All this week, Carys and I have been ‘coping’ with her new A.F.O’s. A.F.O’s are not to be confused with U.F.O’s, although lately, I’ve been wondering about that… Useless F…ing Objects, I think, is the more appropriate terminology.
For the uninitiated, A.F.O’s (Ankle Foot Orthoses) are little plastic leg braces which hold the wearer’s foot in a better position than they are naturally wont, providing support and good posture. They are supposed to help with walking. That’s if they fit the child’s foot. And if you can get a shoe to fit the brace. Doesn’t sound so difficult, does it?
Carys has been wearing A.F.O’s since she was three years old. Initially, I was very excited. I mistakenly believed that we had found the magic key which would get her walking. Months turned into years, and we are no nearer that goal. Carys’s ankles are stronger, but she still has pronation, low muscle tone, and zero balance.
One day last year, I noticed that she was sliding her feet back inside her old A.F.O’s and walking on her tip-toes, but unless you knew that, you couldn’t tell. I could, because although I’m not an expert in physiotherapy, I am an expert on Carys. Her teachers and PT took some persuading; she went months in a pair of walking boots while I tried to convince them.
Meanwhile, the tip-toe walking continued, in shoes and bare foot. Then I noticed that when she moved from tiles to carpet, she dropped down from her toes and walked across the rug normally. Back onto the wooden floor, and immediately she was on her toes, light as a ballerina.
Could it be a sensitivity issue, I wondered. (And then went on-line and ordered ‘The Out of Sync Child’…)
A few days later, my eyes fell upon a pair of fleecy insoles whilst out shopping. I bought them, cut them down to size, inserted them into Carys’s shoes, and took her walking. Within three steps, she was walking as normally as you or I.
Then the new A.F.O’s arrived. Simple, I thought. Just strap ’em on and away we go.
Not so. After an hour, Carys had red lines running up the inside of her legs to her knees, and big red indentations on her ankles. The marks looked like the gruesome trail of a previous , very bad surgery. I took them off her in horror and phoned to arrange a reassessment. And with the big wedge foam heel they had added to try and stop the ballerina act, it was now impossible to slide the brace into a shoe without going up four sizes.
Carys has enough difficulty trying to walk without all that added into the mix. Meanwhile, the PT phoned, insisting that Carys must ‘tolerate’ the braces for a couple of hours a day, if that’s all she can manage. Well, what’s the good in that? If she needs the support of a brace at all, she must surely need it for more than two hours a day. Besides, if she experiences any pain or discomfort whilst walking she is quite likely to refuse to walk at all, and then all our hard work will have been for nothing. Either that, or she’ll be crippled for life. I can’t allow that to happen.
Today I took Carys for her annual check up at the special needs dental clinic. I wasn’t concerned. Why should I be? She doesn’t eat any of the ‘crap’ that ‘normal’ kids eat… she can’t.
Carys opened her mouth wide… and screamed as if she was being murdered for the duration of the appointment. The dentist didn’t touch her, or insert any kind of torture device… I mean, dental instrument into her mouth, but Carys screamed anyway.
The good news is, the dentist got a really good look at her teeth. The bad news is, she has two teeny tiny cavities on her two front teeth. Her adult teeth. She needs them filled within the next six months. And the only way to do that is with a general anaesthetic. Which she can’t have on account of the gravity of her heart condition.
This type of procedure can only be done at the big children’s hospital in Crumlin, Dublin, where the dental department must now liaise with Carys’s cardiologist. And any other of Carys’s doctors who would like her to have tests/ procedures done whilst she is under anaesthetic. Because Carys’s heart is too bloated and weak to risk unless it’s absolutely necessary, and so, many procedures have been shelved awaiting just such an opportunity.
I can feel my blood pressure going up already.