Friday, 8 November 2013

8 th november - hop along Harry!

Well, having got the news about Harry's fracture and yet again having to digest a new set of rules to abide by ie Harry not being able to weight bare; using a walking frame to get about on and a buggy for longer distances;Increased pain relief patches; the introduction of ibuprofen (not usually allowed in cancer patients due to the possibility of bleeding and low platelets in reserve to heal!); changing plans for activities for half term: meaning no bikes. Well, we stick to our plan - heading north to stay with friends! 
Yep - we land in Scotland for Saturday tea time. It's half term, what else are we gonna do - sit at home with miserable faces! Anyhow, Harry within hours of getting his walking frame, was managing to hop along at some speed! With his pain more under control and the excitement of visiting friends, there was no stopping him and Hop Along Harry is born!
We went to the cinema for the first time and saw 'Despicable me 2'. We visited the science centre in Glasgow, which was good and interactive. Though, having a child in a buggy gave us a huge insight into the lack of thought that goes into making displays accessible and user friendly for people in wheelchairs or buggies. Many of the interactive displays were hard to get Harry's chair under adequately for him to access the display and so he did get frustrated at times. Although he did have the ability to raise himself up and balance on 1 leg, which many disabled people can not do, which did help. The world around us really is designed around able bodied people and probably by able bodied people. Even disabled toilets often have toilet paper too far away etc for disabled people to access without help.
Paul manages a brief night out in Glasgow with Ben and I manage tea out with Suzanne and shopping in one of 
the  shopping centres, which was beautifully quiet on a Monday night!
On Tuesday we head for the seaside resort of Largs. With the weather being showery we head to the bowling alley. We have never taken the boys bowling, so another first! The boys used a frame that the ball gets rolled down, so Harry could balance using this! He also won, with a respectable score of 96! Says a lot for mum and dad whom had use of the bumpers which stopped the ball heading for the gutter! Whilst at the bowling alley we discovered that the manager, Leanne knew Paul's brother who sometimes works on the local power station. She knew about us and has read this blogg too! She was lovely to the boys and gave them a party bag of goodies to take home!
Callum insisted on visiting the beach, when the rain abated and the sun briefly appeared! The beach is very gravelly and not really sand castle material. But Callum didn't care! Harry got cold quickly though and him and daddy retreated back into the bowling place for hot chocolate!
We headed back home on Wednesday, having had a good time away. Harry really tried to join in with Adam, Callum and Flynn, but at times he just couldn't keep up with them and retreated to drawing in the playroom. He did get tearful and upset at times at not being able to walk and run about and it's hard getting the others to always do activities that include him, but on the whole he managed remarkable and that cheeky smile not far away!
On the Thursday we head to the cinema again as its kids club and Harry really wanted to see the movie animation 'planes'. He loved the film and Dusty the crop sprayer is his new hero!
Friday is the start of birthday celebrations as we head to Grandma and Grandad's. we take a cake for grandma to share with Callum, as its a celebration of both their birthdays! Callum is allowed to open his birthday present from grandma and grandad - a fireman Sam duvet and some money for his bank account!
On Saturday the boys help me mix Callum's cake mixture and I decorate it later whilst the boys have fun at Granny and Grandad's. The cake is for Callum's birthday party, which has fireman lego on top! 
Sunday is the day of Callum's birthday party - his wacky warehouse party. My goodness we have had a massive build up and it was no wonder that he had a massive paddy once home in the afternoon. He had a ball at his party, but he needed a rest and slept for 2 hours - unheard of! Once awake he was desperate to open his presents and he had some lovely things - thank you everyone!
Callum continued with birthday celebrations on Monday, attending the science fair at the courthouse, with his friend Fin whom couldn't make his party, followed by lunch and play at his house and another candle to blow out on a bun! 
So eventually we get to November 5th, Callum's actual birthday. We were prepared and daddy had made up Callum's play mobil firestation the night before, so he was able to play with it immediately! He was so chuffed with it - one very happy boy!
Having been off nursery the previous week, I send Callum late morning. He has more cake there, cards and a small present and home to fish and chips and more presents! What a very lucky boy. He was sad at bedtime though and was confused why he had not gone to school as he was 4! It's hard for him to comprehend that he will still be 4 when he goes to school, but he has 10 months to wait! What is even a month to a 4 year old!
Harry stayed off school on Monday, though we made a visit so he could get some new reading books and see his head teacher. Having discussed his care needs and almost completed a pirouette on his walking frame, we are told that once a risk assessment is complete on Tuesday, Harry could go to school on Wednesday! Yippee! I wasn't sure they would have him with an unprotected fracture!
Harry spends Tuesday - Callum's birthday being entertained by Jackie - a Playworker, whom is fabulous and in the afternoon a friend Cathy - whom had bought a pirate doll and together they sat for 3 hours making it!
By Wednesday it was good to get Harry to school and Callum to nursery! I had an appointment with Jan the psychologist atMartin  House Hospice.  It was good to off load on her and try and get a new direction for our lives. We really have to adapt and constantly change the path of thoughts we are on and the way we manage Harry! It is exhausting and I don't allow space  for how much emotional baggage we really do carry and how this effects us. 
Today is Friday and we were in fracture clinic for a review. Our McMillan nurse attended, which I was pleased about as I had feared that orthopaedics would not be aware of Harry's medical history. Harry was sent for an x ray and thankfully his fracture is healing well. He is now allowed to weight bare, but NOT allowed to run, cycle, jump or fall for 6 weeks as the risk of the bone being damaged and breaking again is high. This is a tall order for a boy whom is raring to go. It's gonna be like holding back the grey hound who has sight of the rabbit at dog racing! 
We have the carrot of going to Lapland though for the day in December as any further breaks could likely lead to an operation being needed and thus no Lapland! Lapland is a carrot for us all, it spurs us on and gives us strength and courage to continue. It gives us an aim and a bloody good one at that! 
Harry's passport has already come back completed, just awaiting Callum's and the trip should be in the bag!
The boys know about the trip, but also know we need the passports to come back to go!
Radiotherapy remains on hold whilst Harry's fracture heals. We do very, very much hope with the healing of the fracture that the pain goes and those pesky cancer cells stop multiplying. If the pain goes, then we can delay Harry being  zapped by more radiotherapy and avoid the sickness that comes with it a bit longer! I would so very, very much like to just get to Christmas without anymore hitches! I know we have made it passed Callum's birthday, but again it's had hiccups. 
Can I also ask for clear skies tomorrow as we head to a firework display and bonfire and hopefully a cheeky BBQ sausage! 

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