Demons, Delays and a very special Dolphin

It's always night time when you start worrying about things, isn't it? When the senses take a break and the absence of light and sound leave a void for you to fill with nothing but thoughts. It tends to go either way doesn't it; it's either an admin session where your To Do list becomes front and centre, or it's a time for anxieties to win their fight for your attention. 

In the past I've talked about how writing this blog is therapeutic for me. It enables me to make sense of a lot of emotions, positive and negative. Lately there's been a bit of both, so it felt appropriate to write this post.

Rory is suffering with a cold at the moment; we all are! We're Covid-negative, just bunged up and sniffly, and Rory has needed a bit of Calpol to help him sleep. Although he’s merely a little under the weather and is coming out the other side now, it's the first time he's been near what could be deemed as 'poorly' since last year. 

To coincide, this past week I've had trouble sleeping. Memories of last July come flooding back with force and really affect me. Why now? I wonder if it's because Rory isn't 100%. A flicker of illness seems to have triggered some deep set panic and pulls me right back to square one. It takes me a while to fall asleep, because it’s hard to make myself think about something else other than the rolling wave of his ventilator. Blue wave, blue wave, brown wave, blue wave.

In the morning I'm completely fine again. Logic prevails, Rory wants his breakfast and we get on with the day. But I wanted to make a note of this strange series of flashbacks, because if it happens again I need to be able to read back and remind myself that it’s ok to have these irrational worries. 

A recent family photo - haven't shared one on this blog in a while!

Surgery Update

Unfortunately the surgery that Rory was supposed to have on his ureter this week has been postponed. His consultant has had to go through his own emergency surgery! There’s a small chance we could still get in before Christmas but it’s more likely going to be early in the new year now. It doesn’t make too much difference to us; it's a shame but we wish Mr M all the best in his own recovery.

Prosthetic Update

Rory has outgrown his first prosthetic leg! Width-wise it still fits, so when we went back to Sheffield to see his prosthetist she measured him up and added some height to the leg between the base of the socket and the top of the artificial foot. It's really improved his stance and he's making great headway in learning to walk. He's literally running around with his walker now... just not letting go yet!

We've also exchanged the two velcro straps for a silicone sleeve. This will sit part over the prosthetic and part against his skin, to allow for a tight grip that will prevent the leg sliding off as well as reduce twisting that we often found with the straps; whereby the prosthetic would slide around leaving the foot pointing at strange angles. 

 

Catch Ups

Today Rory had a check up with his paediatric consultant. We meet with Dr F in Sheffield every 6 months or so as a general overview of his care, as well as to check on his development, being ever conscious of the high risk of lasting effects from the meningitis. All good! No concerns from us as parents nor from Dr F. Thank goodness all continues to be well on that front. 

We have a joint clinic with Orthopaedics and Plastics next month to discuss 2022 surgery plans for Rory’s leg . We know that there’s a good chance he might need a temporary metal plate inserting inside his leg to help realign his bones, and he will definitely need an op on his skin graft to ease some pressure and stop it pulling his bones apart at the join. The timings will be dictated by a number of factors, including his physical development; they’ll want him walking first before they drag him back in to theatre as he could be out of action for a while, so their intentions are to ensure that surgery recovery time won’t hinder any natural milestones, i.e. his first independent steps. It’s really nice to know that both Mr F and Miss T appreciate that Rory is a little boy with a life, not just a patient.

In Other News

We were all extremely saddened to hear of the passing of Winter the Dolphin last week. Some of you may know the film Dolphin Tale; the true story of a baby dolphin who was found injured on a beach at two months old. She was taken to Clearwater Marina Aquarium in Florida where her tail fin had to be amputated due to excessive damage from being entangled in crab nets. Her incredible carers had a prosthetic tail made for her to allow her to swim again, which afforded her a further 16 happy years of life. The way she adapted to her prosthetic and new way of life was an inspiration to amputees across the world, especially for children with limb differences, and we had very much hoped to take Rory to meet her one day. Here's an old photo of Rory with his beloved Winter teddy, complete with velcro tail. 

Rest in peace Winter. 

 

Photo credit: instagram/CMAquarium