Saturday, 26 June 2010

Brainwave brainache



Apologies for the lack of updates. It's been busy. I'll try and fill in the gaps sometime.

Well, we are all In the car on our way home. Considering this trip to brainwave has been something I've been looking foreward to for months... I couldn't have got out of there fast enough.

I've heard very good things about the place. But only the good things. I know one of my friends swears by it, and gives a lot of credit to the program for the progress her son's made. BUT what I didn't realise, was how hard it was gonna be! Actually, I do think Claire said it was 'physically and emotionally
Draining', but I think that may have been a slight understatement.

I'll try and put you in the picture; Hope has been stretched and pulled beyond her comfort, she's been made to stand when she can't even hold her own head properly yet. She's cried, screamed and pleaded with me for them to stop. Her big blue eyes haven't shed so many tears. She tasted of tears when I kissed her.

We finished each day with a session in the hydrotherapy pool, which made Hope happy again. The therapists were amazed by Hope's confidence in the water, how she really loves the water, and my ability to support Hope in the water by just using one hand under her neck. They asked if they could record this for their staff training.


Day 1 was spent assessing Hope, and by the end of the day, they'd designed her program. Day 2 was spent going over the program, me trying it, and then recording it.
So we now have our programs; one for the water, and one for home. They are both on laminated sheets and DVD. The home one needs to be done 6 times a week, it should take around half hour, but initially could take an hour.aNd until Hope and I are a more used to it, the whole program requires 2 people to carry it out, We've been provided with a peanut ball and a wedge. I'll try and put the DVD on YouTube very soon.



You can't fault the service there; everyone was really kind and helpful. The accomodation was so nice, it seemed a shame we weren't staying longer. Hope had 3 therapists all to herself for 2 whole days. This meant that the time there completely evolved around Hope. We were able to break for as long as we wanted, whenever Hope needed a rest, a cuddle or a feed.

So now we've just gotta crack on with the program, and wait to see I suppose. Hopefully it'll be worth the cost and the tears. Hopefully I'll be singing it's praises too.

if you are interested have a look at their site http://www.brainwave.org.uk/

Oh my honkey...

Omg- my honkey!

Can't quite believe I'm stood outside the oasis ready for the NCT sale, and Honkey isn't here. She's popped off with Daddy and Dolly to quickly pick Max up from football. This is the first time we have seperated. But it's cold. It made sense for her to be in the warm car. It happened so fast. She'll be back soon.

I've been preparing myself for this day for ages. Seems crazy I know, but in the beginning you don't leave tiny babies, then the seizures started, and through fear I wouldn't even leave her in a room, then I guess it became habit, then perhaps obsessive lol.

A few weeks ago, I took a step in the right direction, by leaving Hope with S (from rainbow trust) whilst I took Jordan and Max swimming. But, S was still at swimming, just watching, so I could see Honkey and check she was ok.

.........….……..............................................................

They came back a few minutes later, and I was relieved, and pledged not to do that again in a hurry. But actually, i think I need to. Chris won a meal out for us both at an Italian restaurant, so I think I can be tempted.

Update: we did go out for the Italian. S looked afer Hope and dolly and Moo. Sadly Nobody in the family knows Hope well enough for me to be able to trust them with her care. But I know Shes in good hands with S, plus dolly and moo like having S look after them.