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special needs brooklyn

(11 Posts)
carrrie Tue 25-Aug-09 11:17:12

Hi all,
my name is Carrie I am mum to 2 girls aged 10 and 11 and little Brooklyn who is 23 months old and has mixed CP. We are going for our first wheelchair servises assesment next month as we have made our way through 3 pushchairs already and the cost is mounting up.
We first had the Mamas and papas pliko p3 but his frame was too small we also bough a mothercare mix and match stroller for ease of use and travel (we didnt know about the CP at the time), then finally our last chair was a loola, very snug but not enough trunk support so it started to become very painful for Brooklyn.
We are currently using the Otto Bock which has been given to us on loan until our assesment, an excellent chair but quite heavy.
We have had up and down days emotionally as Brooklyn was born at 24 weeks and only given 20% chance of survival.
We love him so much and he brings us so much joy, but everyday my heart aches as i was him fight just to be here. He cannot sit unaided and cannot and will not ever be able to walk. Although his legs move its his trunk that is too weak.
He is stiff and then floopy so treatment would contradict eachother.
Anyways, thats our story so far.
All the best to all Mums xx

beldaran Tue 25-Aug-09 12:35:45

Hi Carrie,

Welcome to SN. My DD also has Cerebral Palsy and we go for her wheelchair assessment tomorrow morning. Fingers crossed we get the one we want!

Can i ask...have you posted on MoneySavingExpert at all? Its just the circumstances and the name of your DS sounds familiar. If it helps i go by the name "cresentmoon" over there.

carrrie Tue 25-Aug-09 12:53:35

Hiya, yes i think i may have done a while ago, but havent looked at the site in a long time.
Will you let me know how your assesment goes please. x

carrrie Tue 25-Aug-09 13:03:35

I just wanted to let other mums know of a company called CEREBRA they offer a free toy library service, they deliver via parcel force free and collect a month later free.

Its a really useful service.

beldaran Tue 25-Aug-09 13:13:40

Well i can sort of tell you how it will go lol.

This is our re-assessment appointment to try DD in a pushchair they have ordered in.

The first time we were assessed they tried to get us to have an Ormesa NewBug pushchair, which would not fit in our car and was far to heavy for us. So we went away, did some research and went back to them and said we wanted to try her in a Alvema Ito which they have kindly ordered in for us. We shall see what happens.

TheDMshouldbeRivened Tue 25-Aug-09 17:14:39

Hi Carrie. My 5 yo has severe quad CP. She uses an R82 Panther wheelchair as she has complex seating needs - unable to sit unaided.

brooklynsmum Wed 26-Aug-09 20:13:24

I'm really worried that we will get something totally unsuitable. I have such a bad back and really need something that i can lift and folds easily.

Do you know anything about the voucher system?

Carrie x

brooklynsmum Wed 26-Aug-09 20:18:33

Im not sure on the panther wheelchair but it sounds like something we will end up with eventually.
Has anyone heard of the Jazz EASyS pushchair it looks to have good support or the snappi i think its called or it may be called the swifty sorry i get a bit confused with all these names. Its through tendacare made by thomashilfen.
Id be interested to hear if anyone has tried this one out as im thinking of running the idea by wheelchair services if we are offered something too heavy.
Im finding the Otto Bock a real handful at the moment!
Im at my mums in devon at the moment and trying to get on thebeach is just a joke the buggy sinks its so heavy and you just cant move.

Mitchell81 Thu 27-Aug-09 06:45:49

We have the otto bock kimba spring, tried the jazz easy as it is very similar. (so don't know if you will find much difference)

For the beach we use a 3 wheeler as no buggy/prams/wheelchairs go on easily. Even the maclaren major which is the lightest pushchair sinks into the sand.

brooklynsmum Thu 27-Aug-09 23:06:57

Hi thanks for your reply.
Does the Jazz Easy come in 2 bits then also? ie, chair and frame?

I just dont know how long i will have before my spine truely gives in. I think that WS will offer the maclaren Elite i think its called.

I have been searching the internet for weeks now trying to look up different pushchairs available but its so difficult.

I was hoping for an umbrella folding chair for ease but still wanted it to be comfortable for Brooklyn and also supportive. The maclaren doesnt appear to have any padding to it at all just a ridgid stroller.

Its also top priority that a play tray attaches as Brooklyn likes to bang his head and the tray allows him to keep his bits on it while we are out and distracts him to a certain degree.

Any websites or reccs would be highly appreciated.

Carrie x

Mitchell81 Tue 01-Sep-09 06:56:48

Yes I think the jazz easy is the same ( in two parts). Hopefully someone will have some better suggestions for you.

www.adaptivemall.com/ is a good website to see lots of different options.

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