The Rosie Sparkles Thread
May 9th 2017, 12:52 am
#46
Slightly Canadian
Joined: Jul 2005
Location: St. John's, Newfoundland
Posts: 10,129
May 9th 2017, 12:47 pm
#47
BE Enthusiast
Joined: Dec 2010
Location: Whitby, Ontario
Posts: 730
Re: The Rosie Sparkles Thread
Great update again - pleased to hear how she's progressing 😀
May 9th 2017, 3:32 pm
#48
Concierge
Thread Starter
Joined: Jun 2011
Location: Oakville, ON, CA
Posts: 8,320
Re: The Rosie Sparkles Thread
The video is AMAZING, seriously, SO impressive!
Here's the link: https://www.facebook.com/TheRosieSpa...1881812657108/
Here's the link: https://www.facebook.com/TheRosieSpa...1881812657108/
May 9th 2017, 3:35 pm
#49
SUPER MODERATOR
Joined: Dec 2005
Posts: 88,021
Re: The Rosie Sparkles Thread
The video is AMAZING, seriously, SO impressive!
Here's the link: https://www.facebook.com/TheRosieSpa...1881812657108/
Here's the link: https://www.facebook.com/TheRosieSpa...1881812657108/
May 29th 2017, 1:34 pm
#50
Concierge
Thread Starter
Joined: Jun 2011
Location: Oakville, ON, CA
Posts: 8,320
Re: The Rosie Sparkles Thread
Another update!
After a few weeks back at Bloorview, enjoying the weather and more of the outdoor spaces in the therapy garden, Rosie is off again to McMaster this week for a couple of minor procedures. It makes a big difference that we know we’ll only be there for a few days this time, so we haven’t had to pack everything up and ship it home from Bloorview; we have every confidence that we’ll be heading back by the end of the week. The most significant change that is planned this week is to remove the naso-gastric feeding tube, which Rosie hates, and instead put a “G-tube” in through the abdominal wall. It is only because there was so much other abdominal trauma that this wasn’t done in the first place – the surgical team strongly advised against making another hole in Rosie’s abdomen when nutritional requirements were first discussed late last year. Rosie is very excited about this procedure: having a feeding tube allows her to receive adequate nutrition and hydration without putting pressure on her still-suppressed appetite, while losing the nose-and-throat part of it may very well help to improve her enthusiasm for eating and drinking too.
One thing that won’t be on the agenda at Mac this time round is anything to do with kidney function. At a day-patient appointment last week, Rosie was given the all-clear by Dr DeMario, her urologist. He did comment that the repair he undertook had been one of the more complex challenges he had faced, but it appears to have been wholly successful and Rosie doesn’t have another urology appointment for a year and a bit.
In other news, there’s progress to report on sorting out Rosie’s long-term wheelchair. It’s been an interesting challenge to find a model that accommodates both the narrowness of her hips and the length of her legs. We think we’ve identified the right option, and look forward to completing the process, specifying colours, accessories and other options! Rosie also had the opportunity to test-drive an excellent “helper” motor drive for manual chairs, that communicates via Bluetooth with a controller on the wrist that looks a bit like a fitbit. It’s probably not necessary for everyday action around school and home, but for days out and dog walks it will give an extra dimension of freedom to Rosie’s ability to get around by herself.
It is, of course, important that Rosie develop wheelchair skills regardless of whether she has power-assistance. She continues to gain both technical skills and the confidence to apply them. The last couple of weeks have mostly been about kerbstones and wheelies: Rosie is now able to wheel along with the front wheels off the ground, get herself up small level changes, and lean back to rest on the anti-tip wheels. And she beat big brother handily in a one-on-one wheelchair basketball challenge when he came for a visit!
Another excitement to look forward to is an impending visit to Sunningdale (how very convenient that the Bloorview school board does not have the same PD days as the Halton board) to check the lay of the land. A great deal of work has already gone on behind the scenes, with both board and school staff involved in team meetings with Rosie’s occupational therapy and community resource specialists. She is so looking forward to getting back to “her” school after the summer break, and that remains a fixed point in the plan, even if other timings might move around a little.
