DISNEYLAND WAS FAB!!!!! After a quiet few days at home, and me going to work for 2 of them, we set off to Disneyland Paris for Sarahs 'Starlight Childrens Charity' wish. The train was at 9.13am from Ashford International in Kent, and after a nights stop at my brothers in Meopham, we got up early to check in by 8am. Much excitement, and a tricky climb on to the train up 3 steps over a huge gap later, we were on our way.We arrived at 12.13pm, exactly to time, and dropped our bags off at the Disney Express luggage drop (they would take our bags to our hotel for us, so we could go straight into the park). We got a disabled pass from City Hall which meant we could jump the majority of the queues and I have to say it saved us hours - IT WAS PACKED!!!! We walked up main street and the sight that greeted us would have brought a lump to the throat of the most hardened of people - a giant Xmas tree was in the middle of the square complete with presents under it, and SNOW!!! It was even snowing when we walked along the road (piped in, I know, as there wasn't a cloud in the sky, but lovely all the same!!)The castle at the end was covered in twinkling lights, and I have to say I gulped back a tear or two for a moment - so lovely to be on holiday again after the year from hell, and at this magical time of year, it was extra special.
All the months of worry melted away for 3 wonderful days, and although it was almost as cold as Santa's home at the north pole, we had a great time. Christmas Eve dinner was booked up for us at Mickey's Christmas Cruise Dinner, and we saw all the characters whilst we ate. Christmas morning breakfast was a character breakfast, so autograph books were at the ready. We had lunch at Planet Hollywood, and dinner at Annette's Diner, with waitresses on roller skates. Katie and I went on the scary rides - Rock'n'Roller Coaster, Hollywood Tower of Terror, Space Mountain, Indiana Jones and the Temple of Doom - Dave and Sarah came on Buzz Lightyear, Big Thunder Mountain Railway, Aladdin's Flying Carpets, Snow White and the Seven Dwarfs, It's a Small World, Star Tours and Haunted Mansion. Straight to the front, and a few hairy moments getting Sarah on and off the rides - a few tantrums, and a few giggles, but it was great. Only thing spoiling it were the French!!! B"""dy French - so ignorant - see a wheelchair and stop in front of it - don't move, apologise, or get out of the way - queue for the loo - HA!!! Jump in and ignore everyone else waiting in line. By day three, I'd had enough quite frankly, and wanted to just ram the wheelchair into their ankles!!! Even the staff on the rides weren't happy in their work - wouldn't happen in America - fixed grins reign supreme over there, and nothing is too much trouble.In France, it seems, that Christmas spirit is wearing a bit thin!!
Anyway, we made the best of it, and even managed a swim on Xmas day in the hotel pool. The Fantillusion electric parade on Christmas night was a great way to end the day, and the journey home was fine, and speedy. We do feel a bit cheated out of a Christmas rest, and are still absolutely shattered, but Sarah had a good time, and as it was her wish, we must respect that!!! But next year we are staying home.
Physio went by the way side, and Sarahs foot and leg swelled quite badly on the way home, but she has been moving it a bit more since we got home and it has gone down. She is back to the 'I can't stand on it' mode again now though, and refuses to put any weight on it, even when I nag.She has promised me she will try tomorrow - fear is still in the equation, although she refuses to admit it. Lets hope Piia, our local physio, can work her magic, or 2009 will be as long as 2008 has been, but for different reasons!!!
Sunday 28 December 2008
Wednesday 17 December 2008
Wednesday 17th December
I've been a bit slow on updating this blog just lately but I suppose that is probably because I no longer spend all day sitting in a hospital trying to pass the time of day!!
Well, following last weeks blog its been full on - left UCH last Monday evening and by 9am Tuesday we were in Stanmore being assessed for hydrotherapy and physio. No peasce for the wicked! They were really busy and we nearly didn't see anyone at all, but eventually after complaining we had got up so early to get there, we saw Sarah, a student physio on her last week of her placement. She gave the nod that Sarah was a suitable candidate for hydro, and we were sent home until the following day.
Wednesday was a later start and we were booked in for hydro at 11.30 and land physio at 2pm.
