Hi all hope your day has been good.

Still no book news from liquidators 😞

I just want to really get on with it now, it has now been a few weeks since we had the meeting with them in which they promised to send a copy of the minutes of the meeting, and sort out the digital copy , an InDesign copy. Not to mention no feed back about the money we put a creditors claim in for, I haven’t even revieved the royalty payments for the books that have sold yet.

What the book has brought to my work!!

It has brought laughter, trying new things helping those I work with talk about thier feelings, a willingness to engadge with thier learning, and a want to learn more.

It has encouraged them to think about health and fitness. To smile so much more.

That is just those I work with.

My Family

my family have got so much more out of it, the wider family talk more about what has affected them, Huntington’s is no longer a taboo subject, like autism, anxiety, and mental health.

I mean I have been very vocal about all these topics for sometime now and if we didn’t have these things in our life the book may never of happened.

I like to think of my book as the most positive thing to come into our lives at our most difficult times.

That has set us on a more vibrant and positive journey, more able to cope with any more health issues we have to deal with along the way.

Working with Hayley

I have seen so much change in Hayley more so in the last couple of months.

I have definatley noticed a change for the best in her memory lately maybe now she is not so sad about the losses of friends and family it is easier for her, or maybe she see’s my Niki and Jake doing well with Thier learning she wants to try hard like they do she definatley looks up to them, and always wants to no how they are doing at school .

Hayley new a few numbers but was not able to say them in sequence so we have been learning her numbers with little jigsaws. A couple of weeks ago she could count up to 5, yesterday it was 10 and today it was 15.

Every time I got her to show the kids what she learnt she surprised me with a little more. By the end of the day up to 18 without any prompts.

The alphabet I think may take a lot of time but I won’t give up trying to teach her it, we have started reading to her just some of the books I used to read with Niki and Jake when they were little she joined in with me her pig and duck noises were brilliant.

Niki’s Feelings today

She is still processing the doctors information from yesterday, but was at star at having her blood tests done today, she has come so far in getting over her needle phobia now the anxiety is still there but she just gets on with it. We are taking it day by day. It is on her mind but she is focused on her school work and plans for her education and future. She has developed some lovely lasting friendships over the last 2 years, and has her third year anniversary of when her and Tom got together coming up. If I would of listened to all the advise I have been given over the last five years about her I would have been wrong.

Jake’s day at school

He spoke to and sorted out the issue with the boy from the other day, i am still going to keep a close eye on the situation to make sure it does get worse but I am truly happy to be led by what he wants and backing off so he learns more resilience to these things.

he is still earning lots of positive points at school, mainly for achievement and respect and perseverance, I am not surprised as this is my son and he always knows these are important things.

Homework again he has been working hard, we are learning that some times it is not the work he struggles with but the way in which it asks questions before he wouldn’t let us help him. But now we read it to him just a sightly different way and them he gets it much easier.

Hayley’s blood test results

Well the call from the doctors we have been waiting for all week came through and her liver function test have come back high again as it has for her last couple of tests, so she needs to have them taken again in the middle of February and if they come back high on the next test they will be looking at performing a scan. It could be to do with the medicines she is on for her epilepsy,

She still has her yearly check for her learning with the nurse on Friday plus her yearly review coming up at the day centre.

AS you can see there are many things being a carer for work and being a mother and carer for my kids, to do no 2 days are the same this is our life we are just all better at it now.

My hubby Nik

I am so thankful he is around and it was good to talk over whats happening with Niki’s health with him, because we do each have an opinion on these things he makes me look at things from different perspective, he points out things i may not think of and i point out things he may not know.

Oh and he scraped the ice off my car this morning, made the kids smile.

He also cooked dinner for us all as I was working with hayley and sorting the children. I am lucky to have him as a husband sure sometimes i could quite easily become frustrated with him, but then he does things that remind me why I truly love him so very much. we both like to prove we are right both stubborn have the same kind of sense of humour, each of us knows the other I think better than we know ourselves and both of us dont like to admit that. I think we challenge each other, I wouldn’t of liked to be with someone who agreed with everything I say and I love that he stands his ground with me I can be some what temperamental sometimes.

That is pretty much our day today, so good was some learning still to do on the medical front but as always, we are a family of get up and give it a go, never give up hope type of people.

much love

Faye xxx