Adaptive Bike

Two years ago we tried an accessible bike at an Accessibility Expo. Stella loved it but it was very expensive, and Myles had rigged our old chariot with a car seat, so we were managing. Well many spinal lengthening later, the car seat no longer fits Stella, and we are definitely not legal, nor safe, so we re-visited the adaptive bike.

The bike is amazing as it will accommodate Stella into adulthood. It also gives her a much nicer view than staring at our backs!

If you are interested in helping us make this happen for Stella, here is the link, we are hoping to have this for summer so we can continue to have biking adventures and maybe a few trips to get ice cream! 🙂

 

Health Canada approves Spinraza!!!!

On June 30th around noon we got the fantastic news that Health Canada has approved Spinraza for treatment of all types of SMA. This is such great news, and we were thrilled with the full approval across all types as this has been a problem in other countries in regards to access. To read the full press release click here.

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As we were at the SMA Conference we had a toast of champagne with some of the other Canadian families.

There is still a significant number of steps to proceed through before any patients begin to get dosed. We are told it could be 1-2 years still. So mixed emotions of happiness/relief and continued anxiety/frustration. But a step in the right direction. Below is a flowchart of the process to follow.

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Advocacy

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If you get a chance, check out the July 2017 edition of Maclean’s Magazine. We contributed to a short article about Spinraza and advocating for Health Canada to approve it as the first treatment for SMA patients.

Team Stella!

Hello Team Stella!
We apologize for the late email but its been a very busy spring!
Stella turned 7!!!! in April, and then had her 3rd spinal surgery to lengthen the rods they placed back in September. We have also had a significant number of doctor appointments to address Stella’s complex needs. We saw Neurology to discuss the upcoming Health Canada decision on (hopefully this June/July) approving Spinraza (the first ever SMA treatment), and to see what timelines and other steps are next before we might expect to see dosing. The farther we get into this, we realize, there are still lots of unanswered questions. Our new expectation is maybe next winter 2018 if all goes well. We also had an Orthopedic checkup which confirmed her rods are working well to correct her scoliosis and the incision has healed nicely. We also had a Respiratory check up where Stella stunned them with her transformation of 10lb, and 6 inches of growth since they haven’t seen her since last summer. They were very impressed with how the rods have helped her respiratory health as well by opening up her chest and allowing her diaphragm to function more normally. We have also been having lots of new wheelchair trials and fittings as we prepare for getting Stella a new power wheelchair. This chair we are hoping will allow Stella more control in adjusting herself for comfort as well as allow her to stand!

Our summer is also looking very busy with a trip to Florida for the annual SMA conference, SMA family camp in Montreal, and our first time at Easter Seals Family camp in London! We haven’t been to the conference for four years, but with the amazing medical breakthroughs happening in the USA we are eager to hear from the experts as well as the families who are apart of the trials. We will be driving our van down at the end of June and staying for a few days afterwards to hopefully get a day or two at the parks.

Because we expect it to take us a full three days of travel and of the tight deadline we don’t think we will be able to make it to the annual Rebecca Run on Saturday July 8th at Fairy Lake in Newmarket. We just wanted everyone to be aware. We hate to disappoint our loyal team members, but would love it if you still wanted to go and represent! The link for the registration is here: www.rebeccarun.com/run-registration.html Please choose “Team Stella” and note that the registration cost goes up on June 11th. You can pick up your Canada 150 red race shirt the morning before the run, but there is no race-day registration. The 5Km walk/run begins at 9am, the kids 1Km fun run (free!) at 10am, and the 3Km walk/roll/run at 10:15. Race registration includes a hotdog lunch afterwards.
In lieu of the of the Rebecca Run, school friends of Stella have generously offered to hold a Stella Run for us in Mississauga on Saturday June 24th at 9am. We are fundraising for our portion of Stella’s new powerchair. This new chair will see Stella through the next five years of her life. We are trying to give her more independence as well accommodate her growing needs. The governments ADP program generously covers a significant portion of the basic chair, however there are additional functions she needs for safety, comfort, and independence. The total cost of this chair is over $50,000. If you would be interested in participating in this run/walk/roll please email mrs.denne@gmail.com for more information to register. We have also made a Facebook event that you are welcome to share.

Thank you again for your continued support! We couldn’t do this without you! Go Team Stella!!!

XO The Bartlett Family

Spring!

