It's been.... Emotional!!! ( the half marathon 10.10.2010 )

It was... Emotional!

I can't believe it's all over. All the training, and nerves. I can honestly say; i thoroughly enjoyed the run.


The morning got off to a memorable start, when my water bottle leaked over me in the car, leaving me looking exactly Like I'd wet myself! I had to put this bit in, cause if I didn't Mary , who found the incident highly amusing and probably nearly her highlight of the day, would have no doubt commented at the bottom of this Blog 'you forgot to write about your accident' lol.
In hindsight, the mission to find a dryer, at which I stood in my knickers, kept our minds occupied, and probably stopped us going insane with pre-race jitters.

I had my ipod loaded with my favourite tunes. At just past the halfway mark, Hope's song came on. 'you're amazing.. Just the way you are' I blinked back the tears as best as I could, as I reminded myself why I was doing this.

Seeing my lil family waiting at the end was great. Jordan and max joined me in running the last few hundred metres . Though I nearly tripped over as Max kept cutting me up , complaining at how slow I was running , and asking could I not go any faster. The fact that I'd just ran 13 miles, the last 1.5 of which were all uphill, completely insignificant to him! Lol


The fundraising has been great too. Auntie Mary raised bomb, and to my amazement the kids friend's dad- Steve, from the school, text out of the blue a few weeks before the race, and said he was running it anyway, and could he do it for Hope's wheels fund. In all, we've raised more than £1,000 (could be considerably more, but not counting my chickens till they've hatched). I've been moved by the generosity of friends. Some whom we've never met in person, but whom I'm online friends with, either through SANDS, open uni, or having a special needs child. I received some beautiful cards and letters through the post with cheques, along with a beautiful story book for hope from a fellow angel mummy. I'll keep all these forever!

At the end of the race, I was chatting with Hope's visual impairment teacher who came in just before me, and a lady approached me, and said 'i saw your pledge on your t-shirt (photo above. We had to write why we were running) and wanted to give you something towards your cause'. Well, that did it for me and Hope's teacher. Both of us were choked and teary eyed.

Mary and I had a sweaty hug as we congratulated ourselves on how far we've come. I don't think we ever imagined we'd ever actually get as far as the half marathon. We joined the half marathon training program when we were running about a mile or 2. Each week the distance grew, and we kept amazing ourselves , but we just kept saying 'we'll keep trying'. Expecting that at some point , we'd hit a wall, and not be able to do it anymore.

I know I'd never have considered it without Mary! Infact , who's crazy idea was it? What made us think 'let's do a half marathon' and not a 5k or 10k? Lol

I know I'd never have achieved it without the support from shin splints- thank you so much to all the mentors there!

But more than all that, there was one very special lil
Lady that kept me going. Each difficult step I took, I took it knowing that I CAN, and I am lucky that I can. But Hope can't. So the least I can do, is to keep stepping, so that she can have the wheels she deserves!

Love you so much my honkey. Mummy will get you the best baby wheelchair there is. You will ride in style and luxury!
Thank you for being you!!!

Xxx

The shuttle . Part 2

Today we had a rep come to the house with the shuttle system. A try before you buy ... Which is a must when u r spending that kind of money.

I fell in love with it even more when I saw it. It's most definitely more pushchair looking than wheelchair, it's compact, light... Hope looked very well supported and comfortable and very grown up in it. The seat unit can be turned around easily so she could face outwards or more importantly, towards me. The rocker base was fabulous! I can imagine Hope sitting there relaxing and demanding to be rocked. An extra bonus, something I didn't realise before, is that the seat unit can be used alone and therefore would be useful when out visiting.
Perfect??? NO!!!!
The hood and raincovers don't fit on in the parent facing mode. The main reason we don't/ can't use the snappi!!!
Arghhhh

Anyway, all is not completely lost. The rep said he didn't think it would be too difficult to adapt the hood and raincovers so they would fit. So he is going to speak to someone in the workshop to see if it can be done, and then if they Can get it past all the safety tests etc with it adapted. So now it's a waiting game. With the possible hood adaption, it would be perfect. Without... It's not.

In the meantime, I've arranged another rep to come out from another company with a different set of wheels. The rep today actually suggested this, and another mum passed me on a brochure.
The stingray ...

WHEELS

This is the 'Tom stroller' we were offered. EW- NO THANKS!!!

This is the far more attractive and appealling 'snappi', that was the alternative. Not bad, except; it doesn't have a parent facing option, which when you consider the amount of time Hope spends on her way to and from appointments and therapies, but more importantly; the fact Hope is an epileptic and I NEED to be able to see her.

To cut a VERY long story about a meeting with wheelchair services and with support from Hope's lead professional, a  happy compromise was found (or so we thought at the time)...........

Here is Hope  on her way home from hydrotherapy in her ADAPTED
 snappi (now parent facing). HOWEVER, this picture is the one and only time Hope has used it!

This is why it's no good!!!
1- It doesn't have a basket-though on this count we are lucky to not have
a basket, as you only get a basket if you have an oxygen unit or suction equipment.

2- Now it is rearward facing, the raincover doesn't fit! and there are none that do. Which in the UK is never gonna work!
3- No hood to protect her from the wind and sun (if there ever is any :O)  )
4- BOLT CITY!!! This pushchair was manufactured to be forward facing, therefore, the back of it, which is now the first thing you see (but normally hidden), is metal and big bolts - EW

I've been in touch with wheelchair services and tendercare about these issues, each seem to think it's the others problem- none offering any solutions, so when I get the opportunity, it will be returned to wheelchair services- it might well suit another child .

