we even met the teachers. After listening to them talk about the school and curriculum we got a tour of the school. Even sat down at a table in the Kindergarten classroom. As you come in the main doors of the school there is this great welcome sign...

I love that it's made of handprints of all the students!

Man has school changed since I was little! There are no longer rows of individual desks in elementary school. In Kindergarten, they focus on play and use various learning centres. As children play, they are clarifying information, integrating ideas from previous experiences, and exploring and experimenting with their environment. Play gives children opportunities to add to their knowledge, learn new skills and practice familiar ones. Through play, children learn to deal with their feelings, interact with others and resolve conflicts. They develop their imagination, creativity and ability to solve problems. Play is a valuable and important way for children to learn. It provides the opportunity for active learning and for children to master skills that will be used later in more formal study. Learning centres give children the opportunity to explore and discover, and take responsibility for selecting and completing a variety of activities.

This was one of the two Kindergarten classrooms, possibly Marissa's!

I really enjoyed the art on the walls that the kids have done, I think the painted circles are great!

Because the school isn't in our community, the kids will be riding a bus. Seems crazy to Francis and myself, we both walked to school every day from Kindergarten all the way through Grade 12. Marissa's not having a hard time digesting that though, in fact she's thrilled that she gets to ride a school bus! I think it makes her feel pretty grown up. She had an exciting weekend, because we went to the My 1st Ride program on Saturday. It's a collaborative safety initiative between school bus carriers and school boards to provide young elementary children and their parents information about safe school busing practices. We watched a powerpoint presentation outlining service expectations as well as the responsibilities of students and parents. There was a school bus safety video for the children, followed by a formal ride on a school bus. Definitely the highlight of the whole thing! It was great, all the kids lined up and got on the bus all by themselves. Then they invited the parents on board and we sat behind all the kids. After a few blocks the bus pulled over and had the parents get off. Then the kids went for a 5 minute ride on their own. When the bus returned to pick us up, the kids got to leave the bus and find their parent. Then we all boarded once again, kids first, parents next, and returned to the school. Marissa loved it!

Does she look excited about this or what?!!!

My girl is growing up :-)

Ready for the real thing now!

Coming up in June is student orientation at Andrew Sibbald. Marissa's been over to her new school and played at the playground, but she's never been inside. She's pretty excited to go and see her Kindergarten classroom! Fingers crossed that her enthusiasm towards school continues through the years :-)

Gadgets

Taylor loves to swing, and we've been trying to figure out something that we could pull off in the house. Francis ordered a hanging chair and stand from Costco online a few weeks ago. The chair is really made for an adult, so we also bought a hammock type swing to use with the stand, we thought it would work better for Taylor. She's been in hammock swings before and has enjoyed them. So we got the stand set up and let Taylor give it a try!

We rigged up some toys in front of her to encourage her to reach, but clearly she was just in there for some R&R!

It seemed to work a little better with her blue tumbleform seat inside, without it she tends to poke out through the holes...not that she seemed to mind though! Once Francis got the hanging chair put together and hung, the shape of it ended up accommodating the tumbleform perfectly. And Taylor's loving it. Supergirl is now swinging regularly, in the comfort of her own home! How great is that. And when she starts to slow down, her little legs start kicking, as if to say... "Hey guys, I need a push!"

I love the top left shot...little lady of leisure...legs crossed and off to one side!

We had a pool therapy session last Friday. Francis hasn't been to any of our pool sessions yet, so having the day off was the perfect opportunity for him to check it out! I sat this one out and let Daddy have his time in the water with Taylor. The pool at Children's Hospital is amazing. Warm as a bath, super clean changing rooms, and they wrap you in warm blankets as you get out. Spa treatment. Makes going to the rec centre pretty grim! One of the moms there had this amazing little device that went around her son's neck which allowed him to float and move independently in the water. She let us give it a try with Taylor. It was amazing. Supergirl was floating and moving around freely, without anyone holding her!!!! We so need to get one of our own, it's called the Swimava, check it out...

We've been struggling to find some kind of umbrella holder for Taylor's wheelchair. Not so much for rain, but to be able to give shade in the summer when we're outside. Most strollers have some sort of canopy that protects little ones from the sun, but the wheelchair is wide open to the elements. We finally found one online (Paraplis umbrella holder) that would work for the size of tubing on Taylor's chair. Only one glitch, no shipping to Canada. So frustrating! Thankfully our friends in San Jose were kind enough to let us have it shipped to them, then they shipped it here. Thanks so much Minouche and Patrick for your help! And it works like a charm :-)

Ready for whatever weather comes our way!

Changes angles easily and it folds down when you're not using it

Loving all the new gadgets!
Happy weekend to you :-)

Gardening Angel

Today was kinda dull and drizzly, a PJ day around here. But the rest of the weekend was so much nicer than the original forecast of rain, rain, and oh...more rain. May Long Weekend has a history of not-so-sunny-weather in Calgary but we did see sunshine this year and had lots of time outside!

