Wheelchair technician appointment (plus update)

[Floridatilly]

We have just received an appointment to see a wheelchair technician on the 24th May.
Does anyone know what to expect? Is this just measuring him? Or actually giving him one? They took his height and weight over the phone.
Thanks x

Update on Mason. He still isn’t great at the moment but the IBD team rang after having a meeting with Mason’s Crohn’s consultant. They don’t expect to see an improvement from the infliximab infusions until after his third one which will be on the 21st May. His bloods & stools last week week show low white blood cells, low red blood cells and low total protein. His faecal calprotectin is still very high. But all this is as expected.
If there is improvement after the third infusion he can slowly return to school after May half term 🙌🥳🙌
They recommend starting with an hour or so three times a week to start then slowly build but. But thats certainly a move in the right direction 🤩🥳🤩
He is getting really down so seeing other children is definitely what he needs!

[EssexSue]

Originally Posted by Floridatilly

We have just received an appointment to see a wheelchair technician on the 24th May.
Does anyone know what to expect? Is this just measuring him? Or actually giving him one? They took his height and weight over the phone.
Thanks x

Update on Mason. He still isn’t great at the moment but the IBD team rang after having a meeting with Mason’s Crohn’s consultant. They don’t expect to see an improvement from the infliximab infusions until after his third one which will be on the 21st May. His bloods & stools last week week show low white blood cells, low red blood cells and low total protein. His faecal calprotectin is still very high. But all this is as expected.
If there is improvement after the third infusion he can slowly return to school after May half term 🙌🥳🙌
They recommend starting with an hour or so three times a week to start then slowly build but. But thats certainly a move in the right direction 🤩🥳🤩
He is getting really down so seeing other children is definitely what he needs!

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I'm going back a bit but I think when my granddaughter had her wheelchair they brought it and kind of altered it to fit her. I'm going back a bit and that time is a bit of a blur to be honest.

[marypoppins38]

I think they just alter it so it fits him right and he is comfy in it. I have got everything crossed that he starts to improve after his next one FT. I think a few hours back at school would probably do you both the world of good. I bet all his friends would be thrilled to see him x

[Gryff]

Hope he gets back to school
They may make sure the chair fits him and any modifications made and then deliver it
Make sure he gets a good cushion and it will fit in the car sometime that’s forgotten

[WIGGYSMUM]

My BIL is quadriplegic so wheelchair reliant.
My experience is the company we use have his measurements/weight gets then build the chair to accommodate him.
This could be that they want these details but they may offer a chair on an interim basis if they haven’t one suitable for Mason
I would phone to check with them just so you can give Mason a heads up so he can process what the visit will entail.
It can be mentally challenging for a child , my BIL had major buggies until he reached around 11 he found the wheelchair very challenging of his personality, even now at 41 he still has to have the same blue wheels, cushion etc

[Floridatilly]

So there is a chance he could actually be given one on the day 🤞🏻 Hopefully he won’t need it for long if the infusions start to work but it will definitely be good to get out of the house, we are both going a bit crazy.
Mason’s moods are so irrational, we heard shouting last night so went running upstairs to find find Mason screaming and attacking his older brother, literally ripping his hair out. Luckily his brilliant is calm and doesn’t retaliate.
It sounds absolutely awful but I can’t wait for him to go to school 🙈 I think I will be doing cartwheels of freedom when I finally drop him off 🥳

[BarryandCaron]

It depends if there is a wheelchair in stock where you take Mason. DS2 uses a wheelchair and he had to wait a few months to get a new one. This was reliant on NHS funding so took a while. He did already have one though. Fingers crossed they have a chair suitable at the assessment.

[Floridatilly]

Part of me feels a bit guilty taking such an expensive item from the NHS. I do hope this doesn’t take one or push one back from someone who needs one permanently.
I assume the one Mason is given is just on hire. He is back at the rheumatologist in two months to re assess his mobility, how long he can/should walk without causing joint damage.

[Colette-S]

Originally Posted by Floridatilly

Part of me feels a bit guilty taking such an expensive item from the NHS. I do hope this doesn’t take one or push one back from someone who needs one permanently.
I assume the one Mason is given is just on hire. He is back at the rheumatologist in two months to re assess his mobility, how long he can/should walk without causing joint damage.

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They wouldn’t recommend it if he didn’t need it FT. Take all the help you are offered. Use it and get yourselves out x

[WIGGYSMUM]

FT make sure to get yourself a Radar key for assistance loos , not all are left open , it could be just you & Mason out and we benefit you once he has his wheels !