Henry’s story part four – Home
I had to do some major moving around of things in the house to make room for his walking frame – now got a clear route through the living room, dining room and to the stairs. Getting up and down the stairs Henry is going on his bum lifting his foot up with me supporting him until he gets used to the weight of the frame. I’m also helping him out with his transfers e.g. walking frame to sofa, top of the stairs to the bathroom, etc. I’m hoping he’ll get better at doing these transfers himself soon – I can already feel twinges in my back from leaning over.
I’m glad I was semi-organised and got some bits sorted before Henry had his operation – I bought a frame to go in his bed to keep the bed covers off his leg / frame which has been good, and I also stocked up on bed sheets as we were warned he would go through them – and he ripped the first sheet on his second night at home! We also ordered a wee bottle for him to use at night – me and Henry stumbling around at night taking him to the toilet would just be too risky I think – and he’s got used to using the bottle from his time in hospital.
A fellow parent (whose daughter had an ilizarov frame) that we met in the physio department when we were doing some pre-op preparation had recommended getting a soap dish holder thing that goes across the bath that Henry could then rest his leg on to get a shallow bath. I bought a non-slip bath mat for Henry to sit on in the bath and with a towel or blanket on the soap dish holder we have managed to give him a little bath which is good! Another thing that has been good is we’ve been using a baby monitor at night so that when he’s in bed and I’m downstairs that he can let me know if he’s in pain or if he needs a wee.
My auntie has been a superstar and has been altering some clothes for Henry – pyjama bottoms and underpants. She’s put velcro on the right side which makes them easy to get on and off without having to stretch anything over the frame. I’ve been and bought a few tracksuit bottoms that my auntie is also going to adjust for me. I had hoped to sort that out before his surgery but as with all great plans that never happened – but he’s not venturing outside at the moment so is quite happy wearing pyjama bottoms at the moment.
Doing the turns on his frame with the spanner has been ok, and I have alarms set on my mobile to remind me when to do them – 8am, 12pm, 4pm and 8pm. It’s surprising how quickly time goes now we’re home and there’s been a couple of times that I’d have missed the turns if I hadn’t set an alarm – partly from being busy and partly sleep deprivation!
We’re expecting a tutor to come from the Alder Hey School to do some work with Henry which he is really looking forward to – NOT! I do think it will be good for him to start using his brain again though – makes a change from watching tv and playing computer games!
What I liked best about hospital was playing with my friend in the bed next to me, going down in the lift in the hospital to get a hot chocolate with my daddy, my nurse Hayley and watching Avengers a lot of times on the TV and Iron Man 3. I didn’t like when it was night time because of a girl screaming a lot, I didn’t like staying in bed all day or the yucky medicine. I liked coming home because I can get around more and don’t have to stay in bed all day. I liked coming home for my birthday.
Sarah is telling hers and Henry’s story to help raise awareness of Bilateral Talipes. If you enjoyed reading this, or if you are a parent in a similar situation, we’d love to hear from you in the comments section below.