The Rosie Sparkles Thread
 

So, with the latest update (below), I thought it would be nice to start a new thread with a more positive title. :) I will continue to post updates from Facebook or that I receive from Doug.

So that it's in the top post, here are some relevant links to follow Rosie's recovery and to donate to The Rosie Sparkles Fund:
Facebook: https://www.facebook.com/TheRosieSparklesFund/?fref=ts (no account required to view)
GoFundMe: https://www.gofundme.com/the-rosie-sparkles-fund

For those just seeing this for the first time, here is the link to the previous thread: http://britishexpats.com/forum/maple...illian-888547/

And now for the latest update:

Goodbye Hamilton, hello Toronto!

The day finally arrived on Monday 13 February for Rosie to move to the Holland Bloorview Kids Rehabilitation Hospital. An early start at McMaster saw her room all packed up and Rosie in a patient-transfer ambulance just after 8 o’clock, for the long trip through rush-hour traffic to midtown Toronto. She spent most of the ambulance journey fast asleep!

Bloorview is a wonderful place, if a bit overwhelming for Rosie to begin with. After finding her new digs, most of the rest of Monday was taken up with introductions to all sorts of new people: her primary nursing people, physio and occupational therapists, the specialist OT team who deal with seating, play therapist, Child Life specialist, social worker, psychologist, and from the medical team the doctor, nurse practitioner and pharmacist. She’s now registered with the Bloorview School Authority and will be starting school as soon as everything’s settled down (although she was happy to learn that Friday is a PA day at Bloorview and Monday is a public holiday, so she starts her school schedule with a four-day weekend!)

During her first week, apart from school and therapy sessions, Rosie will learn the lie of the land and will hopefully find some kindred spirits either through school or in some of the after-school activities. She is understandably a bit fed up with “grown-ups pretending to be my friend” – to the extent that goodbyes at McMaster were accompanied by some fairly heartfelt “I wish I’d never had to meet you” comments! Although, of course, in time she will come to appreciate (as the grown-ups do already) just how fabulous the staff at McMaster all are, and how ultimately lucky we were that Rosie was able to go there for the immediate medical treatment needs that they have dealt with so well. #therosiesparklesfund

Some pictures were included with the Facebook post: https://www.facebook.com/TheRosieSpa...97704930408130

Re: The Rosie Sparkles Thread
 

Pleased to hear she is now out of the hospital and into rehab, she'll soon adapt, and a four day weekend will help :lol:

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I was wondering if everything had gone to plan this week...looks like it has.

What an enormous step for Rosie's rehabilitation. :thumbsup:

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Excellent news.

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Indeed it is.

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So glad she's well enough to start the next phase.

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Great news..

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Getting the notification that there's an update to her FB page always makes me smile. Happy to see the new thread here as well. Rosie's a champ. I'm sure she's being a horrible child at times ;) but the improvements and the smiling photos are great to see and read about. :thumb:

Re: The Rosie Sparkles Thread
 

Great news. ☺

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I'm sure her parents are a little bit relieved if she is being a "horrible child" at times . Normal behaviour is a really positive sign :):thumbsup:

This thread and updates make me happy

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That's what I thought. :lol:

Re: The Rosie Sparkles Thread
 

It's been awhile, but the family has just made another update on Rosie!

Rosie at Bloorview

Nearly three weeks into the Bloorview experience, there is a lot to report. Having arrived on Monday 13 February, Rosie’s first week was mostly spent in assessments and getting-to-know-you sessions, which was exhausting but worthwhile. She met medical and therapeutic staff from many different disciplines, many starting with “P” - from physicians and pharmacists to physiotherapists and psychologists! Rosie was a bit worried to begin with that with all the tests and assessments there wasn’t any time for actual rehabilitation, but once she’d worked out that this was all to make sure that the rehab therapy she received was designed to exactly suit her needs, she was much happier.

