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Wednesday, 2 July 2014

Mixed bag day...

Hi guys, things have been up and down again here!

We struggled again as Coo was really poorly overnight and it took quite a while to get going this morning but we rallied around and in the end...we were great!
Coo's wanted to go for a bike ride for months now. (If truth be told, I felt a little guilty out on my Carers cycle day last week as I knew Coo would have loved it and was so desperate to get out too!).
He's struggled so recently, that it's just not been possible but with things settling over the last few days, we made plans to get the bikes out this morning! woo hoo!

After the poor night,
I thought the bike ride would be off!
By lunch time Coo felt better and wanted to go! Ok we had to compromise and didn't go very far but it was out! and it was fun! Weeee!
He's been sleepy and poorly since we came back but we're both glad we went, nothing beats feeling the sunshine on your face and the freshness of the wind blowing you along on your bike! It was just good fun and passed a pleasant wee hour!
I guess it's still one day at a time here and that's ok too, good days and happy times are so prized in fact, I think they're a bit of a blessing really.
If you get the chance to try out a wee bike ride - go for it! Something that much fun, shouldn't be good for you...but it is!
It's a win-win kind of a deal!

I'm glad we had such a good day today, tomorrow's D-Day for the Spirometry test. I'm staying positive and sending happy thoughts and a wee smile your way,
Stay strong as will I!
Maz x

Tuesday, 1 July 2014

On the up...

Hi guys, fingers crossed and not shouting too loudly but...I think things may be on the up again at last!

Coo's blood results came back and his AED (Anti-Epilepsy Drug) Phenytoin levels, were too low this time. His optimum level is at the high end around 19 - 21 so for him a level of 16 is too low!
With increasing seizure levels daily and no sign of any improvement, we decided to bite the bullet and up the doses by 25mg's in an attempt to get things back on an even keel - well as even as it ever is with Coo!
So with sunshiney thoughts...

We upped the meds on Friday and a few days later, things have been a little bit better! The seizure levels are beginning to come down from fifteen overnight to eight so...result!
Eight seizures a day might seem an awful lot and it is but if you put it in context - last week, at it's worst point it was seventeen and at it's worst, Coo had thirty seizures every day for six months! It's amazing what you can cope with when you have to - it's not easy but it never is for anyone living with a difficult medical condition is it!
Coo managed to stay awake most of the day too so it's all good! I'm just happy to report, for now, things are on the up and Coo's feeling a little better so...crisis averted again!

I hope things are a wee bit settled where you are too!
Maz x