Wednesday 4 September 2013

Wednesday 4 th September 2013

Harry was supposed to see his consultant last week at LGI, but we found out she was sick and the appointment was cancelled. The sun was shining and it was the last week of the holidays, so not ones to waste the opportunity to have fun, we took Callum out of nursery and went to Stockeld Park near Wetherby. They have had a summer adventure themed park, now closed in preparation for their winter wonderland! I think a lot of it remains the same really in winter, but with more sparkle and Santa of course! There was an enchanted forest with lots of little play areas to keep the children entertained, pedal go karts, a giant bouncy pillow, a giant inflatable slide, outdoor play equipment and a maze! The boys loved it! Can't wait to see their winter wonderland! 
On Thursday we met friends at Golden Acre Park, both boys took their bikes. Harry is keen to go off racing ahead, until he spectacularly came off his bike, sustaining wounds all over! Having patched him up a little, he very bravely got back on his bike! He has basked in the glory of his war wounds, but his knees are still a scabby mess!
We have kept Harry at the same strength of fentanyl patch 50 micrograms. We don't dare reduce it again! This level of pain relief keeps the pain at bay and enables Harry to jump around and be himself!
Since he does sleep in, in a morning I was concerned about him missing school and getting behind with the basics and then having repercussions on him not wanting to go to school. Anyway, having had a meeting with the new head I feel support is going to put in place to enable Harry to maximise his time at school and for him to have a positive experience! 

Harry had his 6 th birthday party on Monday a visit to diggerland! A fitting way to finish the summer holidays! 
Harry had 3 boys from school and 3 friends, whom he has known since he was a baby. He also invited Michael so that Callum would have a friend too! With 9 children and 10 adults, I'm not sure whom had the most fun, the adults or the children! With smiles all around, apart from when in deep concentration mode on the diggers or the go karts, fun was had by all! The weather was good, but a little windy and the dust from the robots being driven on the dry sandy soil, felt like the Saharan dessert! 
The day was rounded off by fun on the dodgems, each child having a competitive adult with them = lots of bumps! Then it was ice creams and for the less ironed stomached a play in the indoor play area and the courageous ones went back for more twists and turns on spin dizzy! A great birthday celebration. Diggerland did us proud yet again. Such a lovely, warm and friendly place! Thank you diggerland!
Tuesday = day 1 of the Autumn term! Year 1! School again!
Harry started off the day waking unusually early, following a new fentanyl patch being administered. Having put it on later than usual the night before, coupled with him getting up and moving around earlier than usual made his stomach unsettled, the result being projectile vomit around 9 am!
Harry was keen to go to school an hour later despite this set back, but I wanted him to eat and keep something down before school, so following toast and no more vomit he arrived in school for 11.15 am, bright, excited and raring to go!
Having got Callum in nursery too, it felt very quiet back at home. I felt quite emotional really! Quiet means time to reflect! My boy has made it to year 1, not something we had much hope of a few months ago or even a few weeks ago, when Harry was being sick again. Harry had his 6 th birthday party, again another milestone, enormous in fact. 
Tonight another milestone, Harry started Beavers! I emailed the colony back in February, when the future was bright and  filled with hope, I'd forgotten about it until an email arrived last week saying that Harry had a place! I stayed 10 minutes with Harry, then left him to have a cuppa with a friend whose son was also starting beavers with Harry! 
I don't know how long Harry will remain as he is and able, but to continue to give him opportunities and make his life meaningful is paramount to us! 



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