The programme at Bloorview strongly encourages visits home at weekends, so with the first weekend of Rosie’s stay being the Family Day weekend, we were all keen to work out when and how she could come home. Rosie’s not quite ready to come home for an overnight visit yet, but the big breakthrough for day-trips home came with Rosie being passed fit to travel in our own car, rather than needing a wheelchair taxi. So it was with great glee that she came home for a few hours on each of the three days of the long weekend, and coped admirably both with the car journey and with being carried up the front steps into the house. It was lovely, too, to have a few of Rosie’s friends round to hang out for a while, and have a go at some of the amazing crafts and games Rosie has been given over the last few months.

Tuesday 21 saw the start of full-time school. The school day at Bloorview is similar to any other school, with the exception that they expect pupils to be hauled out of classes fairly regularly for therapy sessions, so the teachers work really hard to ensure that everyone covers all the necessary curriculum. And now that “proper” therapy sessions also got under way, the week of testing and assessment all suddenly became more worthwhile: the seating & mobility specialists have configured a wheelchair that Rosie is very confident in manouevring, to the point that Ka-Kei, her physiotherapist, is already teaching Rosie how to pull a wheelie!

Since Rosie will be at Bloorview for a few months, it’s really reassuring that the routine has got off to such a good start. A full timetable during the week, with lots of sports and extracurriculars (basketball and baking have been two favourites so far) has kept Rosie busy, and she has certainly slept well. Never a morning person at the best of times, Rosie’s nurses have discovered that they need to work quite hard to wake her up and get her going in the mornings!

The busy weeks have meant Rosie has been ready to come home and relax for a few hours at the weekend. But we’re beginning to get a bit more adventurous with the relaxing bits as well: last weekend we ventured to the cinema to see the Lego Batman movie (it was lovely, actually, to be able to go to the film.ca theatre where Rosie’s fundraiser was held just after Christmas). And this weekend Rosie was invited to a launch party/video shoot for a new single by Abby & Sarah, twelve-year-old twins who wrote “Sister I’m Running,” which has been adopted by the Canadian Women’s Foundation as a strong and powerful song celebrating their #girlpowered campaign. Getting up into the freight elevator from the loading dock in Graffiti Alley behind Queen St West in Toronto (where Rick Mercer films the “rant” section for the Mercer Report) was exciting, to say the least, and is an indication of how different people have different ideas about what “accessible” means!

We really weren’t quite sure what to expect from Bloorview (apart, of course, from a tedious daily commute from Oakville). Once again, we have been really impressed with the friendliness and dedication of the staff, and by the way everyone has welcomed Rosie and made all of us feel this is absolutely the best possible place for her to be. The facilities are amazing, the programming is more than enough to keep everyone busy, and we are sure that by the time Rosie is ready to return home she will have got the best possible preparation for being once more an independent and strong-willed girl!

Facebook link which includes a number of pictures (no account required to view): https://www.facebook.com/TheRosieSpa...06430706202219

Re: The Rosie Sparkles Thread
 

Greayt update, so good to see just how well she is doing..:thumbsup:

Re: The Rosie Sparkles Thread
 

Thanks for the update Schnooks.

What an amazing young lady Rosie is. She always has a lovely smile on her beautiful face.

Way to go Rosie!!! :thumbsup::thumbsup::thumbsup:

Re: The Rosie Sparkles Thread
 

Thanks for posting the update to BE.

What an amazing family they all are and Rosie certainly has a huge bagful of sparkles inside of herself.

Onwards ho. Hopefully rehab will go smoothly and progress well and soon the family will all be home together.

Re: The Rosie Sparkles Thread
 

great news

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So pleased to hear that Rosie is settling into rehab well. She sounds like she's making amazing progress. ☺

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To Doug and family, I can't tell you how lovely it is to see these smiling and busy photos of you daughter.

Though phenomenally life changing circumstances have brought you all to this place, your love and her spirit and the tons of people and hours of amazing support around you will, I am pretty sure, bring Rosie to a happy place you never thought possible a couple of months ago.