Taylor enjoyed some fresh air and a snooze in her highchair under the beach umbrella. Marissa had fun chasing bubbles, chasing Koko, and playing in the yard.

Taylor looking as precious as only she can

I wish I could bottle up some of Marissa's energy and use it for myself!!

A green thumb I am not. But I do love having flowers planted for the summer. It just brightens up the yard and makes it look so pretty. I have to admit that I hate the planting part, and it's all I can manage just to remember to water. If I'm being real here, I just don't like getting dirty. But Mom does. Yesterday was what is affectionately (or sarcastically?!) known as the Annual Planting for the Princess. Yep, she did the dirty work for me. And I am so very grateful. Honestly, everything she does for me, for us, for the girls, and this too...seriously, she is amazing. Thank you Mom! xoxoxo

I saw this idea on another blog I was reading this week and just had to steal it! I have Marissa's outgrown rain boots that were painted by Grandma Marny. Now I know why I couldn't throw them out, they have another purpose! Flower pots, the cutest flower pots you've ever seen...

I've got a bunch of stuff to catch up on but it will have to wait until the next post, so stay tuned!

Friday the 13th

Decided to go to the Calgary Farmer's Market this afternoon, hadn't been yet since it re-opened after their move. So the girls and I headed down to check it out. We had a bite to eat when we got there, then Marissa played for a while in the play area. While Marissa was playing I hooked up Taylor's feed. She was sitting there in her wheelchair, and grabbed hold of her links a few times. Supergirl was using her hands, yay for Taylor. After Marissa was played out I took her over to the face painter to get done up. She wanted to be Tinkerbell, I wondered how the woman was going to pull that off, but in the end it looked great! Green, flowers, curly lines, and sparkles...or was it pixie dust? Of course it was!

See Taylor's hand holding onto the link?!!!

Sweet and Sparkly

After that we wondered through the market and I enjoyed the nice wide aisles, great for those of us pushing wheelchairs. We picked up a couple things, then decided to leave and head to a park with swings. Taylor's feed wasn't quite finished so I put the feeding back over my arm, undid the seatbelt on her wheelchair and lifted her out of it and into the carseat. Suddenly Taylor was screaming and I was mortified to discover that the tubing must have been caught somewhere on the chair and her g-tube was pulled out. Stomach contents and feed pouring out of the open hole in Taylor's tummy as she screamed her poor heart out. Insert extreme panic as I realize...

I. Don't. Have. The. Emergency. Kit. With. Me.

The one they explicitly told me to never leave home without. I left home without it. Trying to hold it together, but totally freaking out, I hurl the wheelchair into the back of the van and peel out of the parking lot. We're 15 minutes away from home. The way the stomach muscles are layered, the hole can close up very quickly, so I'm terrified, and speeding like a bat-outta-hell down Deerfoot. Marissa in the backseat going "weeeeee, this is fun". As we turn into Auburn Bay I tell her I'm going to need her help as soon as we get in the house. We run in and I wash the g-tube, deflate the balloon, and get a syringe ready with 5ml water to re-inflate it once it's back in. I throw it all in a cup and tell Marissa to take it upstairs and wait there for me while I get Taylor. I run back to the van, unbuckle her, run upstairs and put her on the floor. I wash up her stomach and it already looks like the hole is blocked. Marissa held her legs still and I was able to get the tube back in, but had to push it in with more force than I expected, Taylor screaming bloody murder again. As soon as it was done I immediately burst into tears. Marissa gave me the biggest tightest hug in the world. Then I checked placement to make sure that it indeed went straight down into her stomach and not through some gap into her abdomen. When I drew back on the syringe I got stomach contents...thank goodness. If I didn't we would have had to go to the hospital for a dye test to confirm placement.

Friday the 13th be gone...I don't need your drama!

Pulled the Plug

So, yesterday was the day, the plug was pulled! We headed in to Surgery Clinic for our follow up with Dr. Sigalet since Taylor's g-tube surgery on March 7th. He was very pleased with how the site looked, and said it's healed very nicely. Next step was literally to pull the plug, he had to remove the first-line g-tube and then replace it with a skin level device. I was somewhat torn about this appointment. I had been anxiously awaiting it as it would mean that there would no longer be a tube dangling out of Taylor's belly. But on the flip side, as the appointment got closer I started to dread it because of how bad it was going to be for Taylor when he pulled it out. Much to my surprise, the worst part was the freezing. He put the needle in 5 spots around the site on Taylor's belly and she was in serious distress. You know that awful hold-your-breath cry, followed by big screams and tears flowing. Poor little darling. Then he waited a minute for the freezing to kick in, counted to three, and pulled the tube out. Here's a picture of it (cleaned up), the rounded mushroom cap is the part that was inside, up against the wall of the stomach, and the oblong bolster is what was on the outside against her skin, with the tube dangling out. The mushroom cap is fairly soft plastic, but it still had to come out a hole the size of the tubing. Ouch.