Meanwhile, on the home front life is a social whirl for Rosie. At home on the weekends, there’s a steady stream of visitors to come and hang out – we even had to find another Wii controller for the epic multiplayer MarioKart battles that have been a feature of rainy mornings. And Rosie’s wonderful friends have been helping to explore the art of the possible with various birthday parties over the last few weeks, which have included escape rooms, bowling alleys and more!
Finally, we really need to say a few more thank yous. We really can’t adequately express how grateful we are to Rosie’s medical and paramedical teams, to the teachers and school staff, to family, friends and neighbours who have offered us kind thoughts and words and delicious meals; and especially to everyone from within and beyond the local community who has contributed to Rosie’s recovery through the many fundraisers that have taken place. We know we’re on a difficult journey, but it is made so much easier knowing that there’s a whole army of people out there willing us along the way.
Facebook post with some new pictures: https://www.facebook.com/TheRosieSpa...51644488347507
Such a great update, so pleased to hear of the progress, and that Rosie is quickly adjusting to her "new" normal. The visit back to Sunningdale will be really encouraging, and she must be loving her ability to be independent.
As always, sending much love, and I admire the love, strength, courage, and support that this family continues to show. 
After a few weeks back at Bloorview, enjoying the weather and more of the outdoor spaces in the therapy garden, Rosie is off again to McMaster this week for a couple of minor procedures. It makes a big difference that we know we’ll only be there for a few days this time, so we haven’t had to pack everything up and ship it home from Bloorview; we have every confidence that we’ll be heading back by the end of the week. The most significant change that is planned this week is to remove the naso-gastric feeding tube, which Rosie hates, and instead put a “G-tube” in through the abdominal wall. It is only because there was so much other abdominal trauma that this wasn’t done in the first place – the surgical team strongly advised against making another hole in Rosie’s abdomen when nutritional requirements were first discussed late last year. Rosie is very excited about this procedure: having a feeding tube allows her to receive adequate nutrition and hydration without putting pressure on her still-suppressed appetite, while losing the nose-and-throat part of it may very well help to improve her enthusiasm for eating and drinking too.
One thing that won’t be on the agenda at Mac this time round is anything to do with kidney function. At a day-patient appointment last week, Rosie was given the all-clear by Dr DeMario, her urologist. He did comment that the repair he undertook had been one of the more complex challenges he had faced, but it appears to have been wholly successful and Rosie doesn’t have another urology appointment for a year and a bit.
In other news, there’s progress to report on sorting out Rosie’s long-term wheelchair. It’s been an interesting challenge to find a model that accommodates both the narrowness of her hips and the length of her legs. We think we’ve identified the right option, and look forward to completing the process, specifying colours, accessories and other options! Rosie also had the opportunity to test-drive an excellent “helper” motor drive for manual chairs, that communicates via Bluetooth with a controller on the wrist that looks a bit like a fitbit. It’s probably not necessary for everyday action around school and home, but for days out and dog walks it will give an extra dimension of freedom to Rosie’s ability to get around by herself.
It is, of course, important that Rosie develop wheelchair skills regardless of whether she has power-assistance. She continues to gain both technical skills and the confidence to apply them. The last couple of weeks have mostly been about kerbstones and wheelies: Rosie is now able to wheel along with the front wheels off the ground, get herself up small level changes, and lean back to rest on the anti-tip wheels. And she beat big brother handily in a one-on-one wheelchair basketball challenge when he came for a visit!
Another excitement to look forward to is an impending visit to Sunningdale (how very convenient that the Bloorview school board does not have the same PD days as the Halton board) to check the lay of the land. A great deal of work has already gone on behind the scenes, with both board and school staff involved in team meetings with Rosie’s occupational therapy and community resource specialists. She is so looking forward to getting back to “her” school after the summer break, and that remains a fixed point in the plan, even if other timings might move around a little.
