Thursday, 17 November 2011

Let me tell you about...POST PALS

Ive been wanting to write this post for a while as this charity has become very close to my heart.

Most people know how much Seraphina has to go through on a daily basis, what I dont often talk about is how much the other members of my family go through too.
My other children..Joseph Thomas patrick,
                               Aimee Hannah Joy
                               Lydia Catherine Grace
                               Eve Angel Hope
and not forgetting  Samuel Peter Jacob

These sweethearts go through SO much too, they are my heroes.They cope with the heartache that an absent parent brings when they are once again unavoidably detained at hospital to care after their sick sibling. They cope with the crushing disappointment when a parent cant come to their class assembly,parents evening or school fair because they are away or their sibling is too unwell to be left.

 There are lots of charities out there which cater for grants for special needs children..all geared towards the needs of the special needs child but POSTPALS is different....wonderfully so.

Post pals was set up by a lovely girl called Vikki who herself is very ill with M.E and at the time Post pals was set up was totally bedridden, the gorgeous Vix is also poorly with M.E as is wonderful that these people, all with their own illness to contend with, should stretch out a hand of friendship to extremely sick and life-limited children AND their families all over the U.K.

The concept is simple, the results are life changing.
My little girl has had postcards from all over the world with her favourite things on them...shes had lots and lots of her beloved bath ducks sent to her (we may even have to build  a second extension to house them all :-p) shes had thoughtful presents like a pair of long fluffy socks sent to her from Finland. Even lots of cut out yellow chickens sent to her at easter....painstakingly cut out by a primary school class each with the childs name on.
and her siblings....they are also included too. Ria ( a postpals volunteer) made them all pillowcases with their names on and their favourite TV should have seen thier faces when they got those! they have had cards, letters and small gifts, each one which bought a smile to their faces and a realisation that people cared about them too and how they were feeling. This has been such a blessing when I have been away from home.
Of course I must not forget the Dotty project. a lovely spotty dalmatin puppy who had siblings sent out to every sick child and their family..we named ours Bottomly Potts. Dotty has amazing adventures and always keeps us ''posted'' (sorry couldnt resist) on what shes getting up to.

Post pals are wonderful...
Its amazing how a simple postcard with a ''Hello, just sending you a smile'' can have such an impact on a tough day.
From the Christian members of Postpals we have recieved prayer support which is just as important...prayer is powerful and changes things.
Even Mums arent forgotten as I found out recently on a long hospital stay. I got sent a ''Hospital survival kit'' Its hard being in a hospital over 100 miles away from home.Visiting is limited because of distance  and often (as in this recent admission) unplanned so you end up having nothing you need with you.
This arrived and ...Ill be honest, I cried. it was totally inspired...whoever thought of these boxes deserves a medal. Inside there was everything you needed to literally 'survive' a hospital stay.From sachets of hot chocolate and cofffee (!) to a  travel toothbrush and toothpaste, showergel and deodorant (which as every mum knows who has slept in her clothes wiothout hope of a change of clothes for another 24 hours YOU NEED!)

I even got sent by a wonderful person...a book by Jane Austen (My favourite author) How spoilt did I feel!!!
As wonderful as all these things are....its the meaning behind them thats the most important arent forgotten. There are people out there who read updates on what is going on, who CARE whats happening to you and your family.
Most recently Seraphina has been suffering with sore painful ulceration and weeping at her jejunostomy site...Postpals came to the rescue again.They made and sent something called ''button buddies'' which are a simple design of circular cotton with absorbant backing which just fasten round the base of her jej button and protect the site from moisture whilst allowing cream to be kept on and soak in. They hae been FANTASTIC...her site is so much improved since wearing them....Seraph has even got into chosing her own button buddy for each day which has also helped with the psychological issues she was developing around having her button cleaned.

What I want to say is a HUGE  'THANK YOU!!!!' to Postpals for making my children (and me)smile.
and to anyone who is thinking of supporting postpals either by writing a letter to a sick child or giving a donation finantially.....DO IT!!! :)
Thanks for reading  ...go on..make a sick child smile!

