What a Day!

The Day started with me feeling restless frustrated. Justb general life stuff. Rosie woke in a simlar mood but had better reason than me that had left her with a sore bum! So she ended up having her first feed in the bath. Giving me time to get Eve washed and dressed before organising clothes for Rosie. Shouting Christina and Joshua pout of bed and chivvying them on to do their morning jobs. By 7.45 we were all down stairs, It took another 5 minutes or so to sort Eve out into her chair...I swear she had been reading Mog's story on Tia's Blog, she has also gained a significant amount of weight that does not go well with fitting into a chair that is built on a mould of her body back in July. Anyway I was nearing getting a good sitting position with room to breath when the phone rang....the school bus has broken down we wont be coming for the girls this morning! GREAT!

Having managed to get Eve sat, strapped in and feed on, Oxygen organised and bag tray attatched, we turned our thoughts to how to organise the morning.

Christina to school for 8.50
Joshua to Hospital for 9.10

Eve and Rosie to school when possible
Someone to stay with Jonathan until his Taxi arrives at 9 am.

So Iris kindly offered to stay with Jonathan. And we piled everyone else into the bus. Christina made it to school on time and the rest.....didnt!

We eventually made it to the Hospital at 9.25 Wednesday is Market Day in Boston which apparantly means that the traffic comes to a virtual standstill along the main roads between school and Hospital....Bizarre really as there doesnt seem any reason for this!

Anyway, the fact that we arrived in Clinic at 9.35 instead of 9.10 just meant we had hald an hour to wait instead of 55 minutes.....clinic was running late...what a suprise!

Rosie was happy, she likes the toys in the Pead waiting room and there were plenty of other parents who were not tired of playing Duplo with her or holding the books whilst she pointed at the pictures and words.

Eventually we got in to the clinic and Dr C was somewhat taken aback to have the girls rolled in again...we were there for them on Monday! She was highly amused that Rosie realised she had a new captive audience in yet another medical student to drag around the room at her beck and call. Shame really there is a lot of teaching opportunity in our children for medical students but instead we al just sit and laugh at Rosie;s antics and the amazing communication she has without words or formal signs. Every body though does just as she bids. On Monday she was orgsanising everyone around a table on tiny chairs, and handing out matching jigsaws and bricks and books. It was a while before anyone realised just how under her control we were.

Anyway back to Joshua, His arthritis is under good control with just brufen as and when he needs it, his astham is under good control too. She was also happy to organise a blood test for Coeliac following David's diagnosis. This of course meant we then had to trail over to path lab and wait there..thankfully not too long and Joshua is brave enough not to need EMLA cream. So we were back in the bus by 10.45 and heading back towards Joshua's school, via the petrol station as the bus was complaining it was thirsty...jolly thirsty it was too taking over £80 to fill it.

So Joshua returned to school we headed over to Spalding to Eve and Rosie's school. Eve was dropping SATS and Rosie was determined to disconnect her feed tubes as I was making do with a pump feeding bag and a piece of ribbon to tie it to the sunroof as in the manic panic I had not thought as far ahead as Rosie needing feeding mid morning. As soon as I left Rosie's side to suction Eve Rosie pulled the whole caboodle apart to feed her lap. Put it bak together rejoin it and beep beeep Eve needs attention. you get the picture. I was tired and irritable by the time David turned into the school drive! PLeased to hand over the girls and obviously in too much of a hurry to leave as we got a phone call a few miles into the journey home to ask about the spare oxygen cylinder...that would eb the one still in the bus! Thankfully I reminded them they had a spare in the cupboard.
On the way home we decided to stop for animal supplies and whilst there decided lunch would be nice too.

We eventually arrived home from the mega school run at 12.40! I got in sat on the settee and promptly fell asleep until the phone woke me as the OT rang at 3.04!

Eve's continuing changing back and recent mega weight gain means her chair is no longer working, we also need a change os seating for home and there is a possibility of using the same mould for both...trying to convince two OTs with different budgets/managers/agendas to work together is an interesting phenomena aided considerably by both being very tuned in to Eve's needs and specific difficulties but not helped by both being part time and working from centres 40 miles apart! I am sure we will resolve it though! Just Quickly is essential for Eve's well being!

So I am now trying to motivate myself to cooking dinner whilst my two most able kids seem determined to motivate me into beating them ! Why do siblings find it impossible to speak with each other without frustration for more than ten minutes?

hugs