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DAY 2 OF WEEK OFF WORK

DAY 1 Comprized of ironing. Making dinner .Washing.

Some much Needed work on blog.

Slow and easy plenty of breaks.

Hubby and daughter helped too.

SO AGENDER FOR TODAY

More ironing not much left now but still some more.

Dropping daughter off to her friends.

Hubby has his flu shot today. He already had the shingles shot.

Hayley.  Niki and me have our flu shots on the 11th wr all got them within a 2 hour window on the same day at same place that makes it easy supporting them. Rather than lots appointme.ts on different days.

I got to get a food shop in.

Work on files to upload to court of appeal. Yes this is about thw 5th time we been to appeal stages in the last 10 years. I am hoping this one is successful like the others.

But given the new policies being drawn up I am not so sure on this one.

Maybe I will be pkeasantly surprized and get a judge as nice and as understanding of disabilites as the last one.

I think it maybe a few more months before a court date is set.

I wish I could sit down with the politiacians in charge and really habe an depth conversation about policies that caise more harm then good . Barriers to Health Assessabilty . Education.

There is a hell of alot of gaslighting that goes on in dealing with all the out agencies amd lack of proper legal support and practicle support for Send families. Long waiting times We cannot undo the damaged caused.

Since childhood I have seen some really good practices but also alot of harmful ones too.

Carers also do alot of research into past court cases so they can reference

Cases that have priviously won at appeal.

Then there is the actual caring we know our person better than anyone. We know their needs thier wants thier

Abikities and disabilities we handle the side affects of medicine. Their symptoms before during and after diagnosis. We work hars on thier health well bieng and mental health.

Because reality is that side of support fulls short from the long waiting lists.

Messaging and phone calls with my sons.

BEHIND THE SCENES

Even though I am on annual leave there is still phone calls to make for Hayley.

Last week we had her social worker visit looking at her care plan updating her needs. Doing her finatial review for her contribution to jer car plan.

I would say waiting for it to happen is very stressful. I been asking for a long time for this visit.

Now we wait to see if there are any cuts any added expenses for now untill this report is done she is paying then Maximum amount towards her care. There may be small changes as we just did her migration to UC.

That kind of went smoothly so far and we keep it by-weekly rather than monthly like the legacy benifits she was on.

Hayley also has a hospital appointment for a biopsy in her mouth when she back from holiday.

Whilst I always explain everything to her I don’t know how much she truly understands what they looking to rule out.

We also have to watch her closely after the biopsy so she doesn’t pick at any stitches. Then wait for results diagnosis and if there is a treatment plan going forward.

Then starts the plans for updating everyone that provides care for her.

Or who writes her care plan.

Hayley is active in her health care with my support.

She helps plan and choose her menu’s activities. We use visual aids pictures or colour codes as she is better at remwebering things this way.

So for example managing her weight is an integral part of her care due to her prader willi syndrome.

We have a tecnique we found helps her visualise it and reconize when she needs to be careful with what she eats.

Her weight is checked weekly.

If we write it in blue she srayed the same weight. Black she lost weight and red she put weight on.

Weight management also helps to keep her sieszures low. As in yhe big seizures. She still has focal seizures though.

She is on alot more medication. To help us manage her health. Seisure meds .blood pressure. Cholestrol and blood thinners.

Her asthma is stable at the moment. So she is not needing the reliever as much Just preventor.

Hopefully the vita min d and calcium tabs and androlic acid. Will help with her osteoperosis.

Her lastest stroke assessment follow up theu told me to watch out for her forgetting things more if i notice she is to write ir down and keep a diary so they cam do a memory test.

Noy sure how they will perform that given her learning disabilites . Time will tell.

Hayley herself shares these things in our video’s because she likes to have an opinion and share her life.

She actually gives everyone sje talks with a running comentry on her life.

Thats Part of her openess and personality.

I GUESS THIS BLOG TURNED INTO A

Trouble shooting blog. I see the issues in the system and want to see really empoweringmoves in right direction a colaberations not just wuth others making decions for us but an enclusive tuen whixh puts the people and their carers at the forfront in these changes.

Any way much love faye