Thursday, 4 February 2010

Dear Cerebral Palsy...

I am well and truly over you!!

I have had enough seeing my daughter struggle every day and with every kind of therapy and treatment!

Since Violet's 4th Botox Treatment in October 09 her leg/foot have become tight again and this only happened in December 2 months post Botox.

She is in agony with and without her AFO on. Just seems to be getting tighter and tighter and she is walking on the side of her foot so much which has had a big callous for a while now and she looks like she is going to break her ankle the way she keeps walking.

Preschool rang today to say she was screaming hysterically to have her AFO taken off as she was in so much pain, so I let them take it off, but it just can't go on like it is.

We have been told she will be having tendon lengthening surgery around 6, but we need something now. Just wish (as all parents of kids with CP do) for a quick fix long lasting solution or better yet a cure and not bandaid solutions they give our kids with botox, casting, AFO's etc.

I rang her Physio at the Hospital today and she is going to put Violet on the emergency Botox list because she is in pain. I told her I am hesitant to put her thru more Botox as she never has had great results on her leg/foot and they don't last long enough on Violet. Hardly makes it worth subjecting her to such an awful treatment, if the benefits are small and not long lasting.

As Violet also has Dystonia along with the CP, she thinks this may be also causing her more discomfort aswell, for which they are keen to try meds on her. They talked about them when she was 2 but I wasn't keen to medicate her for it then. Such a huge decision!

I am more than a little over it all at the moment! I really do hate crumbling under these circumstances but everything just heaps up on you after a while of plodding along pretending to look like you are coping.

Sorry rant over!


Alison said...

Sarah - so sorry to hear Violet is in such pain with her leg. I really hope her doctors can come up with a better solution.

I know what you mean about being over it. I am having one of those moments myself!

Josephine said...

I am so sorry. This is horrible not only for poor Violet, but also for you as her mother and the person who loves her more than anyone in the world. I pray that a better solution is found, and soon. Why do they want to wait til she is 6 before they do the surgery?

Rosalie said...

Oh Sarah that's horrible. I totally get you though. Some days it feels like you can't go on like this! I hope she feels better very soon.

Mazzmerise said...

Oh Sarah♥ I wish Violets Pain would go away, it is so hard seeing our children suffer and we all wish we could trade places yesterday to make it all better...

I to understand the over it and My Daughter does not have CP or any of the issues little miss Violet has you guys give me strength as I have only one thing with alex not a good one but still small in comparision.

{{Hugs}} to you both (All) ♥

Hope the hospital can do something to help with the pain and that oneday they can find something to help children with CP ♥

n0thingbuteverything said...

You're right. It's so not fair and there really should be more that can be done to help.

Sending big hugs to both you and Violet.


Ally said...

Oh Sarah, poor little Violet.

I truly hope they can work something out for her, it's absolutely horrible that she's in constant pain.

Are you seeing the Drs through westmead? Isla botox Dr does it differently if you want his details, maybe he can give a 2nd opinion/more options?

Big love to you both xx

April said...

I'm so sorry there are so many challenges right now... it's heartbreaking to see someone you love hurting. Hang in there!