Thought I would post a little update as I have been asked by a couple of people as to our current situation.
Well we have been out of hospital a WHOLE MONTH now! :-)
Cant tell you how much we appreciate this as the monthly stays were getting a bit much.
In that time yes, we have struggled. Seraphinas gut is becoming increasingly difficult to manage.Having said that the rectal tube we have has proved to be really valuable.We have had to use it twice in the last month when she 'blows up' to deflate her intestines.
Its not a nice job, its incredibly messy and I hate doing it purely because of the discomfort and fear it causes her but I have to tell myself that to leave it would mean an ambulance trip and hospital stay which would be even worse for her...so you just grit your teeth and go ahead.
As far as where we are now..well the good news is finally her gut seems to be absorbing her feed again.At times I have not known whether we were conming or going as she has been fed and Ive thought 'great, we're on the up' only for her to 'explode' everywhere and literally dump all her feed. Those who follow me on twitter will have had to put up with some 'Poo everywhere' tweets as I let off steam and so apologies for that. Some days I have had to bath and change her and wheelchair covers 3-4 times and it has from time to time got me down.
As far as her energy levels go she has good days and bad. Pacing things for her is a little tricky and sometimes I get it wrong. She recently had an absolutely fabulous time at a party at the EST Donkey sanctuary in Birmingham. We all did to be fair. It was organised by the Livvyssmile charity and we all went to spend some family time together. Seraphina had her first donkey ride...you know what I dont think I will ever forget the look of pure joy on her face or the giggles when the donkey started to trot :-).I will try and get some pictures posted of it very soon x
The instructors had asked beforehand if I thought she would cope with a trot and I said ...'go ahead and try' which they did...well my little dare devil thought it was the best bit and when the donkey slowed his pace again she was jigging up and down in her seat trying to make him 'go faster' again...very kindly the donkey obliged for another trot .
Even typing this is making me smile and chuckle...its just such a precious memory.
The day wasnt without its drama as Samuel decided to have a fight with the bouncy castle...it won and Sam lost his front teeth (they were wobbly I hasten to add) but you know how much mouths bleed. He was ver brave though and after a it of a cry and cuddle he went on to have a fabulous afternoon aided by the balloon modeller who made him and elephant! The girls had fun doing circus skills and even Joseph was joining in by the end of the afternoon. All in all it was a lovely day to remember and let our hair down after the in and out of hospital recently.
We have had to make a hard decision with Physio recently. We tried to adjust and put Seraphina in her old gait trianer...sadly it didnt work. Seraphina has no strength in her legs any more and even with support she cannot weight bear and scoot along like she used to...well not at all. Physio has decided that its just not fair on her, the gait trianer is just not suitable any more and she clearly wasnt enjoying it. This was somewhere we didnt want to go at all...but something we have to let go, hard but neccessary.
We are back in hospital on Monday, up in Sheffield. We have an orthopaedic review to look at her little legs and also monitor her scolliosis and a meeting with the surgeon to discuss her next operation. This is something I am not looking forward to but something we cant put off. We cant continue to use a rectal tube long term, it just isnt fair on her so the plan is to put a third stoma in her bowel. Sounds simple enough apart fromt he fact that Seraphina does VERY funny things like stopping altogether and going on strike if anyone so much as glances at her bowel let alone thinks of operating on it.
Im guessing the 'letting go' will be tested again, good job God is there to catch me at the same time as holding my darling Seraphina.
'' The Eternal God is your refuge and underneath are the Everlasting arms'' Deut 33:27