Stella and I had our big appointment at Bloorview this week.

We were immediately blown away by the facilities and what a wonderful purpose-built building it was. Located in north/east toronto it is the largest children’s rehabilitation hospital in Canada, serving over 7,000 children each year.

It was a whirl-wind morning lasting more than 3.5 hours and visiting 6+ doctors/nurses/therapists in the Neuromuscular Clinic. The idea of the centre is to provide a holistic and family centered approach to care. It was certainly an efficient experience!

We started off by seeing some intake nurses who took Stellas history. They also gave us some updates on appointments we were waiting for – her Sleep Clinic Study and Echocardiogram (Sick Kids), as well as our appointment to see the Paediatric Neurologist Specialist (Sick Kids).

Then we met an Occupational Therapist who helped us out with the paperwork for a wheelchair parking permit. What a relief that will be! We are finding with at least 2 doctors/specialist/hospital appointments each week – finding parking downtown and paying for parking downtown has become a real burden. She also found us some vendors for some curved cutlery so Stella will better able to feed herself. Currently she’s obsessed with doing things herself – just wish it didn’t make such a mess! 🙂

Next up was a Physical Therapist. She is going to help us get Stella some AFO (Ankle Foot Orthotics) and is also interested in getting Stella a Stander to help her with posture, bone density, and a number of other heath factors. We tried a power stander out while we were at the SMA conference in Florida and they seem amazing! It really helps with their psychological well-being as well!

We were really excited to see our first Respiratory Therapist. She was able to let us try out a Cough Assist Machine. We have been hearing wonderful things about this piece of equipment at the SMA conference, other parents, and even other SMA kids. After getting Stella measured for a face mask, and doing an examination we were off and running. Stella wasn’t a huge fan at first but i’m sure with practice it will get easier! Bloorview has loaned us a unit for two weeks to try out at home and is also going to start the process of helping us get one permanently. We are so blown away by this – we keep hearing that this machine is what will keep Stella healthy, and when she does get sick, it will be what gets her better quickly.

We finished up with Neuromuscular Paediatrician. He was lovely and thought that Stella was doing very well. We will have a follow up appointment in 6 months – but will continue to see our in-home OT and PT through CCAC till Stella is two years old in which case our care will permanently switch to Bloorview.

All in all a very productive day. Stella was a champ despite missing her morning nap and seeing a myriad of people.

xo mom

 

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