I have been prompted to record some more things about everyday life. I know that I have just blogged about Hayden but I guess the last part of the story is the medication.
Hayden is now on a number of medications as I mentioned in my previous post. It is a very intensive regime, is time consuming and tiring for me.
His daily routine goes like this. Up at 6.15am to start the very slow hydration and food process. It takes about 50 minutes to eat 1/2 a weet-bix and have about 100ml milk and 100ml water. I hear you all saying why does it take so long? Well in short if he eats at a 'normal' pace he will vomit everything back up so steady and slow seems to overcome this. Not only this if he does not have food in his stomach then he will not be able to tolerate the medication that is to come next and the result with be the same. It is a vicious cycle because without the medication to come, over time, Hayden's health will go into decline and his behaviour will be unmanageable. Just try being in my shoes and working this out....2 years it took to come up with this formula. So breakfast involves up at 6.15am and finished at 8.10am. Not running around, brushing teeth etch because that also causes nausea.
Anyway the rest of the day involves continual and controlled hydration. The medication takes only moments but does mean I get up in the middle of the night. Thankfully Hayden has a Mckey button which is like a ear piercing to his stomach. The medication goes straight in here so in the middle of the night he does not need to be woken up.
Here is Hayden doing his morning medication. He looks happy enough here but that is not always the case.
Credits. Forest Whispers by Lindsay Jane. Fonts are Underwood 1913 and Park Avenue BT
Part of the medication routine is also hydration. Hayden's kidneys just leek fluid like there was tomorrow. So each day he needs to have a minimum of 2 litres of liquid. It is never ending as his eyes also require medication. Roughly 5 or 6 times a day eye drops need to be administered to avoid photo sensitivity and damage to the cornea.