You are all often in my thoughts. We all have daily challenges and "shouting at the sky" moments and mine don't even begin to compare.

Ps: sympathies on the commuting - that can be truly draining. Take care out there!

Re: The Rosie Sparkles Thread
 

We managed to get Rosie home for a night last weekend, for the first time since her accident. Here's the latest update on the Facebook page https://www.facebook.com/TheRosieSpa...998318678791:0

Home for a night!

March break didn't have the most auspicious of starts for Rosie: a bit of over enthusiastic physiotherapy just before the opening weekend resulted in a damaged and very sore rotator cuff in her left shoulder, which of course makes getting around in a chair rather difficult. And then there was a tummy bug, too, which meant Rosie didn't feel up to accompanying the rest of the family for a trip up the CN Tower on the Thursday.

But all changed on the second weekend: Rosie was passed fit to stay at home overnight on Saturday! We moved some furniture around to make a workable bedroom in what was the dining room, and although she doesn't have access to a bathroom on the main floor (the powder room isn't big enough to get a wheelchair in) it is just about OK for a weekend. Rosie spent her first night at home - and the first night that all five of us have been in the same place - for 132 nights!

This was a big milestone, and although it has of course brought home to us just how far there is to go, it was also an opportunity to celebrate how far we have all come, especially how much hard work and effort Rosie has put into her rehabilitation.

With another trip to McMaster planned for next week to draw a line under another medical issue, and progress in all sorts of directions in rehab, we are looking forward to having Rosie at home for Saturday (and potentially also Friday) nights most weekends from now on. Tango is certainly looking forward to that - he more or less took up residence on somebody's bed last weekend!

Re: The Rosie Sparkles Thread
 

Ahhhh another wonderful update! So pleased to hear that she is doing well, and that she's getting to spend more time at home! Hopefully that shoulder doesn't bother her much more. I love reading about her progress, her determination, and generally the outpouring of love and support around her. :wub: Keep up the fantastic work, Rosie and family! <3

Re: The Rosie Sparkles Thread
 

I am so very, very pleased Rosie has been able to stay in her own home...what a milestone for everyone in the family. It must have been wonderful for your beautiful daughter to be home again.

Re: The Rosie Sparkles Thread
 

Having Rosie home for the night must have been absolutely wonderful, there is no better feeling than knowing your kids are safely asleep in their beds at home and you haven't had that for a long time. I love the guilty expression on Tango's face, "I suspect I shouldn't be here, but I also suspect that they aren't going to do anything about it"

Re: The Rosie Sparkles Thread
 

Thanks for the update

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Lovely. Just lovely.

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Wonderful update :)

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Sorry to hear about the setbacks, but they do happen and, at least, she has spent a weekend at home now, so it's onward and upward, and she seems such a resilient person.

Re: The Rosie Sparkles Thread
 

I'm reluctant to post this on this thread, but a young (24 year old) daughter of one of our French cousins got rear-ended by a truck after her car broke down on the road from Caen to Ouistreham, where her parents live.

This was three weeks ago and she's still in a coma. There are a few positive signs, but not many.

I just wanted to get that off my chest.

Re: The Rosie Sparkles Thread
 

That's dreadful, sympathies to all the family. :(

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Another fantastic update just went up on the Facebook page!!

Things that are no longer a thing…

A few weeks ago, just before Rosie left McMaster Children’s Hospital, she had surgery to repair some damage to one of her kidneys. This week it was time to head back across town to Mac Kids to have it all checked out and, with luck, have the stent removed that was supporting the repair. That gave Rosie and her team an opportunity for some other important progress: it was decided to remove her feeding tube a few days before the Mac visit, to see how she did without it – so that, if Rosie struggled without it, a new one could be placed while she was in theatre for the other procedure.

Good news on both counts! Rosie, always with an eye for the gruesome, asked if she could pull the dreaded tube out herself. Its removal immediately made swallowing much less uncomfortable, which in turn makes it all the easier to eat and drink enough not to need the tube back in. And having established that there would be no need to replace the NJ tube, the kidney procedure (performed as day surgery) also went well and everything is working as it should be.

