"A long December and there's reason to believe maybe this year will be better than the last". I sing this song every year, but this year it really has meaning.
The year began with a routine tenotomy to release the tendon in her right foot, as a part of club foot correction and ended with a bone marrow transplant. It seems like all we've done this year is spend time in hospitals. Maybe in 2012, we'll spend more time out of hospitals.
We've been home for three weeks tomorrow and it has gone by so quickly. Our days are dictated by routine and if we deviate, it can be a struggle to get back on schedule.
Miya takes several medications via her NG tube four times a day. She also requires 1100ml (1.1 litres) of fluid per day in order to flush her kidneys. If we go anywhere, we have to make sure it is just after she's had her meds and a liquid bonus (through her NG tube). She's still not eating properly so most of her nourishment is through Pediasure, given through her NG tube.
Our first clinic appointment was two Wednesdays ago, and we go back tomorrow for our second appointment. Usually, children attend clinic weekly for a while, and then move to bi-weekly, then every three weeks. Miya went straight to bi-weekly. The consultant said that in 10 years at GOSH, he has never had a better Hurler's patient. I was so pleased to hear that.
Other than the daily liquids and medications. life has been relatively uneventful (thankfully). I am soooo excited for Christmas (19 more sleeps!!) and have had fun searching for toys for Miya. (I think I may have gone a little overboard. Oops.) Miya has been so brave and so good this past year, I just want to over-compensate with...stuff. (Yes, yes, I am aware that if I continue, she will turn into a spoiled brat.)
After 10 weeks off, Chris went back to work yesterday. I must admit that when he came home, I collapsed on the sofa. Looking after Miya isn't difficult it's just tiring.
Sadly, there's not much to update you on. Miya is well and Chris and I are well. The dog is well, too. I am excited to receive my mum's yearly Christmas box. It should be here next Tuesday or Wednesday. Dad also sent a box too, with Ganong's chocolates in it!! Fabulous!!