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We are enjoying the (finally!!!) warmer weather. It seems to have taken longer this year, but we are enjoying walks with Arthur as well as time in the backyard, and lots of swings once again! Stella has made a full recovery. She was back at school a week after her back surgery and even performed in her school musical! Her wound is looking great, and the last of her steri-strips covering her dissolving stitches has finally fallen off, so she is cleared for baths, and swimming!!! Perfect timing!!!

Spinal Surgery: Rod Distraction

We had Stella’s first spinal rod lengthening – called a distraction. We were pretty unsure how the whole process, especially recovery would go as we don’t know many other families with the type of rods Stella has. Most of the older SMA “kids” waited till they were older and just had spinal fusions that is a one-off surgery. And most kids in the U.S. have the option of a new magnetic type of rod that doesn’t require surgery to lengthen, instead it is done externally, with magnets, and done in a doctors office.

I took the day before off as its quite the production to get her packed. We have to bring almost all our own machines – bipap, cough assist, plus clothes and entertainment for a few days.

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We were pre-admitted the day before as usual to start TPN and lipids before her surgery as Stella cannot fast. Since this was our third time on the Ortho ward, everything went super smoothly. We got our room, IV started without too much fuss, and settled in. We managed to get a decent night sleep despite the noise and interruptions. Even with our ear plugs and white noise machine 🙂

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Early the next morning Myles arrived, and they brought her down to the OR. He always does the hand over and goes in with her until she’s out. This is when I lose it. I hate to have her out of my care. I hate the lack of control of the situation. And I hate how hard this is on her. And that this and will be an ongoing part of her life. They told us to expect her back in 4 hours.

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Its hard to keep our minds off her, but we grabbed some breakfast and then tried to grab a quick nap back on the couch/single bed in her room back up on the Ortho floor. We are lucky that they have been able to keep this for us in the past, otherwise we become “homeless” and the parent accommodations down in surgery/PICU are terrible. Its become my little superstition, but I always wear my Never Give Up gear on surgery days. It helps me keep my spirits up, and feel like I’m doing something. Even when I can’t.

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She was out a little earlier than expected. Her surgeon said she did great and that they were able to grow her rods 10mm. He expects they will do this again in 9 months or so. When we were allowed back to PICU they already had her extubated and on her bipap! This was a huge shock and relief as it is normally a couple of days before we even think about this with Stella. This was due to the shorter surgical time, as well as the lung capacity and overall straightening benefits of the previous surgery. She was alert and wanted to be entertained so we obliged her with some Youtube and a couple games of Heads Up. She did had a little barf, but attributed it to the morphine. We decided to switch to Tylenol if possible and see how it goes. By Dinner time she was feeling even better, and her sats were stable so we took the bipap off and she did great! We were amazed at her rapid recovery!!!

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Dad stayed with her overnight (the worst in PICU with only a chair to “sleep”in) and the next day while I went to work. They had a great day and since she was at her baseline for using bipap (only overnight) and has resumed her feeds and was tolerating her usual daily calories (continuous not bolus) they were able to move back up to her room on Ortho. We were thrilled! She got to FaceTime her brother and the dog back home as well as her whole class who she misses terribly! This is way faster than we had expected and are so pleased!

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Dad did the next night too and very much appreciated the parent bed up on the ward. He pushed hard the next day since she was at home feeds, bipap and managing the pain with minimal medication he asked to be released. They initially resisted, saying they had booked us for a week. However, Myles was able to pull in the head nurse practitioner who knows us, and she agreed, that because of our history, we’d be fine to continue care at home.

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So TWO days after surgery she was home! The only hiccup in the plan was that we had cancelled our in-home nursing wile we were admitted and because we were home so much earlier than expected had to manage without any nursing all weekend overnight. That okay, mom and dad are happy to at least be in our own beds, even if we aren’t getting much sleep! 😉

She just has to take it easy for a few days, no baths, and hopefully she’ll be back to school for at least 1/2 days next week. Maybe sooner knowing our girl!

 

Happy Birthday Stella Bella!!

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You are rainbows and mermaids and helium balloons. You are turquoise and supergirl and icecream with sprinkles. You are dance parties and swing rides and movies nights with popcorn. You are the best big sister and a loyal friend and you make your mom and dad proud everyday. You are happy and kind and we love you so. We are so glad you’re ours and we can’t believe you are lucky number seven! We are the lucky ones!
Happy Birthday Stella Bella!!!

Some pictures from her Supergirl themed party. Its currently Stella’s favourite show and we can’t wait till the next season is released on Netflix! We had pizza, friends, a photo booth and lots of fun!

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