Meanwhile, on the home front life is a social whirl for Rosie. At home on the weekends, there’s a steady stream of visitors to come and hang out – we even had to find another Wii controller for the epic multiplayer MarioKart battles that have been a feature of rainy mornings. And Rosie’s wonderful friends have been helping to explore the art of the possible with various birthday parties over the last few weeks, which have included escape rooms, bowling alleys and more!
Finally, we really need to say a few more thank yous. We really can’t adequately express how grateful we are to Rosie’s medical and paramedical teams, to the teachers and school staff, to family, friends and neighbours who have offered us kind thoughts and words and delicious meals; and especially to everyone from within and beyond the local community who has contributed to Rosie’s recovery through the many fundraisers that have taken place. We know we’re on a difficult journey, but it is made so much easier knowing that there’s a whole army of people out there willing us along the way.
Facebook post with some new pictures: https://www.facebook.com/TheRosieSpa...51644488347507
Such a great update, so pleased to hear of the progress, and that Rosie is quickly adjusting to her "new" normal. The visit back to Sunningdale will be really encouraging, and she must be loving her ability to be independent.
As always, sending much love, and I admire the love, strength, courage, and support that this family continues to show.
May 29th 2017, 4:21 pm
#51
Concierge
Joined: May 2006
Location: ex ex-pat, in Taunton
Posts: 27,212
Re: The Rosie Sparkles Thread
Brilliant update, so glad she is getting better and more mobile.
she is really a
she is really a
May 30th 2017, 7:01 am
#52
Crazy Cat Lady
Joined: Apr 2004
Posts: 65,493
Re: The Rosie Sparkles Thread
Am wondering why this didn't show up on my newsfeed. All I've had the past few days are the auction details. And they've had some awesome auction items, hope they're making a fortune. The school sounds as though they're really trying to make things work well for Rosie. Great news all round.
May 30th 2017, 1:05 pm
#53
Concierge
Thread Starter
Joined: Jun 2011
Location: Oakville, ON, CA
Posts: 8,320
Re: The Rosie Sparkles Thread
Am wondering why this didn't show up on my newsfeed. All I've had the past few days are the auction details. And they've had some awesome auction items, hope they're making a fortune. The school sounds as though they're really trying to make things work well for Rosie. Great news all round.
May 30th 2017, 1:13 pm
#54
Crazy Cat Lady
Joined: Apr 2004
Posts: 65,493
Re: The Rosie Sparkles Thread
Jul 12th 2017, 2:36 pm
#55
Concierge
Thread Starter
Joined: Jun 2011
Location: Oakville, ON, CA
Posts: 8,320
Re: The Rosie Sparkles Thread
Late in sharing the latest update as we were away last week, so here it is:
Countdown to Home!
So, it’s official: Rosie’s stay at Bloorview ends in less than two weeks, on 14 July. We are in the midst of frantic works at home to get everything ready for the occasion. The carpet in Rosie’s bedroom space has been replaced with laminate floor, which is much more wheelchair-friendly. The mudroom and powder room have been torn down to make room for an accessible bathroom, which has had all the electrical and plumbing work done and is now in the process of being closed in again. So all the hats and coats and shoes and other paraphernalia of the boys’ active lives have been shipped to the bottom of the basement stairs – a bit inconvenient, but a workable (if hopelessly forlorn) solution to try and keep the main floor clutter-free and wheelchair-friendly. Even Tango has been affected – his food is now tantalizingly within olfactory reach in a cupboard in the kitchen, which drove him (even more) nuts for a couple of days until he realized he couldn’t get to it despite his best efforts.
And, importantly, the fabulous pink chandelier (so kindly donated back after the Original Six Line Pub’s fundraiser) is in pride of place on the ceiling of Rosie’s room!