Seraphina with a card sent to her by St Patricks R.C Primary school, Cardiff. thanks guys x

Tuesday, 15 November 2011

The GP, a Nee nah and a Sheffield trip

We've just walked in after a trip to Sheffield Childrens again.Its been a bust week or so and so I thought I would blog to bring you all up to date with where we are at.

We have been struggling to try and get Seraphinas feed up, so far we havent managed it although when her steriods were increased back up to the max after trying and failing to wean them down we noticed an improvement in her straight away. we are now on just over half strength feed but have not managed to get any further.we have still had bleeding on and off but not as much as before.
On friday I decided to take her to the GP as she had what startwed out as a very small yellow hear kind of thing on her chin...but then it kept coming up to a head, bursting and then getting bigger,coming up to another head bursting repeat repeat, till it was almost the size of a 10 pence piece and very painful for her. As  I didnt want it getting worse over the weekend and she had had a litle bleeding I decided to see the GP for er opinion and ask them to check her HB.

Well to cut a long story short the GP took one look at her and called an ambulance...she didnt help herself mind you by having a seizure at the surgery! The GP felt she looked pale enough to need a transfusion and the spot/boil on her face was definitely infected.
They sent an ambulance....but the men apparently couldnt take her (wrong ambulance apparently?!?)
As she had a seizure and was out cold the ambulance men put her on thier SATS monitor (much to the great interest of everyone else in the waiting room who began to stare at her like she had three heads or something) and ordered another ambulance the HDURV they very importantly told me. ''rrrright I said....which means??''  '' Oh its the High dependancy retrieval vehicle''...I enquired whether she needed that level of care and was assured she did...the only hitch being that it was coming from the rush hour....45 mins away *sigh*

Im not sure what happened next but they changed it to another vehicle which was closer and another 45 mins later (yes this is 2 hours later for a 999 ambulance!!) when the surgery staff/GP and practice manager were all ready to rip the ambulance mans head off, the ambulance arrived....
............only for him to say ''sorry I cant take her'' *cue me mentally slamming my head up against the surgery wall * but in reality saying rather curtly'' WHY NOT?!?'' apparently they couldnt take her as they hadnt got a sats monitor on board. I suggested that they borrow the sats monitor from the other ambulance to go over with but they said horrified ''oh no! we cant do that!!'' as if I had suggested the Queen herself run naked through the street

At this point I got a little bit annoyed (just a little !) and told the receptionists what they said..they assured me very loudly that they were logging all this down as a complaint and suddenly they could travel. The man from ambulance 1 accompanying the SATS monitor on ambulance 2 ( in case it got lost obviously) still attached to Seraphina...along with Ambulance 2's two crew,whilst the other crew member from ambulance 1 drove on ahead. SO one simple trip to escort my daughter to hospital required 4 ambulance men and two ambulances (work out what a cost effective way of using taxpayers money that is!!)

At hospital they took numerous bloods and found her iron level had dropped but not, thankfully,low enough for a transfusion. Her infection markers were up and so antibiotics were prescribed for that otherwise we were allowed to go home as we were in Sheffield on Tuesday anyway....what a day!

Today has been the Sheffield trip. The decision was made to start the Azathioprine now as she was suffering quite badly from nasty side effects from the steriods (increased anxiety, agitation, more seizures, self harming and increased ''Rettness''where our little girl is incredibly hard to reach) at such high does and when we were reducing them slightly her gut wasnt liking it.
he had the results from her biopsies which showed lots of eosinophil infiltration (for my 'gastro friends') and abscesses throughout her colon. I can understand why she has been in so much pain.

The consultant was concerned that her iron level had dropped so quickly and explained that in the cases where an inflammatory bowel diseasecalms but she keepas bleeding then a colectomy may turn  out to be the best option for her along with TPN but we are trying the azathioprine first which is another immunosuppressant to use along side the steroids. other medicines have also been raised as it was agreed her bowel is doing absolutely nothing at all on its own now and 48 hourly suppositories arent very nice for her at all...though may be neccessary if these meds dont work and her bowel has completely shut down.

She will also be having weekly bloods from now on to monitor her..
She is about the same weight-wise at just over 17 kilos which is pretty skinny for a child of 3'10'' but at least she hasnt really lost any more.

Your prayers as always are very much appreciated both for Seraphina and that breakthrough which will enable a cure for Rett day.