Monthly Magical Moments
February 2025
Hello Lovely People!
Welcome to February’s Magical Moments – the place where I reflect on those moments in the month that were special for a variety of different reasons. Our life (and everyone else’s) is always a mix of challenge and joy, and I want to remind myself that no matter the challenges, and sometimes because of them, there are always moments of joy, moments of magic…
1. Modern Medicine – February saw both Nathan and Cerys undergo small procedures that make a huge difference to their lives. Nathan had his Botox injections – he has these around every five months in his legs, and they help him with his standing, transferring and generally feeling more comfortable. These injections are definitely not for cosmetic purposes, but are designed to help him to cope with the stiffness in his muscles and allow him to maintain a range of movement that just wouldn’t be possible without them.
Cerys had her Intrathecal Baclofen Pump refilled – this pump is located underneath her skin in her tummy, and has a catheter line that runs into her spinal cord and slowly drips Baclofen into her system, this is then dispersed around her body and helps to reduce the stiffness in her muscles. Just like Nathan, this then helps Cerys to maintain her range of movement and helps with her comfort levels too.
One thing both these procedures share is the use of very large needles!
Cerys has tried Botox, but didn’t tolerate it as well as Nathan does. Nathan takes oral Baclofen but isn’t keen on having a pump inserted (he already has spinal rods and a pacemaker so he feels adding another device would definitely make him the bionic man!)
The fact is Nathan and Cerys might both have the same condition – spastic quadriplegia cerebral palsy – but their bodies are still unique to them and we are grateful for the amazing work of all those who have developed this modern medicine and the medical teams who work with us to ensure that Nathan and Cerys have every opportunity they can to be the best they can be.
2. Liver Scan – Another wonder of modern medicine is my Fontan circulation. Because I only have one ventricle in my heart I have had a couple of open heart surgeries, the last one being my Fontan nearly 35 years ago. This is an incredible procedure that has enhanced my life considerably, however the unique circulation it creates does put pressure on other organs. Part of my routine check-up includes a liver scan and blood tests to ascertain if my liver is coping or whether I am starting to develop FALD (Fontan Associated Liver Disease.) Last week I had my abdominal scan, and, apparently, there is little change from my last scan. At my age, and with the age of my Fontan I will take that and be incredibly grateful to be this well.
3. Out, Out with my husband! – Yes! Andre and I managed to arrange care so that we could have an evening out, just the two of us. We went to nearby Stratford upon Avon where we had a meal in one of the pubs and then went to The Bear Pit Theatre where they were showing a screening of The Critic starring Ian McKellen – quite a dark film highlighting the consequences of the choices we make. The Bear Pit Theatre is a small community theatre, run by volunteers, that puts on it’s own plays, as well as hosting theatre companies and film nights. Now we have discovered it we will definitely be returning!
4. Equipment – This month we also purchased some new equipment for Nathan. The Track wheel is an extra wheel that attaches to the front of his manual chair. This lifts the front castors off the ground, making it easier to go across uneven, outside surfaces. Nathan’s manual chair also has a ‘power add-on’ (the E-Fix) that turns it into a power chair. It is going to take some practice for him to feel completely comfortable, but this equipment will definitely aid his independence. I am well aware that this extra equipment does not come cheaply, and we are lucky that we are in a position of being able to save up for it and purchase it ourselves.
(now there is a look of intense concentration!)
5. Substack Connections – Finally, this month, after commenting on one of her posts, the author
kindly shared one of my posts. This was a big thrill for me (obviously!) and so, thank you to her – it really gave me a boost and encouraged me to continue. But also thank you to anyone who has read, commented, restacked anything I’ve ever written. It means so much to me…Extra info…
If you would like to find out more about Botox and ITB pumps as treatments for spasticity one of the best places to go is the Scope website. Links below
To find out more about single ventricle conditions – I have tricuspid atresia, pulmonary atresia, TGA, ASD – the Fontan and FALD, a good place to go is the website for Little Hearts Matter.
Now it’s over to you – what were your Magical Moments?
Oooo so many lovely moments, Donna! Awww Date night! Warm hugs to you all.