At last a....Sunny Day!

Well, the sun is back this way for a visit!
It's been so wet and horrid this summer I wondered where it'd gone!

Coo's in bed and I'm ever so glad we got the seizure alarm as it makes things so much more easier.
I can take the handset into the garden with me to at least enjoy the sunny day however long it lasts.

Still no Harry Potter yet, but we're still working on it!

Tonight we've got our club, it's held in our local community centre and it's a bit of a social thing really.
We began the group along with a friend as there were quite a few people with health problems or additional needs living locally who wanted somewhere to just hang out and have a bit of fun once a week.
A quick note to our community centre and the club was born!
We have 10 people who come along every week, I get to chat,drink tea, singalong to some music with the others and Coo gets to play a few games of pool or table tennis.

So that's why Coo's asleep just now, if he has a sleep in the afternoon, he can stay awake (and seizure free)long enough to let us both get out to 'play' tonight!

Seriously though, it's a hassle free night out we both enjoy!

maz x

Cinema: To go or not to go....

We've been trying to get to the cinema all week to see the new Harry Potter movie without success.
Coo's been having a rough week again - no sleep and lots of seizures, he really wants to go but needs to have a settled night or at least some sleep before we're brave enough to chance it!

I'm afraid with no sleep and lots of seizures the night before AND a nice warm, dark cinema, it would be just about impossible to keep him awake and the minute he dozed off: he'd start to seize so no Harry yet again today!

Never mind, I'm sure it runs for weeks yet so we'll get there and until then there's always the trailer!

maz x

Back on the see-saw...

We're struggling a bit this week.

Coo's A.E.D.'s (Anti Epilepsy Drugs) have gone toxic....again.
The dreaded see-saw effect.
This means there's too much drug in his blood stream and he needs to reduce his meds again.
We're both shattered as Coo's had an increase of seizures over the last few nights.
I only hope things can settle down as we don't see the Neuro again for another 6 months.

Hopefully things will be more positive next time.

maz x

Sad days...

We got word my cousins beloved daughter who had cerebral palsy has died.
She was a beautiful girl and only 26 years old.
It's such a shock for us all.
Memories of Laura, laughter, full of fun and always giggling.
God bless and keep her now she's far from us.
Amen

maz x

Our O.T. visit....

Well, our O.T. came, she wants us to consider putting an extra doorway at the top of our staircase to try and stop Coo getting onto them while in seizure.

We're now waiting on someone coming out to measure things up and see if this would be possible.
I think it's a good idea as Coo does escape pretty regularly from our bedroom while still having seizure activity and full seizures anywhere on the stairs are not really a good idea!
We'll see what happens.

maz x

Hectic...

Well, as if things weren't hectic enough this week our OT (Occupational Therapist) has phoned and asked to come out tomorrow.
I think it's about last months Social Services review of our Direct Payment as the worker raised some concerns about equipment.
We were using a baby safety gate to try and keep Coo in our bedroom at night during complex partial seizures where he is mobile and goes wandering!
Anyway, our O.T. thinks a child safety gate is not the answer so I guess she's coming to explore things further.
I suppose we'll find out more tomorrow!
maz x

settled...

Well, thankfully things have started to settle down and are getting back to normal, well normal for us anyway!
I'm glad Coo only drinks occasionally as I'd probably read the riot act if it was more often.
So last week the stress was surrounding the wedding and this week?
Well, we've got a Neurology appointment on Friday so this week won't be hassle free either!

I've tried to divert Coos attention form the Neuro appointment by booking us on a 'Heart Start' course this week.
It's a free course running locally teaching resucitation so I thought it'd be a good idea to learn!
I'm not sure how successful it'll be at keepin his mind off the Neuro on Friday but at least it'll give him something else to focus on, well that's the plan anyway.

Sometimes, it seems like we just lurch from one crisis to another but I guess that's just life!

maz x