So we all woke up on Tuesday morning after a reasonable nights sleep....well maybe L didnt get quite such a great sleep as her bed had been slowly deflating all night. Thankfully she was not too upset by it...nor by Rosie waking up and throwing bells at her! I extracated Rosie from the bedroom and left her to go back to sleep a while. Having first pumped the bed back up.
Once Joshua and M were up and dressed they headed out to play in the snow, building a snow man and giving him a shovel....I assume in the hope he may clear the decking and pathways....he didnt I am sad to say!
Christina awoke and came down, declining the offer to join the others outside she stayed in to prepare food for the kittens and then for Eve! David came down eventually then L was up and soon the house was bubbling...I love having people here. It is so good to share happy times together. The kids all came in and headed off to play upstairs. David headed out for last minutes buys, veg and meat and a last minute present for the kids.
Enjoying the company of good friends the day passed far too quickly. And before long we were talking about preperations for them to go home the next day.
Getting children to bed that night was more tricky, Christina desperatly needed some good sleep but M and Joshua were not keen on sleep. Unfortunately they were not good at keeping their voices down either and much complaining from Christina bout the unfairness of bed times! Soon though they were all in bed and L and I managed to wrap and label a good portion of the presents....well L wrapped them and I labeled them...wrapping presents is not my FORTE!
It was good to spend the time together, I hope L's knees didnt suffer too much. Thanks so Much L!
And so Wednesday Dawned, very cold, some snow flurries in the night had replenished some of the snow on the decking leaving it less slippery, the same could not be said for the lane, nor Tesco's car park apparantly. David set off early to tesco, haveing been unable to park the day before, he managed to get the fresh food we needed and some sausages and burgers we really didnt! I had ordered gluten free ones from the Butchers, made especially for David and Rosie, saving me the need to cook two different kinds...never mind my freezer is now full of sausage and burger!
All too soon it was time for them to head off. A wonderful couple of days together, the children enjoying one another's company too, and looking forward to our next get together, hopefully in May for Rosie's 18th!
Christina was also heading off to the pantomime with Action for Young Carers so Iris and I were alone with Rosie, Jonathan and Eve, We had a good time too. Until the phone decided to ring itself silly. How many professionals can need to speak to us two days before Christmas, oh and some nice calls from the Charity funding Rosie's Dream. Then a really thoughtful call from Rosies consultant, the one who had been sick on Monday. He appologised for l;etting us down and said he thought a telephone consultation would be the best thing.
Apparantly all the biopsie's had been clear! That was a huge relief, no underlying disease or nasties going on. He was however very concerened about her bowel difficulties and wanted to trial a different laxative, he gave me the details to request a prescription from the GP. Unfortunately our GP's surgery has it's own dispensary and prescription requests go through the pharmacist, I knew they wouldnt prescribe without something in writing from the consultant so I made sure I had a number to refer them to. My C's Seceratary is wonderful so I had no qualms about asking them to ring her. Then we talked about Rosie's swallow. This has been getting worst since the summer and since the investigations in November it has been really deteriorating and lots of coughing and gagging with eating. Some days she seems to cope really well other days she eats nothing! Mr C was really worried about the risk of aspiration, and felt this could be a really serious issue for Rosie. He also felt that the swallow difficulty was a neurological deterioration rather than mechanical fault. He wants us to limit Rosie's Oral intake to tastes and go back to enteral feeds for her nutrition! I did not think Rosie was going to deal with that very well but I have to say I have been pleasantly suprised she has not actually wanted to eat much, yes she still wants to ask for it, but hoards it in a bowl. She is deffinietly coughing more and more when she does eat orally, and seems to have loads of wind at the moment bubbling the milk out of the tube on two occasions! But we are manageing to get 10 100 ml boluses into her from waking to sleeping, so two days in and we are managing! Not sure how school will cope, and mental note to self to remember to contact the medical advisor to ensure that the care plan is in place! but so far so good!
Our traditional Christmas Dinner on Christmas Eve went well. I seemed to spen a lot of time in preperation, Joshua did all the veg and potatoes, Christina made the cheese sauce for the leeks and helped to keep on top of the clearing up. Then it was time.....Turkey on the Table, veggies out all around the table and Christmas starts here! Iris had come to share the evening with us which was wonderful. Everyone ate too much, felt fit to burst and then ate Christmas Pud! Joshua and I had made some wonderful gluten free Christmas puds and we enjoyed one of these!
Once again bed time came around and reluctant children were packed off to bed whilst we tried to get the presents round the tree. Stockings were left outside bedroom doors as Joshua and Christina were too excited to sleep and Father Christmas would not have left the presents had he had to enter the room whislt they were awake!
Eventually we crawled into bed just before 1 am!
The Christmas Day was heralded in by the beep beep of a Sats monitor and the bang bang of Rosie;s feet on her bed almost simultaneously!
I will need to do a picture blog of the events of this week. Time has been limited for blgging and the need to catch up was greater than the inclination to sort photos! Our Minibus did some spectacular Ice Dance attemtping to get to the Christmas Morning Service, but we got there, all be it slightly late. But in time for Joshua and Rosie to help to lifht the Advent Candles! Rosie wearing a dramatic red sparkly dress made sure she circulated the congregation to get maximum complements not to mention hugs!
Christmas afternoon saw the children enjoying their presents, Joshua building his Robot, Christina on the computor, Eve listening to stories on her Iteddy and Rosie listening to stories read by Mum!
All in all it has been a lovely Christmas, memory building for the future!
Happy Christmas one and all....and praying for a wonderful 2010!
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment