Well I have finally got round to posting on a proper 'Blog' for Seraphina.I have transferred all her old diary posts her and hope to keep up a regular record,both for darling Seri to look back on and also for all those people who have followed her story from the begining,supported us along the way eg Claires and her friends on Eurobabes (no I havent forgotten your kindness),march club girls,sweet Hazel (love ya!),Vickie,all on LWR,my lifeline!,Penny and Nicci and my friends at MCBC and more recently Ailbhe and Rob.
We have finally come home again after another lengthier than expected stay...Seri had 3 of her salivery glands clipped off and her Jejunostomy tube replaced for a jej button.She is still 100% pump fed as she cannot swallow properly and unfortunately despite 2 fundoplications is STILL sick and aspirates.
After a lengthy chat with her surgeon it has been decided not to go for the Oesogastric separation op yet but instead do the fundoplication again for a 3rd time.we know that this is not without its risks but we feel we owe it to little Seri to give her another chance...it might work this time,who knows.
She has been wearing splints and Gaiters on her legs to try and get her to stand properly with her heels on the floor but its not having too much success at the moment.her spasms however are pretty well controlled with Baclofen (a muscle relaxant).The next step is a stander and gait trainer to try and help her balance.