After my New Year post and letting you all know about what was going to be happening with our little angel, I have had many people ask when the operation will be taking place.
I wish I knew.
The problem is Terri is so high risk that they are having problems getting all the members of the team together that they need. For Terri, she needs a special anaesthetist and equipment in the theatre. She is officially classed as an adult being 16 years old, but she is the size of a toddler, so when it comes to knocking her out the dosage is different - I'm not 100% sure how different, but I know that she is a bit more tricky than your usual. Along with this, is the need for smaller tubes and equipment - with her being so tiny, it has been found in previous operations that she required the same apparatus as a baby. Essentially, for being such a little person she causes a lot of problems and comes with a lot of unknown.
It is getting to the point now when I just want it done. I don't know what is worse, waiting for a date or knowing what is to come. Even though I have told everyone what is coming, I am happy to admit I am completely in denial. It is like I am imagining it and it is all just one big crap dream. Maybe I will wake up tomorrow, look at her gorgeous face and her little eye will be perfect again.
It has been a week of reflection after the amazing Amy Hughes passed away, winning her final fight and being free of Cockayne Syndrome. She was the first child, other than Terri, that our family met with Cockayne Syndrome. I have watched her grow, as she has with our family and all I can say to her is thank you. If it wasn't for Amy, there would be no Amy and Friends and I wouldn't have met my second family. As a person she is known and loved by so many and I know that Terri is the same, in a way seeing the support, thanks and love Amy has received brings me peace within all the sadness.
So, the first week of the new year and new decade, hasn't been a great one. I have spent more time battling in my own head than doing anything else. But having a weekend with my little best friend has helped a lot, even if she did coat my floor in prawn cracker crumbs just after I had hoovered.
xxx
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