Catch a glimpse of B on video

She is part of a video made my her hospice. We have the full version here which she appears in twice but can't upload that. The short one on the site, its on the bottom right at http://www.chasecare.org.uk and B's smiley face appears quickly near the end.Tissue alert!

Maybe a miracle? a chance at least!

all my love and thoughts with H tomorrow as she goes into hospital for possible treatment. We love you baby!
R, M and B xxx

thankful for small things

after 10 weeks, a period of mandatory hoisting, dressings, new boots, extra padding on the w/chair, pain etc etc we finally have a result...I am pleased to say that B's pressure sore on the underside of her heel is FINALLY getting better. It sounds like a tiny victory but believe me when I say that one small thing was life changing for her for too long.

Everything crossed it stays that way and no other of the little bu&&ers show up!

Walking in that room

Sometimes I wake and I do not hear the sound of B. She should be awake. These times I am struck with fear. I do not want to walk in that room, to find something I cannot face. I share this feeling with others I know who have poorly or children with complex medical needs. When one of our friend's child is taken this way as what has happened this week, it makes our fear seem much more real and our fear goes up a notch.

I do not know what I beleive in but I hope that someone will keep my girl and my friends children safe in their sleep. However if or when their time comes, I know that they will have many little friends who will welcome them and keep them safe wherever they are.

Rest in peace dear L

Today we found out that one of our longterm SK Members children, L, had passed away, very suddenly. To say we are devastated is an understatement. L had Retts Syndrome, but as far as we are aware was well at the time. It has shocked and upset all that knew her. I remember her as a child that loved to make noise, to be around her sisters and to hear her voice heard. She had her good times and her bad times.

My thoughts are with her parents and sisters today and always and for all of us who fear.

This candle is for her.

xxx

Brief update on B

She now has her Balder wheelchair back with extra padding on the foot plates and realigned to support her legs more in order to avoid future pressure sores. Her right knee is causing her severe intermittant pain so hopefully physio will sort that out. Her skin infection on her back has spread to her chest but the doctor wants to continue with treating with special body wash. Says it will take a long time to get better. The good news is that it isn't really irritating her. Her pressure sore on her right heel is still there but not got any worse. She now has bigger boots and she wears gel lined socks all the time. Hopefully in time it will go. She had pain in both her feet this weekend but it seems to have gone now and thankfully she is able to stand transfer again.

Our main concern is the seizures - she is now on 200mg a day Topiramate for them. We will wait to see if that makes a difference.

She loves her new hair style and is still smiling
x

Monty loves high school musical 2 (too!)