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)
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 : email@example.com
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
To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope? We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy. Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love! Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.