beepadeebeep

Ok so I think I have become a little over anxious!...who decides the right level of anxiety to deem anyone over or under anxious by the way?
Anyway, since Eve's struggle to maintain breathing I have become a little bit of a number watcher. I find myself struggling to leave her unnattended in another room without being attatched to the SATS monitor. THen I have to drag myself away from watching the numbers. I have made myself accept that one round of beepadeepeep is ok, two my ears prick and on the thirdI go and check....of course at 1am the beep adeepeep always stops as I enter her room! I then watch as the number slowly creeps back up to a decent level and go back to bed.

4 am this morning I was mildly irritated to realise it was the heart rate slowing down that had dragged meown the stairs! even more irritatedly I had not pleasant drifts of thought to the "professionals" who are holding up the building work that will allow us to install a lift so I can get to her without quite so much pain.
By this time David was well and truly awake and decided to have a bath...I crawled back under the duvet to close my eyes for another hour I must have got another 3/4 hour good sleep as I didn;t hear David get out the bath, it was Eve's grizzle that brought me down again...David was dozing on the settee so I sent him back up for another hours kip, sorted a load of washing and made a coffee before wrestling grizzle pants from her wires and tubes.

So I was pleasantly suprisedto discover that when I sat with my coffee and laptop...yes Rhys I do get the occasional opprotunity to be normal! that Tia has already blogged this morning...so we had a nice chat before the rest of our respective households awoke!

The day was not full of pleasant suprises though...not sure if I was actually disappointed or just frustrated with what did go wrong.
Took cheap run around car to garage to get engine tuned...it was not running as smoothly as it might. I had rung garage last Monday to find out what day they could book us in to guarantee being able to see to it as soon as I got there. Garage man assured me 9 am today would ensure it was seen immediately. Of Course I got there to much tooth sucking and intaking of breath...phw can't see it immediately love! Uuuum yes you can....you said if I got here at 9 you would see to it and be sure I was on my way before 10.30. OOooh I dont think so. Well I know so I explained our circumstances to you and you said you would.....he did....unfortunately though the problem was not electrical but mechanical and they would need to take the head off and strip it down to find the problem...sucking in of breath (nigh on teeth too I think) gonna be the best part of £500 to find the problem me love......oh well I think we will run it till it dies a natural death then thanks..what do I owe you for today....look of disbelief and hand out for a fiver!

so I was home before 10.30 to discover the postlady had been. A letter from the Council's architect....wonder if they heard me this morning????? oh perhaps not....they have to change the spec for the tenders because the OT and Council have said they will not fund a height adjustable bath for the girls AND a closimat toilet forJonathan....( apparantly either Jonathan can have his bum washed or the girls can have a bath not both) As they are funding the toilet we cant have the bath....now is that my imagination/unreasonableness/greed/stupidity???? or is there a problem with that and the idea of an individual needs led assessment???

I have tried to contact the lgo today but he has not tried to contact me back...wonder how you go about complaining about the ombudsman???
I guess this change of spec will cause yet more delays?? what on earth are we going to do???

Oh well this afternoon brought my new portable Sats machine with alarm...and the power lead for the old one....only it wasn't..it was the wrong powerlead...howver I found the old one so am now going to send this back for a refund.....very pleased about that as a power lead for a SATs monitor is £150!
Oh and to cap off the day our carer is leaving! Anyone want a job 4-7 6 evenings a week????

hugs

I do not know what the future holds but I am glad I know who holds the future!