Today we sit in the children’s ward at a hospital closer to home. Only a 20 minute drive. We have the whole bay to our selves. It’s the 29th of May 2017 and Kade is having his fifth round of IVIG. No more traveling to Edinburgh which takes an enormous pressure off. I was anxious of the move to a new hospital, however I am relieved to find the staff here just as kind and accommodating. Kade is of course happy as the WiFi here is much better than the other hospital. Those are the kind of things you want your 13 year old to be concerned about. It makes my heart happy for my son to have such thoughts.
Kade is now attending school for one full day a week and one half day in the support centre. He is even attending one lesson within a class environment. The week he has his treatment he does not attend due to fatigue. Thanks to his guidance teacher Kade is able to access his education at a pace that suits him.
He now opts to use his electric scooter rather than his wheelchair. He is getting stronger and his tic is now just a small head rock from side to side. His walking is still not of a normal motion and he cannot yet run. Thankfully his walking is not as impared as the video in my previous post. I believe that one day he will be completely able bodied once more. I have been giving him a turmeric supplement since March which, from what I have read, aids in the healing of the brain as it is able to cross the blood brain barrier.
He is having weekly physio at the moment using machines to build up his strength. His stamina still has a long way to go yet. He tires much quicker than before he was unwell and is tired for longer too.
I don’t know how much longer it will take for him to fully recover but I feel incredibly hopefull that one day we will look back and all of this will be a distant memory.
Through out all of this my son’s mental health has been paramount in my thoughts. For anyone going through this kind of illness or who has a child with a similar condition. Do not be afraid to speak your mind. If you feel something is not benefiting yourself or your child then say so. You know best. You are the one living through this. The opinions of others are just that.
If you are not getting what you want or what you need keep fighting because you will succeed. It took five months battling with the DLA to get the support we need. It took hours of letter writing, information gathering, phone calls and the help of an MP but it was worth every second. I was able to defer college and be here for my son.
Today I was given all the dates for Kades treatments right through to December 2017. Every four weeks my son will receive anti bodies from thousands of people. All these people will never know they saved my son in every possible way. They gave him a chance at a future what a gift to give, and what a gift to receive.
It’s through times like this that you cannot expalin what you are feeling. When you seem to be lost some how and cannot explain where your head is at. Seeing things you cannot unsee and feeling things you cannot unfeel. The highs are further than you ever thought you could reach, the lows insanely disturbing. It gives you an insight to a place in life you never knew existed. It is a blessing and a curse. It is a time where you feel everything and nothing, all at once.