There's been rising concern again over Hope's tendons in her feet and ankles. Despite wearing splints (which are an ongoing nightmare in themselves) as soon as she's out of them (which she often manages to escape from them herself) her feet point outwards again. This makes standing (supported obviously) uncomfortable and well... They just aren't how feet should be. The more she does it, the less the range of movement becomes.
We are just going through the process of having new splints made. It was at our last appointment that the dreaded casting was mentioned again. Last year she spent 5 weeks in plaster casts from her toes to the tops of her thighs. This process stretches her tendons. But it's a nightmare. She cant do her favourite actives of rolling, swimming and soaking in the bath. Clothing is limited. But mainly, She's so awkward and heavy with them on. She was last year, and she's almost doubled in size since then.
It was left that we'll see how she goes in a few weeks, and see how she gets on with her new splints when they arrive next week.
On Tuesday we had our regular 3 month appointment with Hope's main consultant (and wonderful man) R. He gave her a thorough check up, and was generally satisfied with her epilepsy, her spine and overall health. Though he remarked that the bout of coughs/colds/ infections she's had recently may be linked to me stopping breastfeeding, in November of all months!
He's never really shown much interest or concern over Hope's feet and ankles. Leaving that to be dealt with by the physios and appropriate doctors. However on this day, he was very concerned over the tightness of her tendons and the inflexibility of her feet and ankles. He pushed twisted and pulled my poor baba around till she screamed and tears ran down her face :"(
But, for the first time ever, Botox was suggested. I've heard of it being used for children with cerebral palsy quite often, but had never considered it for Hope. But R Hope's that by injecting botox into the surrounding muscles, they might relax somewhat and relieve her of the tightness. So, she's now on the waiting list- which is 3-4 months or so. So hopefully in the mean time, we can keep the plasterers at bay!!
Events Are Hard
2 days ago