So here is my solution...I've searched high and low, though to be fair, there isn't a massive market, and they are all ASTRONOMICAL in price, but this, meets Hope's and my needs.....

THE SHUTTLE SYSTEM

The Moon buggy

Not only is it quite nice looking,(as far as these things go),it can be forward or parent facing, it has a hood, raincover and basket, it's lighter, suitable til age 6 ( though i suspect it'll last longer since she's on the smaller side).

Plus with alternative bases options available, it also fills Hope's needs for a comforable chair for her to relax in...
The moon rock (excuse the sideways pic)

THE DOWNSIDE.........................
£2,775!!!!!!!

Hence the half marathon, which is probably going to be the first of a few fundraisers. But, she deserves the best, and it'll be worth the hard work!

So any donations/sponsors, big or small, will be very gratefully recieved.
Donations can be made through paypal.co.uk  account : runningforhope@yahoo.co.uk

Thank you very much

Xxx

runningforhope

In May, myself and Hope's godmother Mary, joined a running club (Swindon Harriers), at this time, we were in the beginners groups, ands started out jogging for one minute, then walking for one, jogging for one and so on. We progressed fairly quickly in the next couple of weeks , then set our sights high. In hindsight, very high. It was when we could run about 2 miles without stopping, that we decided to join another running group (Shin splints), in preparation for the half marathon. We said that's what we'd aim for, but at the time it seemed a very very long way off. Well, 2 months or so have passed, and we are now running distances that we've never even walked. Im upto 10 miles and Mary 12 (I missed last week as Chris was working). Apparently, according to more seasoned runners that ourselves; if you can run 10 miles, you can run 13.1.

So, we've done it! And of course, it's always been in  our minds that we'd do it for a good cause. Well, charity begins at home. Right? Hope inspires me daily, and on those long runs, when one could so easily give in and walk, it's her smiley face that spurs me on. I do all that I can to make her life, the best it can be. She's happy, so I guess I'm doing something right. However, I feel like, there are things that would make her life even more comfortable, for instance, a chair to sit in- not much to ask right, but when you reach a certain size, baby bouncer chairs are no good, and when you don't have much control over your muscles, you can't just sit on the sofa. So you are held all the time, or you lay on the floor- which you enjoy, but , it would be  nice to have a suitable chair.
Then there's the wheels... She's getting to the size and age where she fills her pushchair. We have been supplied with a 'special' pushchair, but this is unused in our cupboard under the stairs as it does not meet her needs (this is another story, but I'll fill you in another time). Unfortunately, with disabled equipment, there isn't a huge market to choose from, and basically, anything that's been made for disabled people, is ridiculously priced. You could quite literally, take the price of a normal item, than add a couple of zeros to convert it.

Then there's the thepary. The brainwave therapy seems to be paying off well. We paid just under £700 for the initial assessment and therapy, and are due back for reassesment next month. Thanks to family and friends doing some carbooting, we have the next visit funded. Ideally though, we'll go 4 times a year.
And I suppose, there are other therapies that I'd like to try if money were not an issue.

So here begins my fundraising. The half marathon, is on the 10th October. Please sponsor myself or Mary through paypal address runningforhope.yahoo.co.uk
Any amount will be very gratefully recieved

Thank you

Xxx

HAPPY DAY :o)

For one reason or another, a few months have passed since we last saw Hope's lovely consultant Ravi. She's meant to be a 6 weeker to this particular clinic .




If you've read other posts, you'll know this doctor is a very significant person in our lives; he's such a kind doctor, but has given us bad news more times than he or I care for. In some of our bleaker times, he'd call to see how Hope was. He's also given me too much food for thought, and my head and heart wrestle continuously with the whole biopsies - to test or not to test battle. His thinking was along the lines of forewarned is forearmed (possibly, but the findings may not be conclusive still). My train of thought being I couldn't bare to know. Ignorance is bliss. I often lay at night with her wondering how long ...



Hope was on top form today, and Ravi could see she'd grown. He was pleased with how well she was supporting her head now, and she showed off with her babbling. I told her that she's a lil roller now, and he asked if she might show him, and she was pleased to have the opportunity to perform one of her favourite pastimes.



After this, Ravi picked her up and fussed and kissed her as he usually does, and told me how great she's doing.



As usual, I presented him With a host of questions ; my first about checking lactate levels, kidney function etc (these are done routinely for Hope). He said he wouldn't bother this time as it's clear to see how well she is :9)



We discussed her vigabatrin doses and her fleeting seizures. I questioned whether her recent thrush is an indicator of an imbalance , but he thinks not. I asked to be prescribed a rescue remedy med to treat her epilepsy in an emergency, he agreed this was a sensible thing to do now. But since pharmacies won't hand this out, and I need a lesson in it, we'll have another appointment soon to go over this.





He's also prescribed a laxative for her chronic constipation, but after finding out more about 'lactalose', I think it may not be ideal since it works in a way which draws fluid from the body, and requires a good intake of fluids, however, I already have issues keeping her hydrated. We'll see how it goes.





For a change, I bought up the biopsies... I suppose I know eventually
I'll have to agree... Maybe it was time to start the ball rolling... Much to my amazement, he said he really doesn't think there's a need right now. Obviously we know there's something majorly wrong, but things don't seem to be going downhill at the moment. And Ravi spoke of new techniques and tests that are being developed and researched all the time, and that the knowledge is growing rapidly, so in time, conclusions may be reached on the blood and csf in labs.





He said he'd see her in 3 months.



I could have skipped out of there :0D

xxx

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.