Hello, and ‘Happy New Year’! (I’m aware that I’m about 37 days late with that one, but the sentiment is there)
Since our last update, a fair bit has happened. Mainly, to our house… and to the retinas of our neighbours as they have had 3 months worth of pyjama clad cooking in the garage burned onto them…
It has to be said that cooking ‘alfresco’ sounds incredibly glamorous. However, both J and I can concur that the simple act of making a brew in minus 2 degrees has been enough to confirm that we are not the outdoors type. At all.
Due to the renovations on the back of the house, our kitchen since October has been a 2 hob camping stove and some worktops in the garage. Initially, the novelty of this saw us whipping up delights in the slow cooker and painstakingly chopping vegetables in sub-zero temperatures. However, that soon wore off and, after making sure the kids were eating ‘proper’ well-balanced meals, J and I resorted to anything which could be ‘pinged’ or made in a pot for us. As a result, J is now approximately 87% Pot Noodle (Bombay Bad Boy, for anyone interested).
In addition to this, my attire started respectably, in light of the entire street being able to see into said Garage, and then transcended to PJ’s and J’s work boots … or, for those special early morning sights, my lush pink dressing gown. To add some glamour to the street. Obvs.
What’s more attractive than a hypothermic woman, in 20 year old PJ bottoms (I call them my ‘Sexy Pants’… J calls them ‘Grounds for Divorce’) parading around the garage and microwaving a gourmet meal? Nothing. J is a lucky lucky man. J-Lo can keep her abs of steel, I have my ‘corned beef’ legs. (If you know, you know)
In early December, T contracted Covid. This is something we have been dreading. If you have been following our blog for a while, you will know that we spent a long time fully shielding to try to protect T. During lockdown 1, we didn’t dare to even go for a walk in case he became ill (clearly though, an ‘outdoor business meeting’ would have been the safest option… ahem). So when he came down with old ‘Rona, we were more than a bit worried. And we absolutely should not have been. Barring one night with a headache, he had ZERO symptoms. Nada. Not one. It was a miracle to behold! Following his isolation period though, his energy levels dipped quite considerably. We are not sure if this is a side effect from C-19, or just a bit of winter lethargy, but it’s taken it’s toll on him and his mobility. He’s had a couple of nasty falls and his legs have been giving way periodically. This has really knocked his confidence.
Christmas was a jolly, although somewhat different affair this year due to the large amount of upheaval around us. However, we still had a lovely time and my wonderful In-Laws kindly saved us from a Christmas dinner of toast. We also went on the ‘Polar Express’ (Squidge spent the majority of the journey cleaning the train windows), and on some kind of ‘Winter Wonderland’ trail (Squidge spent the majority of this one eating sandwiches and waving a stick) – but it was great to find some accessible things to do as a family. It can be hard to locate things which both boys are able to access, but happily these were incredibly wheelchair AND toddler friendly for the most part.
Also, Squidge has decided that he is too important to walk now and so must ride atop T’s lap, like a throne, whenever we are out and about. Poor T. He’s a good sport though and accommodates his small passenger (tiny Dictator) happily.
After Christmas the building work recommenced and finally, FINALLY, we have a kitchen!! What’s more, we have a kitchen which T can happily wheel around; and once his bedroom conversion has been done, hopefully we can get a walker for the house to keep him mobile. We all absolutely love it, and it is going to be transformational for T. We have been incredibly lucky to have a local building team working on this project. They have handled the whole process with sensitivity, and have given real thought to what we need the space to be. Nothing has been too much trouble, and in all honesty, we can’t speak highly enough of them. We are over the moon that they are (hopefully!) going to be taking care of T’s bedroom conversion too. A truly wonderful set of people. Thank you Coburn Construction, for making our home exactly what we need it to be.
Bring on Phase 2!
In other, more medically related news, T has had a number of face to face appointments since 2022 arrived. He had a cardiology check in Leeds, with his first Echocardiogram since 2020. Thankfully, all is well with his heart. We were concerned that the dip in his energy may be down to his Hypertrophic Cardiomyopathy, but that is not the case. Hurrah!
We finally have an appointment to visit the Childrens Ataxia clinic in Sheffied too. We have been waiting for this referral since his diagnosis in 2017. Although we know there is no cure for FA, we are looking forward to speaking with an FA specialist.
This weekend we have also been back to see the Orthopedic specialist. This appointment, sadly, did not go so well. We’ve known ourselves over recent months that the curvature of T’s spine has deteriorated. At his last Ortho visit in December 2020, the curve was measuring 28 degrees. It is now measuring 60. At a previous visit, we were told that anything over 45 degrees triggers a serious conversation about spinal surgery. It would appear that, as we are way over that marker, this is now very much on the table. A referral will be made for T to have an MRI scan, to ensure there are no cists on his spine causing his legs to give out and then following this, he will be sent to see a spinal surgeon at either Leeds or Sheffield. This is not the outcome we hoped for. T became very upset at the appointment. It was hard to find the words to comfort him. It still is. We sat in the waiting room following the appointment for a long time. He cried, I cuddled him (and cried in secret).
Then, we got stuck in the frigging lift.
Yep. We got stuck in the bloody lift. On the ground floor. So close to freedom, and yet so far. 5 minutes, one alarm call and a weird conversation with a lift lady…
Me: We are stuck! Please can someone help us?
Lift Lady Loretta (not sure that was her actual name, but we’ll go with it): What floor are you on?
LLL: Well you can just go then.
Me: No we can’t, the doors won’t open.
LLL: But you are on ground.
Me: BUT THE DOORS WON’T OPEN.
LLL: I don’t understand. You are on ground, you can go.
Me: LORETTA PET, THE DOORS WON’T OPEN!!!
Randomly, the lift then shot back up to floor 1, despite previously refusing to move anywhere, and so we got out and a kind Porter rescued us in the VIP lift. Phew.
We then finally managed to get home, where T, J and I (Squidge was completely oblivious) spent the day trying to process things in our own way.
Saturday, all in all, was a sad day. Sad Saturday. But today is a little brighter. T has had a friend over, Squidge has been on hilarious form, and J made a rather epic Shepherds Pie.
I fear that the next few weeks will not be easy ones, but we will get through them the way that we always do. Together.
I shall leave you with some pictures of T with a stack of pancakes as big as his head… and Squidge stood on his potty (potty training is not going well…)
Lucy and The Rileys
One thought on “60 degrees too far.”
My sister has FA and I have SCA3, type 3. My sister was diagnosed at 18, but started having symptoms at around 10. Your blog is really great! My sister was supposed to wear a back brace for most of her middle school. But is now dealing with issues of her back as well. Sending solidarity and good thoughts for your kiddo and you all!
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