The Past Week

Last Tuesday we headed for the Hospital again for a check up to see how Skye was getting on with his plethora of medication. Our days are filled with alarms sounding so that we get the right drugs in at the right time. It is pretty much non-stop!

IMG_5010.JPG

As we had been warned, Skye began to display signs that his swallow reflex, which includes the closure of the trachea to prevent fluids going into the lungs, was starting to deteriorate. When he drinks less dense fluids like water, it causes him to cough, so we now have to add a thickening agent to his drinks. We have also had to increase his analgesics to keep on top of his pain. Apart from that, and of course being unable to move from the neck down, he continues to be the most remarkable young man with a great deal of charisma.

Having an itch which you can't scratch must be the most frustrating thing. Unfortunately he experiences this often due to the tingling sensation brought on by the neural damage, which causes the itching. He has absolutely no movement left in his hands and legs, and apart from calling for assistance, he has no alternative to deal with it.

The cousins with the day's delivery of loom before connecting and storing for the 'roll out' on Friday!

The cousins with the day's delivery of loom before connecting and storing for the 'roll out' on Friday!

We were back at the hospital for the next round of Avastin on Thursday, which went smoothly and then home to spend time with the cousins from Devon. They all had great fun learning magic tricks and demonstrating them under the ever critical eye of Skye! Daddy scored a massive 0 out of 10 - because he was rubbish! Dylan however was pretty impressive with a score of 1000 out of 10 - serious praise!

Friday was an exciting day! With the Ice Cream machine in place, courtesy of Jamie and Tasha Waldman and the artistic talents of Gabriel Drewett, we set off to Millets Farm Centre for Skye's ice-cream prank and the laying out of the looms. Skye had a huge amount of fun, and when we finally told him at 5.15pm that it was time to go home, he burst into tears. So many people worked together to make sure everything came together and we are truly grateful to all involved. Making the box, painting the box, transporting the box, getting all the required gadgets, and co-ordinating the day was a real team effort. A huge thank you to David and his crew from London for coming along to do the filming.

Getting our tongues ready so that we can tuck into the ice cream!

Getting our tongues ready so that we can tuck into the ice cream!

Saturday was a much quieter affair, just spending time at home, opening the mail, and connecting loom bands with the help of some friends. On Sunday, it was time to tick another box as we travelled to Bibury to the Trout Farm to catch some fish. Skye loved the experience we had in NZ last year and he was keen to do it again. Not confident enough in my own skills to guarantee a catch at any old location, going to a fish farm is ideal!

"Five daddy, I want five, because I am 5 years old!"

"Five daddy, I want five, because I am 5 years old!"

And so it was!

And so it was!

It was lovely to be able to share the day with Uncle Simon, Tess and Cordy, before they winged their way home.

It was lovely to be able to share the day with Uncle Simon, Tess and Cordy, before they winged their way home.

Behind all the excitement is of course the concern surrounding Skye's condition. When he announced at breakfast that he could see two tv's instead of one and last night, that Daddy had two heads, we record yet another sign of the deterioration that is slowly robbing him of his existence, and therein lies the stark reality which we have to face every minute of every day.