Those two bits of progress, taken together, led to Rosie being given a two-night pass for the weekend – we hope this will become the pattern from now on while she’s still an inpatient at Bloorview. It was lovely to have her home for the whole weekend! There are certainly still some challenges we will face until the modifications to the house are under way, not least of which is that it’s an awkward struggle to manipulate a wheelchair through the sliding door onto the deck. It was certainly worth that struggle, though, to be able to hang out in the sunshine and play ball games with her brothers. We look forward to more of the same as the weather continues to improve; we saw at least one crocus in bloom in the front yard so that must mean that Spring has officially sprung! #therosiesparklesfund

https://www.facebook.com/TheRosieSpa...21852794660010 (includes some gorgeous photos of Rosie and her brothers!)

Such a happy update to read on a Monday morning!!! :D So proud of you, Rosie!!!

Re: The Rosie Sparkles Thread
 

Brilliant!! :thumbsup:

Way to go Rosie Sparkles. :thumbsup::thumbsup:

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Brought a huge smile to my face when I read that this morning. She's looking great.

Re: The Rosie Sparkles Thread
 

Great news, and she looks so happy in those photos. :thumbsup::thumbsup:

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She must be so happy to have the feeding tube out at last. Great update!:thumbsup:

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Of pitstops and possibilities

It has been a mixed couple of weeks for Rosie at Bloorview. She has made tremendous progress in physio sessions, can now transfer from chair to bed with almost no help (and occasionally with no help at all), and has begun to build friendships among her fellow rehab patients. School continues to be both an excellent way to incorporate therapy into everyday living skills, and a great outlet for Rosie’s creativity – she has apparently produced some wonderful writing, though parents have not yet had reading privileges fully instated!

In other significant ways, though, it’s been a frustrating period. Rosie has continued to lose weight she can ill afford; consistently high calcium levels (which amongst other effects, can inhibit appetite and induce lethargy) have not been helping and do not seem to be correcting themselves naturally, as had been hoped. So on Tuesday 18 April Rosie is heading back to McMaster for a while, where the hypercalcemia can be treated more aggressively and the endocrinology team, who have been monitoring Rosie’s progress from afar, can be more immediately involved in trying to fix the issue. We don’t know at this stage how long she’ll be back at Mac, but we’ve effectively checked out of Bloorview until Rosie’s body chemistry is stable enough to make best use of the time she has there. We are assured that, when she is ready to return to full-time rehabilitation, she will have both the constitution and the energy to progress even more rapidly than she has done so far. The treatment plan will be worked out in the next few days; we do know that it will involve re-introducing a feeding tube, which Rosie is not happy about but understands why it’s necessary in the short term. And we are all looking forward to seeing some old friends at Mac – Rosie is far enough removed now from her time in the ICU that she is keen to go and say hi again, as a visitor this time!

Meanwhile, the interregnum coinciding with a long weekend has meant having Rosie at home for five nights in a row. That has been absolutely lovely, despite Rosie’s lack of energy and painfully small appetite. The boys have been very good about giving her privacy in her curtained-off bedroom space in the dining room when she asks for it; Rosie has been equally good about inviting the boys to join her in movies and video games (we moved a TV and the games machine into her temporary bedroom). And of course, with the improving weather, it has been wonderful for Rosie to be able to hang out with her neighbourhood friends in the fresh air.

Since the 2017 Formula 1 season is now well under way, we’ve decided that the (hopefully fairly short) stay back at McMaster is not a backwards step, nor even a sideways one, but more of a pitstop: an opportunity to sort out one or two niggling issues with body chemistry, take on some really good nutrition, and come back out onto the rehabilitation track stronger and more energetic than before.

https://m.facebook.com/story.php?sto...08&ref=m_notif

Re: The Rosie Sparkles Thread
 

This young lady amazes me every step of the way. She has personality, courage and strength of character, a strong family unit and great medical care. Hang in there Rosie, I hope your pit stop won't be too long, keep that engine revving. :)
P

Re: The Rosie Sparkles Thread
 

Although I have only met Doug...this family never ceases to amaze me. :blink: What a family!!! Doug's determination and resolve must spread throughout the whole family. Their glass is not just full...it's positively brimming over.

