Another update on Mason

[JackyH]

Originally Posted by Floridatilly

Well my husband has come home from work and said that he is not using a wheelchair !
I hoping when he sees the full report he will fully understand. I am not good at explaining things.

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I’m not really sure why your husband would say that? Surely it’s important to help Mason as he seems to be really struggling at the moment and I’m sure it’s very stressful for you all.
My grandson is disabled and a full time wheelchair user. It helps with his independence and I’m sure short term would help Mason. I hope things start to improve for him soon.

[Gull]

Oh such a lot to go through ❤️

On the positive, they are treating him and will have a plan in place. It’s disappointing your DH wasn’t a bit more supportive, but it’s probably been a shock.

You’ll be creating a special bond being with Mason all the time. Just try and do things he enjoys to make things less stressful. At least with a wheelchair you can go out to a park/beach etc.

The Dibb is always here when you need to let off steam.

[Colette-S]

So sorry to hear this FT, you must be exhausted with it all. Your holiday is a long way off yet so try not to worry about that for now. The introduction of a wheelchair must have been a shock for you and your husband but the medical team must think it will be a help for him and it sounds like he is really struggling with mobility. It may mean that you can get out and have a change of scenery every now and again which may do you all the world of good.

[dismamx2]

Poor Mason, he is really after getting a tough run of it lately (and you). I'm sure your head is spinning right now. It is good that Mason is getting the appointments and help that he needs. This is temporary, everything will find a balance soon. You have a great trip to look forward to. Thinking of you!

[Tillyfloss]

Speaking from a similar experience my advice is - take all the help you can get or is offered.
I think you said Mason was being treated at Alder Hey, they have excellent support systems in place. If he is likely to miss school long term they can help with homeschooling, tutoring etc.
Support for siblings used to be available and of course parents.
Hopefully things like that will be dropping back into place.
I hope you and your husband can rethink the wheelchair- try to see it as a ‘tool’ or ‘adaptation’ to get over a difficulty- in the same way a sling would be given for an arm injury or a cast for a broken limb.
The light at the end of the tunnel may seem a way off but it is there.

[Bootrip2]

Have sent yoh PM. X

[TheHughesCrew]

What an absolute rollercoaster of emotions 💞😘 xx

Your poor beautiful boy xx

As has already been said, take all the help that you can. Nothing is set in stone, and nothing needs to be forever. Whatever helps you as a family right now, take it on board.

Hang in in there. Much love xxx

[Snowball24]

I'm so sorry you are having to cope with all this xxx

[Floridatilly]

My husband has got over the shock now and agrees Mason needs to get out and about. Being stuck in apart from hospital appointments is not good for him.
Thank you all so much for all your lovely messages 💗💗💗

[vowels]

Originally Posted by Floridatilly

Well my husband has come home from work and said that he is not using a wheelchair !
I hoping when he sees the full report he will fully understand. I am not good at explaining things.

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This will be short and brutal, not to cruel but because I have Rheumatoid Arthritis and I am suffering from a flare up and do not wish for Mason to be suffering the same pain and discomfort.

Follow the physiotherapist's recommendations whether it is exercises, hand/foot splints or a wheelchair. They will reduce Mason's pain and prevent longterm damage to his joints.

Get an urgent referral to an Occupational Therapist who will give advice and a variety of items which will help protect Mason's joints whilst doing every day tasks. OTs are brilliant for people with arthritis.

Arthritis is not the devastating disease it once was, but it can be if not managed properly. My joints are damaged because my GP did not manage my disease when I was diagnosed at 19.

Mason has an early diagnosis and to reduce his pain and prevent longterm damage to his body, aggressive proactive management is needed.

Sometimes people want to wait until they have fully absorbed the news before making a decision on treatment, this is not an option with arthritis when the disease is active.

My pain from my arthritis feels as if my arm has been twisted, then pulled up my back. I do not say this to upset, but to illustrate the pain caused by a flare up and to highlight why you must accept all recommendations and help to manage Mason's arthritis.

I hope this flare up ends soon for Mason. I have read all your posts and know your lad is extremely brave, and know where he gets thst spirit from. You are all in my prayers. ×