today was a hospital day, maybe our last regular weekly one!
it was a hard visit today
finally emily was reviewed by one of her surgeons (yes she has a large team of doctors that start with fellows, professors and end with heads of micro surgery) lots of talk about where she has come from (more of my own realisations about how lucky i am to still have her with all her limbs in tack), and lots of talk and trying to work out what she has in terms of function (basically what they thought she would have) and then finally the very long list of what she doesnt have, which i listened to while trying to stop myself from crying. they are however happy with her progress and with the work they have done so far, i guess it was just hard for me to listen to the whats missing thing. they r still hopeful of more improvement.
still thinking more surgery in jan, thumb reassignment to try and give it more use, maybe muscle then and a fat flap. i always knew we had more surgery to go...but to hear that she faces a life of surgery is pretty scary. they expect that she has several surgeries that are corrective then every few years to help with growth and assess where everything is at, probably until she is 18 years old! we were thinking that maybe by the time she was 12 or 13 we might be able to put the hospital behind us, but it appears not! Its sort of thrown me a bit.
anyway...ot and physio is being transfered to ballarat so that it can be intensive we hope for next week, but we will find out tomorrow for sure. otherwise another week of melbourne
she did get her pressure garment today but which is good, which has this gel silcone sheet that goes over the graft itself first. its funny stuff. so goodbye to crape bandages and tube grip stuff...thankgod, i was stick of seeing that stuff. she will be in the other for 23 hours of everyday! wont that be nice during summer! She gets an hour break after her bath every night from it all.
anyway, i dont really know how to record how i feel about it all, just that today was a little to much for me, but everything is as ok as its going to be for a while
another review in 2 to 3 months..ya!