so many mixed feelings

Its been a tough day today,didnt start out well I suppose because I was up from 1am...for a change it wasnt with Seraphina.On the contrary it was me...horrible vivid flashbacks of her traumatic birth,then the ventilation at 4 months,seeing her turn deep blue and rescusitating her...just loads of images that wouldnt go away,like I was replaying it all in my mind all over again. Made me feel so totally sick.I know why this has started again...its aways the same before she has surgery...Im not as bad as I used to be though,it used to be that every time I heard a siren and saw an ambulance with lights flashing I would just go cold and want to cry.Now its not so much.

Anyway then out of the blue I had a phonecall from the neurology specialist who has agreed to take over as Seri's local consultant.She had her notes in front of her and we had a long chat about the fact that I had a long list of symptoms but no diagnosis for Seri.She then went on to explain (very nicely) that Seraphina had Cerebral Palsy but generally neurologists dont like using that term as its so broad and so instead just deal with the separate conditions such as stiffness, developmental delay etc etc.
I have to say that during this conversation I felt physically faint,like I was going to pass out.I think it was just that on the one hand you have your suspicions but when someone actually confirms them then it suddenly seems so 'real' in a wierd kind of way.
Literally 5 mins after that conversation the speech and Language therapist and the Community Nurse turned up.........that was the most surreal thing,just having these appointments and chatting about possible extensions to the house to accomodate a downstairs bedroom and bathroom and that Seri may need a hoist eventually.I could hear myself speaking but as if from a distance,like an onlooker instead of a participant.freaky.

I still dont think its sunk in,I know it hasnt I suddenly have a thousand questions.....WILL she walk,talk even eat like other people?.Will she be able to look after herself? Ultimately only time will tell I guess but i so feel the need to know NOW, at least that she'll do ok.

and ultimately WHAT IF Id managed to keep her inside a little longer?,what if my body had done what it was supposed to?...................................I feel I have let her down.

A light at the end of the tunnel!

Well Seraphina has lost another half kilo and Phoned Sheffield to let them know...later that day I had a phone call to say her Op had been moved onto the emergency list and was going to be on the 9th October!!! so only two weeks to wait :-).Im counting down the days now as its all turning into a bit of a slog.David (bless him) slept downstairs with her last night as she was REALLY unsettled and to be honest al shes done today is cry again :-( cant be much fun for her and she sounds like her throat is getting really sore again.
I so hope that the Op works this time,Im not even letting myself think about the possibility that it doesnt.
So a good positive step forward,now all we have to do is hope she doesnt lose too much weight in the meantime and keep her away from any bugs.

Yawn!

Another night with only 2 hours sleep....am starting to need shares in Red bull!!
Last nights entertainment was provided by Seraphina-no sleep and Samuel who is intollerant to dairy and wheat and was found with his head in a box of Weeto's this equalled lots of tummy ache and runny nappies of the sort that require a plastic carrier bag to stop them dripping on the stairs on the way down.....sorry if TMI just needed you to feel ma' pain LOL!

Phoned Sheffiled today as requested and let them know she'd lost another half kilo this week :-( Nurses said if she keeps this up she'll classify as failure to thrive!).
No-ones phoned back yet today but i guess the surgeon could have been in clinic /surgery all day,who knows.
I REALLY hope someone moves her date for surgery forward soon as I dont know how much more of this I can take.............sooooooo tired

Time is running out..

5pm

Its been a stressful afternoon.The dieticians are not happy with Seraphina and told me to phone Sheffield before they did.Seraphina should be having as a minimum 1200 kcal per day but at the moment she is only able to tolerate 700.She should also be having her feed pump running at 65ml per hour.....shes only managing 50mls over 18 hours and is still being sick and dumping.I have lost count of the amount of nappies she has had today...she has just started back on 5 antibiotics too and so there is poo everywhere (well it feels like it!).So its highly likely that she will still be losing weight and if this continues she will get dehydrated fairly quickly.

I have phoned Sheffield,whose Theatre lists are jam packed apart from a possible space on the 9th October (but the parents havent decided aboout whether to proceed with surgery or not yet).The sec told me that Mr Marven is aware of how Seri is and will try and move it forward.She also told me that she wants a recent weight of Seri....shes lost 1.5kilos so far and she was last weighed 2 weeks ago.If she has lost weight again....which is quite likely,then the Secretary thinks they will probably end up taking her in and doing the fundo as an emergency.

What a horrible situation to be in :-( I just hope they manage to get her in soon BEFORE she gets too poorly...I dont want her to have to have a femoral line in again just to hydrate her.
I just feel like the clock is ticking and if something doesnt happen soon then she is going to be one poorly girl.

Hmmmm

Well,have just had a phonecall from RMS who are ordering her 'New Bug' wheelchair system.They gave me the quotation for total cost and asked for 50% deposit.I paid them and then said i qwould give them the date that I needed the buggy for (next trip to Sheffield)....is actually the 26th but I didnt want to leave it too late so said 24th October.The Rep had previously said that it wouldnt be a problem......well apparently this lady has just told me that they come from Italy and are taking a good 8 weeks to arrive!!!!!grrrrrrr!
I did politely explain that a condition of the sale WAS that i get it by 24th which is why I had checked and double checked.Anyway we left it that she would do her best to get it quickly and if there was going to be any delay then she would let us know.
I really hope they can get it to us in time....I REALLY dont want her to be having her fundo done again and then have to slump in the curent pushchair as its going to be SOOOO painful for her,she needs the support and I dont want her to be in any more unneccesary pain.

Have just had our feeding supplies delivered and once again we have no correct Jejunostomy button.....well no button at all although the delivery note says it should be there!Can you tell im not surprised....we seem to be having so many problems with these buttons and the delivery people at the moment its untrue.
Well I suppose I ought to make a start on the mammoth ironing pile which seems to have bred overnight....Seraphina is asleep,she seems to have developed a habit of thinking that 5.30am is time to get up which,after being up in the night as well means she needs a nap by 9am.Wish i could join her :-)

My Sweetie pie

Just after Theatre

Her two new tubes

The femoral line which she had the late night dash to Theatre for...



and little minkey with two boxing gloves on to stop her puling the line out! :-)

well the date for Seraphinas surgery is provisionally 19th November but the surgeon (and us would like to get it done sooner and so is going to try and re-jig his lists and call us in when he can.