Hydro was wonderful - Sarah the fish returned to our lives and the constant grin on her face was a pleasure to see.Apart from when Sarah(physio) said she was going to time Sarah running round the pool - Sarah looked horrified and said 'Run?! Me?!'.Anyway, she did run, albeit slowly and it wasn't as bad as she thought!!
Land physio was less successful - she still has trouble getting her heel on the floor and basically that is what is stopping her walking.Parallel bars, scales to measure weight bearing, swiss balls and wobble boards have all been used over the last 7 days and today we had a bit of progress at last. The last week, after Amy the land physio had nagged her senseless, Sarah started to do proper exercises EVERY night. She even called me upstairs if I forgot.This has helped immensely. On Friday, Sarah managed to get 24.5 kilos of weight through her foot with Amy holding her knee - today, without being held, she got herself upright, not leaning back as normal, and 29 kilos was acheived - 50% of her body weight for ooh, about 3 seconds!! Not much, I hear you say, but in Sarahs world that is HUGE. The scales didn't wobble either, it wasn't a bounced 29 kilos, but a constant pressure, and I am soooo pleased!!Yesterday I asked her to walk on my hand and I could hardly feel any pressure. Today she did the same and it was firm pressure pushing my fingers into the ground.Go Girl!!! 2 more days of this to go, and I only hope she continues. She wants to go swimming properly at home now, and today she did widths of proper swimming strokes - including butterfly, and could still do them all - I thought she would have trouble but it seems she is fine. Only thing she can't do is walk up the ladder of the pool to climb out!!We'll have to enlist the help of the disabled hoist at the local pool for the time being!!
On the social front, she sang in a Christmas carol concert last Tuesday evening with her school which was lovely, and had a friend sleep over Friday night. Saturday evening she went out for pizza with the same friend and Sunday she spent the day with another friend putting up her Christmas decorations while dave and I watched Katie play indoor hockey all day.Yesterday was the Stanmore Xmas party with magic Dave, and last Friday was the UCH Xmas party in town.This afternoon we had a flying visit to Trafalgar School to see her old teachers to let them know how she has been getting on.Tomorrow she is going to the pantomime with the guides, and Tuesday the Xmas festivities begin with a trip to Uncle Bobs for the night en route to Ashford International Station to catch the train to Disneyland Paris - I CAN'T WAIT!!!!I'm more excited than Sarah!!!
Well, following last weeks blog its been full on - left UCH last Monday evening and by 9am Tuesday we were in Stanmore being assessed for hydrotherapy and physio. No peasce for the wicked! They were really busy and we nearly didn't see anyone at all, but eventually after complaining we had got up so early to get there, we saw Sarah, a student physio on her last week of her placement. She gave the nod that Sarah was a suitable candidate for hydro, and we were sent home until the following day.
Wednesday was a later start and we were booked in for hydro at 11.30 and land physio at 2pm.
Hydro was wonderful - Sarah the fish returned to our lives and the constant grin on her face was a pleasure to see.Apart from when Sarah(physio) said she was going to time Sarah running round the pool - Sarah looked horrified and said 'Run?! Me?!'.Anyway, she did run, albeit slowly and it wasn't as bad as she thought!!
Land physio was less successful - she still has trouble getting her heel on the floor and basically that is what is stopping her walking.Parallel bars, scales to measure weight bearing, swiss balls and wobble boards have all been used over the last 7 days and today we had a bit of progress at last. The last week, after Amy the land physio had nagged her senseless, Sarah started to do proper exercises EVERY night. She even called me upstairs if I forgot.This has helped immensely. On Friday, Sarah managed to get 24.5 kilos of weight through her foot with Amy holding her knee - today, without being held, she got herself upright, not leaning back as normal, and 29 kilos was acheived - 50% of her body weight for ooh, about 3 seconds!! Not much, I hear you say, but in Sarahs world that is HUGE. The scales didn't wobble either, it wasn't a bounced 29 kilos, but a constant pressure, and I am soooo pleased!!Yesterday I asked her to walk on my hand and I could hardly feel any pressure. Today she did the same and it was firm pressure pushing my fingers into the ground.Go Girl!!! 2 more days of this to go, and I only hope she continues. She wants to go swimming properly at home now, and today she did widths of proper swimming strokes - including butterfly, and could still do them all - I thought she would have trouble but it seems she is fine. Only thing she can't do is walk up the ladder of the pool to climb out!!We'll have to enlist the help of the disabled hoist at the local pool for the time being!!
