Connor and the infamous frame

Connor and the infamous frame

Graphic images below

As I mentioned in my previous blog, I ended up creating my little business when my youngest son Connor was born with Spina Bifida & severe left clubfoot. We were always told that this was the easiest thing to fix, oh how wrong they were.

Connor had over 6 surgeries to correct this foot from birth and whilst it slightly improved each time, his heel never touched the floor. Eventually we were blessed with an orthopaedic consultant (Mr Connor Green) who listened and knew what the problem was. I could ramble on about waiting lists etc but its exhausting & if you are reading this you are most likely aware of the horrific waiting lists in Ireland. 

(I know you are wondering what all this has to do with my business but they do overlap. Sewing is my therapy, it takes me away from the million questions that swim around in my head, questions that I don't have the answers to. It also came in very handy when I needed to make drawstring bags to cover the frame) 

Fast forward to December 2021 and a trip to Temple Street for surgery to take place. I'll be completely honest as much as I knew this was going to be a game changer I wasn't relishing the thoughts of changing dressings and practically becoming a public health nurse overnight. 

We spent x1 night in Temple Street & headed home the next day. I had bought a few things to try and make life easier.

First up was the bed guard to stop Connor falling out of bed, he is a fidget at the best of times and I had the fear that he would fall out of bed with the weight of the frame. 

I then bought a seat that slots over the bath. We don't have a wide enough Shower to be able to get Connor in and out of easily. I was able to sit him on this seat and wash him and the frame down easily with the old fashioned shower connection that suctioned onto the taps. I bought the bath seat on Amazon. This was by far the best thing I bought.

If lifting your child/patient isn’t an option then sit them on a chair and put their legs into a big plastic tub and wash the frame down that way & do a bed bath (cloth wash) for hygiene purposes. 

I also invested in a lap tray which has a beanbag on the underside. This came in very useful at meal times or for the odd game of Boggle. Amazon have them but I’ve also seen them in Home Bargains.

Once the big bandages and dressings were removed at our first out patient clinic, around a week after surgery, it was time to start following the frame program & to change the pin sites and wire site dressings.

I wasn't comfortable with Connor looking at this for the first few weeks so he was distracted with his ipad or switch just until they got better to look at. However by the time the frame was coming off, it was a regular occurence for Connor to count up how many scars he thinks he will have & how much the larger wound entry sites had improved. 

I also invested in a desk lamp that I could move around when I was changing the dressings so I could see clearly whether or not it was infected. I used this alongside a tray with all the medical supplies I needed to change the dressings. It was much calmer & easier if you had everything set out on a tray (much like they would in the hospital) 

We were given a tube of honey to use on any sites that were “raw” or inflamed. Just a tiny dab on the gauze dressings which I use for the first while. After Connor’s previous surgery on his spine and dealing with healing that, I’m a huge fan of silver dressings, I just cut small pieces as & when I needed them. I found they worked great but always check with your medical team first. Again I got these on Amazon and they are pricey but I swear by them. 

Clothing was an issue but nothing a pair of scissors didn't solve. I cut off the leg of his jogging bottoms & added buttons or snap fastenings. The button ones definitely worked best. I attached some elastic loops and velcro at the waistband. I also made him some drawstring bags to keep the frame covered & protected. I realise not everyone will have a sewing machine and a pillowcase does the job with a strong ribbon or elastic tied around it. 

In all honesty, I was dreading this whole process, the first few weeks were tough but once I found my rhythm and routine I managed much better.

It did cause disruption to our family life and I'm grateful it was winter as Connor loves to be outdoors.The fact that we could see it working was a huge boost on the tough days. It was incredible to actually see Connors heel looking as it should.

The weeks seemed to fly by and before we knew it surgery was scheduled for the frame to be removed. 

If you are facing this type of surgery I'm only too happy to answer any questions or try to ease any fears you might have. Simply send me an email at or message me on 0873985387. Take each day at a time & If I can get through this anyone can. 

Some of the links in this post are affiliate links. This means if you click on the link and purchase the items, I will receive an affiliate commission at no extra cost to you. All opinions remain my own. 

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