2019, Fundraising and Marvin the Monitor

Happy New Year! Apologies for the lack of updates, we spent the Christmas period cocooned in our little family unit and then have since been trying to get back into the swing of things… and trying to fit into our clothes following a few too many Christmas carbs…

Mr T is doing well. He was definitely in need of the Christmas break, and following his arrhythmia scare, we have been happy to let him have all the rest he needs. Consequently, his movement has become a little more unsteady and he seems to have developed a bit of a troublesome knee. Luckily, J has administered ‘The Magic Bandage’, so we are hoping for a speedy recovery! Energy levels continue to rise and fall, this was evident over the festive period as Santa delivered a new basketball hoop for the garden – which Mr T was most excited about! After 5 minutes of playing in the garden, we turned to find him lying on the grass totally wiped out. This is unfortunately just the way things are some days. Some days – but not all! Since going back to school, and playing with his friends, he’s definitely perked up a bit. He’s also PUT SOME WEIGHT ON! HALLELUJAH! He’s still more ‘String Bean’ than ‘Chunky Monkey’, however its definitely helping to stabilise him a little more.

The walker (a.k.a. the Zimmer) is not going down well at school. At all. He just doesn’t want to use it. We totally understand why (would you want to use a zimmer frame age 9?) but we are trying to gently ‘coax’ him into it. I may resort to bribery. Don’t judge.

We are also still in limbo in terms of appointments and consultants too. We are still waiting for an appointment to come through for the Ataxia clinic at Great Ormond Street, and we are also still waiting to find out who will be T’s main consultant for his cardiomyopathy. This could be someone in Leeds, or a separate trip to Great Ormond Street. After T’s heart arrhythmia scare before Christmas, this is the area currently causing us the most concern. Things seem to be moving forward a bit though, as T is currently sporting ‘Marvin The Monitor’. A mobile ECG machine that records his heart rhythms for 72 hours.

Now Marvin has to be worn 24 hours a day, and he’s a problematic little critter! A wire was lost in PE on Friday and T was a walking beep machine for the afternoon until his Granddad could fix it. As usual though, T has been awesome, despite the fact that Marvin makes random noises and is somewhat uncomfortable to sleep in. We have to record the exact times T eats, goes to bed, gets up and any activities in between so the Drs completing the analysis have the best understanding possible of any changes. Hopefully once these have been analysed, we should receive a few more answers. The 72 hours are nearly up now, and Marvin will return home in the morning, back to Castle Hill Hospital. Farewell Marvin, we shall miss your beeps.

In other news, our wonderful family have decided to take on a number of challenges to raise money for Ataxia UK in T’s name. Ian, Dr Ems hubby, is running/swimming a different event every month and my lovely Father-In-Law – J Senior, is going to run the Hull 10K in June. J himself has decided to take on a number of running challenges throughout 2019 too. So far he has 5 runs booked in, with a further 2 to be confirmed. All are a mixture of 10k’s and half marathons. If anyone would like to sponsor J, his JustGiving link is below:

J’s JustGiving page for Ataxia UK

So that’s us up to date on news for the moment! To finish, I’ll leave you with a picture of Baxter the Mexican Pug tucked in at bedtime… for no other reason than its a really cute picture. Enjoy x



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