All posts for the month January, 2013

Let’s update…

Published January 7, 2013 by Caitlin Rose

Despite having her gruelling assessment brought forward to mid October 2012, we were still only hopeful of hearing the report outcome before Xmas 2012. The Frenchay Hospital SDR Suitability Assessment involved two Physios, two rooms and took two whole hours – quite an ordeal for a three year old. Despite the rolling, standing, walking, standing, running, stretching, bending and flexing, Caitlin did very well and in good spirits. She was exhausted afterwards but recovered to go into Cardiff with her family for a nice meal that evening.

Told the results were due early December, we had the agonising delay of Dr Pople being away for a further two weeks before we received them. Considering the severity of this report, the amount hanging on it, we were a bit surprised to find that it was no more than two pages long and prone to basic error…things as important as noting the wrong side of Caitlin’s body being denoted as more problematic, or her being a GMFCS 3 as opposed to the 2 we were told she was … you know, minuscule inconsequential things like that!!

Anyway, cutting away the nonsense after the scrutiny, glossing over the option of waiting another 18 months to test Botox effects, we cut to the important part which stated that CAITLIN ROSE FORD WAS ELIGIBLE FOR SDR.

After a short period of discussion, we decided to respond with a rejection to the BOTOX option (this is not recommended or licensed even under the NICE guidelines for minors) and a request to be put immediately onto the waiting list for SDR. We also requested clarification and repair to the report. Shortly after this we received confirmation of her listing but as yet no date has been proposed. 

This all happening in December meant we were able to finally get Xmas under way. And a fabulous Christmas it was too! Thank you SO much to all our friends and family, all our well wishers for your support and kind words. This year of 2013 will be an interesting one.