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.
Friday, June 24, 2011
Monday, June 6, 2011
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!
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!
Friday, June 3, 2011
I Want a Pony!
What's that Taylor, you want a pony? We will get you a pony! A Snug Seat PONY Gait Trainer, that is :-)
We were at the hospital yesterday with our therapy team trying out walkers for Taylor. They brought in two different ones, the Pony and the Pacer. The initial goals for Taylor in a walker is to work on her head control and weight bearing through her legs. Once those are well established, the next goal will be to begin teaching her steps. We're a long way from that, but it's still pretty exciting to try something new and get our girl progressing!
We decided on the Pony over the Pacer for a few reasons. It's smaller, so it takes up less space, and maneuvering around the house will be easier. There's more room for her to grow with it. Our OT and PT were happy with her positioning in it, and she was able to hold on nicely to the handlebar. That was a surprise, because she typically will not hold onto anything that thick.
The Snug Seat Pony Gait Trainer supports a child in a vertical and upright standing position to begin walking movements even though the child is unable to put full weight on her legs or balance while standing. This gait trainer is designed for children with severe neuromuscular or developmental disabilities which would require the child to be completely supported in the upright position. The child can make reciprocal movements but does not have to be able to shift weight or have balance control. The Pony Gait Trainer enables children to experience new freedom of movement as they strengthen their physical development.
Our little kicker has some very strong legs on her and I'm super anxious to see what they can accomplish! Go Taylor go!
We were at the hospital yesterday with our therapy team trying out walkers for Taylor. They brought in two different ones, the Pony and the Pacer. The initial goals for Taylor in a walker is to work on her head control and weight bearing through her legs. Once those are well established, the next goal will be to begin teaching her steps. We're a long way from that, but it's still pretty exciting to try something new and get our girl progressing!
We decided on the Pony over the Pacer for a few reasons. It's smaller, so it takes up less space, and maneuvering around the house will be easier. There's more room for her to grow with it. Our OT and PT were happy with her positioning in it, and she was able to hold on nicely to the handlebar. That was a surprise, because she typically will not hold onto anything that thick.
The Snug Seat Pony Gait Trainer supports a child in a vertical and upright standing position to begin walking movements even though the child is unable to put full weight on her legs or balance while standing. This gait trainer is designed for children with severe neuromuscular or developmental disabilities which would require the child to be completely supported in the upright position. The child can make reciprocal movements but does not have to be able to shift weight or have balance control. The Pony Gait Trainer enables children to experience new freedom of movement as they strengthen their physical development.
Our little kicker has some very strong legs on her and I'm super anxious to see what they can accomplish! Go Taylor go!
Tuesday, May 31, 2011
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...
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.
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!
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 :-)
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| 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.
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| This was one of the two Kindergarten classrooms, possibly Marissa's! |
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| I really enjoyed the art on the walls that the kids have done, I think the painted circles are great! |
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| Does she look excited about this or what?!!! |
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| My girl is growing up :-) |
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| Ready for the real thing now! |
Saturday, May 28, 2011
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!
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!"
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 :-)
Loving all the new gadgets!
Happy weekend to you :-)
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| 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!"
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| 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 :-)
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| Ready for whatever weather comes our way! |
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| Changes angles easily and it folds down when you're not using it |
Happy weekend to you :-)
Monday, May 23, 2011
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.
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!
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.
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| Taylor looking as precious as only she can |
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| 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, May 13, 2011
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!
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!
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| See Taylor's hand holding onto the link?!!! |
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| 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!
Wednesday, May 4, 2011
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.
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.
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.
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| 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.
Monday, May 2, 2011
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.
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.
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.
![]() |
| 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 |
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.
Labels:
feeding,
good things,
marissa,
special needs,
taylor
Monday, April 25, 2011
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!
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!
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 :-)
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 :-)
Labels:
easter,
feeding,
good things,
marissa,
special needs,
taylor
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