HemiHelp: Nat's Blog - HemiHelp

Well, as the title suggests we are chilling out in sunny Florida. It's great to have time with eleanor and my husband mark. Just having time to enjoy being together has been fantastic. sometimes i feel like i 'hide behind work' to avoid having to cope with all the stuff that needs doing at home, but then i feel as though i don't...

Well with a week and a half left till my husband runs the marathon. the fund raising is at full tilt. He can't wait - though he is threatening that it may be his first and last marathon - he's not a natural runner!
So how's eleanor doing. She's doing ok. however she is still struggling with fits. She is having 6-7 infantile...

i haven't blogged for a while, so with the advent of another milestone I figure now is the time to add a little update.
Eleanor has started bottom shuffling - at the age of 17 months we have finally got movement! Admittedly at the moment it's limited to a 360 turn, but it's such a breakthrough. She is also becoming increasingly...

Ellie got a standing frame last week - a jenx monkey one. I was dreading it - my little girl doesn't need a standing frame that takes up half the living room! Now i've got to eat my words - the little blighter loves it :D and it's so nice to see her standing and playing. The only problem we have is that the little minx is at the...

sorry just had to paraphrase the film title as it's recording on our satelite atm.
But it is incredibly apt. My husband ( Mark) found out he'd gained one of Hemi help's bonded places for next years London Marathon.
It was really opportune. After a tough year we'd been discussing things we'd like to achieve in the next few...

i just wanted to record where we're are up to really. Eleanor is still having spasms ( we think). The spasms are so fleeting and innoculous that half the time we think we are being paranoid and looking for trouble where there isn't any. But we think they are still there and mostly present as the poor little mite getting upset for no...

:( Just an update. Eleanor and I have had a lovely day at home - a bit of a 'duvet day' and she's been a star - her usual happy self, but for frequent head shaking and the odd 'flick of her eyes'. We finally got a phone call from the hospital about 5 o'clock, to say that the hypsarrythmia is back - not as prominent as the...

I picked eleanor up from grandma's on friday. I thought she'd had a 'spasm'. i thought i must be wrong and just being paranoid. Mark thought she'd had a spasm on saturday and so it's been. She's sleepier than usual, irritable and the spasms are becoming undeniable. We had an EEG today, and tomorrow we have to wait...

Global developmental delay... politically correct.
We went to see the audilologist the other day. When he asked if we had noticed any problems with eleanor's hearing, I gave an example of her not being as alert or curious as other children her age, not responding or looking at us say if we come into a room, not really responding to sounds on...

A few weeks ago I bought 'congenital hemiplegia' the only book i've managed to find on the subject. I only skimmed read it at the time, but I've just got it off the shelf to have a better read of it.

The book itself i wouldn't necessarilly recommend, being medical myself I can understand it's aims, but I haven't...