As quickly as the tube was out, the measuring device was put in so that they could determine the size of MIC-KEY that Taylor needed (skin-level g-tube).

The next photo shows what the measuring device looks like. They put the tubing down the hole in Taylor's belly. Then, using one of the ports at the other end they inject water, and the end that is in Taylor's stomach fills up like a balloon. It is then pulled up so that the balloon is right up against her stomach wall, and on the outside, they push the white disk down until it is a dime's width away from her skin. The ruler markings on the tubing told them that the size she needed was 1.5cm.

Measuring device

I was able to get a quick photo of the hole in Taylor's belly when they pulled the measuring device out. It's not pretty, that's for sure, but it's not as stomach churning as I expected it to be.

The MIC-KEY g-tube is also a balloon device. So in it went, and water was injected in the special port to fill the balloon right away and secure the tube.

They cleaned her up and put some gauze around the site to soak up any more blood that may seep over the next 24 hours. Here it is, Taylor's new button...

Teaching wasn't too complicated. Only change to the way we hook up her feeds is the addition of a connector that locks onto the button, and the feeding bag hooks into the new connector. We were also taught how to vent if Taylor's got a lot of gas in her belly, there's a separate connector for that, then you just attach an empty 60cc syringe and let the gas bubbles out.

Once a week we have to clean the button of any formula buildup. We inject 1ml of club soda every minute for 10 minutes, and the bubbles do the work. Pretty simple.

Once a week we also need to check the balloon. We put an empty syringe on the balloon port and draw the water out of the balloon, keeping one hand firmly on the button so that it doesn't come out! Then we take a second syringe with 5ml water in it, attach it to the balloon port and inject the water to refill the balloon. The reason for this is that the balloons do fail over time, and if we notice that we aren't getting the 5ml out of the balloon anymore, it's likely time to replace the button.

And next time we do it ourselves. Yes, we will remove the button, see the open hole into her stomach, put in a new one and inflate the balloon. These MIC-KEY devices generally last about 8 months, so it's not like we have to change it very regularly. Good grief, yet another thing that is shocking to think we have to do ourselves. But we will...because we're capable. Who would have thought?! Oh the things we have learned!

Teaching, tube change, and all...we were in and out of Surgery Clinic within an hour. Nice and quick. We got home and in no time Taylor rolled onto her tummy. Wow. This girl continues to amaze me. Tube-just-pulled-out-blood-everywhere-screaming-in-pain and she's already comfortable enough to be on her tummy. Supergirl indeed. Mommy's so proud.

Sprunshine!

That's right...sprunshine...the perfect blend of spring finally appearing and warm rays of sunshine pouring down! Gotta love it! Patio furniture on deck, flowers bought and ready to plant, hoses out, lawn raked, trees budding, flip flops on, sprinkler ready to be run through, and BBQ back in business.

Pinwheel held up to the sky with one hand, camera in the other...I just LOVE these two shots!

Marissa loves her time in the tub. I walked by the bathroom as the tub was filling up and saw her leaning in to take a drink so I grabbed the camera and caught the next sip...

We hung out in the backyard together on Sunday afternoon. Perfect family afternoon. Beautiful sunshine. Dog outside where nobody had to worry if she was going to squat on the floor. Daddy raking. Marissa gardening. Taylor feeding in her highchair. Me clicking pictures. Oh yes, mustn't forget...baby suntanning...

Our first week with Koko has been fun. Working hard to get her into a routine. She's a lively little one...that is when she's not being carted around by Marissa who is absolutely smitten. She can zip around the yard like a little firecracker. I think she's going to be very trainable, she catches on really quickly. Responded to her name in no time. Housebreaking however is challenging for Koko's breed. So having an adorable 3 pound puppy comes with the not-so-adorable little piddles and poops around the house. Luckily a 3 pound dog leaves just little messes to deal with. So training will be quite the project around here for the next while. Wish us luck. Koko is definitely Marissa's dog...but her and Taylor managed to sneak in a nap curled up together, so sweet.

They looked so sweet all curled up together!

Marissa put Koko in the play train and turned it on so that she could go for a ride...oh did we laugh!!

My favourite shot of little Miss Koko resting outside in the sunshine

Taylor's doing well. As of today, she's drinking one and a half bottles a day by mouth! Supergirl is sure making huge strides with her feeding. We have to thicken the fluid she drinks orally to minimize her aspiration risks, and the thickener has been a bit hard on her little system. Things sort of stopped moving if ya know what I mean. But she had a good poop today and hopefully she's adjusting to it.

She's finally managing to stay on her tummy a bit now that the g-tube site has healed up. Tomorrow might change that, but hopefully not for too long. We're off to the surgeon's office to have the first line g-tube device taken out (NOT looking forward to that - they literally have to pull the plug out of the little hole), and then having her skin level device put in. It will sure be nice to not have a tube hanging out. I'm sure once the tenderness of tomorrow's trauma passes, it will be much more comfortable for her to get back to some productive tummy time.