The one remaining unknown is whether the ramp access to the front door will be completed in time for Rosie’s arrival. Because of the extraordinary spring weather in this part of the world, landscapers are way behind on their schedules, but our guys have assured us that, with a whole crew on the job, they can probably turn the whole thing around in a single day if they need to. It’ll make a huge difference to having Rosie at home if she can get in and out of the house by herself, so we’re really hoping the delays aren’t too severe.
Other aspects of rehabilitation are also progressing apace. Sunningdale is all geared up to welcome Rosie back into Grade 6 in the new school year: a meeting just before the end of term last week tied up a bunch of loose ends with respect to supporting Rosie’s physical and curriculum needs, and identifying how extracurricular events can best be accommodated. We have been hugely impressed with how the school, with superb support from the Board and other agencies, has risen to the challenge – even down to lending us some Phys Ed equipment over the summer so that Rosie can work in her own time on some of the adaptive techniques she will need, for example with a lacrosse stick, before she gets into the gym in September.
Speaking of phys ed equipment, Rosie also had the opportunity at Bloorview to try out a hockey sledge fitted with rollerblade wheels. We may have created a monster here: she’s now desperate to have a go in the real thing on the ice. Conveniently, there’s a sledge hockey team based at the arena just up the road from home, which I’m sure we will be visiting at some point in future!
We also spent some time in the last week going through the enormously complex order form for Rosie’s custom-fit wheelchair. She is currently in a chair supplied by Bloorview, which obviously has to be returned upon discharge. We learned a great deal about the amazing engineering that goes into apparently simple-looking technology such as a manual chair – there are umpteen different measurements and adjustments that are all designed to keep Rosie comfortable and secure, and able to wheel herself efficiently and with minimal risk of shoulder injury. It’s a high-tech machine, too, with a combination of various lightweight metal alloy castings and extrusions, plus some bits of Kevlar and carbon fibre. Everything is minutely adjustable, and in the model Rosie has chosen it has the capacity to be expanded as she grows. Crucially, though, it’s also pink and purple, which is after all the most important consideration.
Rosie has made a countdown calendar for her room, and is enthusiastically marking off the days until she comes home. It’s all very exciting!
Post with some pictures, including the sledge hockey, is here: https://www.facebook.com/TheRosieSpa...72501876261768
Such great news and so glad that Rosie will get to be home soon!
(Another post on the family's private page today showed that work is progressing on the ramp, so fingers crossed it'll be done on time!!)
Countdown to Home!
So, it’s official: Rosie’s stay at Bloorview ends in less than two weeks, on 14 July. We are in the midst of frantic works at home to get everything ready for the occasion. The carpet in Rosie’s bedroom space has been replaced with laminate floor, which is much more wheelchair-friendly. The mudroom and powder room have been torn down to make room for an accessible bathroom, which has had all the electrical and plumbing work done and is now in the process of being closed in again. So all the hats and coats and shoes and other paraphernalia of the boys’ active lives have been shipped to the bottom of the basement stairs – a bit inconvenient, but a workable (if hopelessly forlorn) solution to try and keep the main floor clutter-free and wheelchair-friendly. Even Tango has been affected – his food is now tantalizingly within olfactory reach in a cupboard in the kitchen, which drove him (even more) nuts for a couple of days until he realized he couldn’t get to it despite his best efforts.
And, importantly, the fabulous pink chandelier (so kindly donated back after the Original Six Line Pub’s fundraiser) is in pride of place on the ceiling of Rosie’s room!
The one remaining unknown is whether the ramp access to the front door will be completed in time for Rosie’s arrival. Because of the extraordinary spring weather in this part of the world, landscapers are way behind on their schedules, but our guys have assured us that, with a whole crew on the job, they can probably turn the whole thing around in a single day if they need to. It’ll make a huge difference to having Rosie at home if she can get in and out of the house by herself, so we’re really hoping the delays aren’t too severe.
Other aspects of rehabilitation are also progressing apace. Sunningdale is all geared up to welcome Rosie back into Grade 6 in the new school year: a meeting just before the end of term last week tied up a bunch of loose ends with respect to supporting Rosie’s physical and curriculum needs, and identifying how extracurricular events can best be accommodated. We have been hugely impressed with how the school, with superb support from the Board and other agencies, has risen to the challenge – even down to lending us some Phys Ed equipment over the summer so that Rosie can work in her own time on some of the adaptive techniques she will need, for example with a lacrosse stick, before she gets into the gym in September.
Speaking of phys ed equipment, Rosie also had the opportunity at Bloorview to try out a hockey sledge fitted with rollerblade wheels. We may have created a monster here: she’s now desperate to have a go in the real thing on the ice. Conveniently, there’s a sledge hockey team based at the arena just up the road from home, which I’m sure we will be visiting at some point in future!
We also spent some time in the last week going through the enormously complex order form for Rosie’s custom-fit wheelchair. She is currently in a chair supplied by Bloorview, which obviously has to be returned upon discharge. We learned a great deal about the amazing engineering that goes into apparently simple-looking technology such as a manual chair – there are umpteen different measurements and adjustments that are all designed to keep Rosie comfortable and secure, and able to wheel herself efficiently and with minimal risk of shoulder injury. It’s a high-tech machine, too, with a combination of various lightweight metal alloy castings and extrusions, plus some bits of Kevlar and carbon fibre. Everything is minutely adjustable, and in the model Rosie has chosen it has the capacity to be expanded as she grows. Crucially, though, it’s also pink and purple, which is after all the most important consideration.
Rosie has made a countdown calendar for her room, and is enthusiastically marking off the days until she comes home. It’s all very exciting!
Post with some pictures, including the sledge hockey, is here: https://www.facebook.com/TheRosieSpa...72501876261768
Such great news and so glad that Rosie will get to be home soon!
(Another post on the family's private page today showed that work is progressing on the ramp, so fingers crossed it'll be done on time!!)
Jul 12th 2017, 2:47 pm
#56
SUPER MODERATOR
Joined: Dec 2005
Posts: 88,021
Re: The Rosie Sparkles Thread
Absolutely fantastic news...all the family will be together once again. 
Thanks for the update Schnooks.
Thanks for the update Schnooks.
Jul 12th 2017, 3:09 pm
#57
BE Forum Addict
Joined: Feb 2014
Posts: 1,338
Re: The Rosie Sparkles Thread
Thanks for posting this update, as I have Facebook turned off for the summer. IT is impossible not to be impressed everytime I read about Rosie and her family.
Jul 13th 2017, 6:50 am
#59
Concierge
Joined: Jan 2013
Location: Western Australia
Posts: 21,139
Re: The Rosie Sparkles Thread
This is wonderful news. No matter how good hospitals/rehab centres are, they're not home.
Love the sound of Rosie's wheelchair, and yes, the colour is the most important thing!
The technology that goes into them is amazing, even the cushions to avoid pressure areas are custom made with the help of computers.
Sledge hockey - uh oh! Sounds like the Sparkles family will be on the weekend sports runs for Rosie sooner rather than later
Thanks for the update Schnooks. It's lovely to know that Rosie will be home (tomorrow!), and to a home that's been adapted with her independence in mind. What a great job the Sparkles family are doing
Love the sound of Rosie's wheelchair, and yes, the colour is the most important thing!
The technology that goes into them is amazing, even the cushions to avoid pressure areas are custom made with the help of computers.Sledge hockey - uh oh! Sounds like the Sparkles family will be on the weekend sports runs for Rosie sooner rather than later
Thanks for the update Schnooks. It's lovely to know that Rosie will be home (tomorrow!), and to a home that's been adapted with her independence in mind. What a great job the Sparkles family are doing
Jul 13th 2017, 7:06 am
#60
Cup of tea, Father?
Joined: Oct 2004
Location: Underground, overground, wombling free
Posts: 6,895
Re: The Rosie Sparkles Thread
Great news! I was thinking of the family this week, when I came across a journal article authored by a few people from Bloorview (probably spelt wrong, sorry). Fingers crossed it's a smooth transition home.