On the social front, she sang in a Christmas carol concert last Tuesday evening with her school which was lovely, and had a friend sleep over Friday night. Saturday evening she went out for pizza with the same friend and Sunday she spent the day with another friend putting up her Christmas decorations while dave and I watched Katie play indoor hockey all day.Yesterday was the Stanmore Xmas party with magic Dave, and last Friday was the UCH Xmas party in town.This afternoon we had a flying visit to Trafalgar School to see her old teachers to let them know how she has been getting on.Tomorrow she is going to the pantomime with the guides, and Tuesday the Xmas festivities begin with a trip to Uncle Bobs for the night en route to Ashford International Station to catch the train to Disneyland Paris - I CAN'T WAIT!!!!I'm more excited than Sarah!!!
Monday 8 December 2008
Monday 8th December 2008
Last week we went back to UCH for post-chemo tests, and took Sarahs bad cold with her!! Dave gave Sarah a cough which developed into a full blown cold and Wednesday morning she woke up hardly able to breathe because of a sore throat! At least we were going into hospital, so the doctors could have a look at her! By the time we eventually arrived at UCH after a terrible journey in bad traffic in an ambulance, Sarah was feeling lousy - the thought of having a canular, mixed with a bit of travel sickness from the bad driving of the ambulance driver and her cold didn't help!!On arrival, I enlisted the help of Jessie to be with Sarah while she had the canular put in, but after a few discussions, it was decided it would be fine to do the GFR Kidney test through her Hickmann Line and the chest scan didn't need any dye anyway!! As soon as she knew she didn't need any needles, she felt OK, and happily went to the playroom until the first test! Thursday, we were back for an Xray of her leg, and blood tests and in the afternoon there was a great Xmas party in the playroom laid on by Credit Suisse. The magician they had was a member of staff from the bank and he was amazing - I told him he should turn professional - I am still reliving his tricks, and the card trick where he cut open a kiwi fruit to reveal a card that sarah had signed earlier is still puzzling me!!
Came back in to UCH yet again last night to have Sarah's Hickmann Line removed at last - 7 months attached to her chest and we couldn't wait to get rid of it!! We didn't have any trouble with it compared to some but it is time to go all the same! Sarah was last on the list, so we were all ready for a long afternoon of nil by mouth and rumbling tummy, but at 1.30pm she was taken down. By 2pm she was awake and on her way back to the ward, and starving - even a general anaesthetic doesn't come between Sarah and her stomach! She has drunk, wee'd and eaten so we're good to go - just waiting for Dave to arrive to take us home, and our stays at UCH are over - just day care in future which we can handle. Got the news from the doctor last night that her chest scan is clear - so all good. Bloods are on the up, which is why she is feeling well, and the physio Julie is so pleased she is now making an effort with her exercises, and she is seeing some progress! Roll on Stanmore tomorrow and hopefully the swimming will give her strength and she will be walking by Xmas!
Came back in to UCH yet again last night to have Sarah's Hickmann Line removed at last - 7 months attached to her chest and we couldn't wait to get rid of it!! We didn't have any trouble with it compared to some but it is time to go all the same! Sarah was last on the list, so we were all ready for a long afternoon of nil by mouth and rumbling tummy, but at 1.30pm she was taken down. By 2pm she was awake and on her way back to the ward, and starving - even a general anaesthetic doesn't come between Sarah and her stomach! She has drunk, wee'd and eaten so we're good to go - just waiting for Dave to arrive to take us home, and our stays at UCH are over - just day care in future which we can handle. Got the news from the doctor last night that her chest scan is clear - so all good. Bloods are on the up, which is why she is feeling well, and the physio Julie is so pleased she is now making an effort with her exercises, and she is seeing some progress! Roll on Stanmore tomorrow and hopefully the swimming will give her strength and she will be walking by Xmas!
Subscribe to:
Posts (Atom)