It's great to hear Rosie was able to stay home with her family for the long Easter weekend. Sorry to hear that she's back at McMasters...but as usual you are managing to turn it into a positive and she will be able to catch up with old friends.

Onwards and upward Rosie...onwards and upwards. :thumbsup:

Re: The Rosie Sparkles Thread
 

It sounds like Rosie's made some great progress at Bloorview. Fingers crossed that the pitstop is short and gets her back on track quickly. :)

Re: The Rosie Sparkles Thread
 

Another Facebook update this morning!

Rosie Sparkles update, 7 May 2017

Today marks six months since Rosie’s accident. What a journey we have all been on: what enormous progress Rosie has made, and what a long way there is still to go! Once again we are overawed with the medical teams at both McMaster and at Bloorview (not forgetting the occasional foray into Sick Kids) who have managed the ups and downs, the backs and forths, of the last half a year with consummate professionalism, compassion and encouragement.

Exactly two weeks after being re-admitted to McMaster, Rosie was discharged back to Bloorview last Tuesday. Yet another session of packing up a hospital room, schlepping everything across town and unpacking in a different hospital. This time, though, the nurses at Bloorview managed to arrange things so that Rosie has her same room back again – the biggest difference is that the view out of the window is now much greener than it was just before Easter!

Everyone is happy to see Rosie back. Just before she left, the whole school took part in a “design your inspirational T-shirt” exercise, and we learned within minutes of arriving back that there was to be an assembly for everyone to show off their designs in a sort of fashion show. Rosie was able to join in (delaying lunch in favour of heading to the gym), which was a great opportunity for everyone at Bloorview School to say hello and welcome back. The teal hair was suitably admired, nobody paid the slightest attention to the feeding tube, and all was well with the world.

So far, it seems the treatment at Mac has achieved what it was supposed to. Endocrinology are pleased with calcium levels; other minerals remain more or less where they should be and can be managed mostly through diet (in fact, Rosie’s now being encouraged to drink plenty of milk and eat dairy foods to ensure that her calcium level doesn’t swing too far in the other direction…). The dieticians and gastrointestinal medicine specialists are happy with Rosie’s calorific intake, and the balance between eating normally and being tube-fed is ensuring she gets consistent nutrition even when she may not feel like eating too much. Importantly, the combination of better chemistry and better nutrition has meant that Rosie has much more energy and enthusiasm for all her various activities, and has already been working on new techniques in physiotherapy. Transitions and transfers, while not yet exactly second nature, are becoming more manageable for Rosie as she gains confidence in her wheelchair skills. And she dribbles a mean basketball, too.

At home for the weekend, Rosie was very enthusiastic about heading down to Oakville to watch the Oakville Children’s Choir’s end-of-season concert. Not only did both her brothers put in superb performances with A Few Good Men and AFGM In Training, but Rosie was able to head backstage after the concert and spend some time with the girls of the Intermediate Choir, who have been hugely supportive over the last six months and are looking forward to having Rosie back in their ranks when the new season starts up again in September – almost as much as Rosie is looking forward to joining in again!

The last six months have been full to overflowing with trauma, drama, and challenges for the whole family. While none of this will ever be easy, here’s hoping that the next six months will bring steady progress for everyone as we work to get Rosie home and learn to adjust to being all under the same roof once again! #therosiesparklesfund

Facebook link: https://www.facebook.com/TheRosieSpa...41488489363107

Re: The Rosie Sparkles Thread
 

What a remarkable young lady. What a remarkable family.

:wub:

Re: The Rosie Sparkles Thread
 

Fantastic update, and so pleased she is making good progress.