The all singing and nearly dancing Balder wheelchair

It arrived yesterday, in a fab metallic purple colour as chosen by herself. I can see why it costs 17K. Its fab, the way you can move different parts back and forth and up and down etc to get the posture/support you need at the time. B is getting used to its rear wheel drive (I don't know why but it reminds me of a dalek or something!) and rising up and down cos its a little daunting at first. We are going to gradually get her used to standing - her physiotherapist says she has to stand at least 30 minutes every day in it during the holidays!.

Here she is in semi-rise position

Appointments - we want them but we fear them

Long awaited appointment today for B with her neurologist. It's been postponed several times the last few months. B has been seeing this neurologist since she was 5. When her first MRI showed what looked like degeneration of her cerebellum. And she was with us on our journey to diagnosis, the years of testing and anxiety. And now she is like a friend you see once or twice a year for a catch up and coffee (without the coffee though).

Today's appointment was not revolutionary, just practical decisions to make a difference to Beth hopefully in a positive way.

Her headaches - you know my worry over these. They aren't getting any better and really impacting her. Dr C has decided to try on a different drug - Topiramate. This is used for epilepsy in higher doses but is effective for migraines in a lower dose. Also some evidence it helps with tremors and neuropathy pain in feet and hands. So we will give it a go.

Her feet - she has been experiencing burning sensation after swimming and pain, blisters on tops of her toes and now there is some swelling around her ankles. Apparently it is not oedema (or doesn't look like it) but Dr C says its definitely all to do with the advancing neuropathy. So now we need to look at daily elevation of her feet, support socks, and she will ask the lymphoedema nurses at St Georges for any management advice.

Other stuff - due to her frequent coughing during drinking, she will arrange for a swallow study to be done to see if she is aspirating into her lungs. And a bunch of other stuff including additional vitamins to be taken and seeing the community podiatrist for care of her feet during the holidays.

and the nice stuff? This afternoon, B and I are going to have our hair cut and blow dried together. Pure mother and daughter time. I love it.

ONE YEAR DOWN, TWO TO GO

Had my final 1st year nursing exam yesterday. I got 80% which is an A. woo hoo. and then we went to the pub which was even better.

Relief is immense. Time for me and B now, for a few weeks anyway

A walk in the woods

Sometimes we go for a walk in our local woods at Horsell Common. Whatever time of the year you are guaranteed to see lots of different breeds of dogs which is one of the reasons we go because Beth loves them (and secretly so do I!). This one decided to disobey his owners shout and come say hello

and there are guaranteed to always be some playing in the pond. These two having fun whilst their younger sibling, out of picture, looked for the ball.

and then on our travel's we noticed Eoyore's house

and how B laughed when pushed over the masses of pine cones.

A nice morning.

I so love my child

I love her when she is grumpy, I love her when she is sad or ill and it breaks my heart, I love her when she sings out of tune and when I come home from work and find a big poster of Troy from High School Musical on the outside of her bedroom door..I love her sense of humour because she knows how I feel about him (ugh!). I love that she needs me when she wakes up feeling ucky, and when she doesn't need me and tells me to go away. I love her when I paint her nails with black nail varnish (!) and decide we both would look good with the hot pink she had chosen for her toe-nails.
I love her giggles when I am trying to get her to bed although I wish she wouldn't cos it makes transferring really hard!
I love that she knows the word "diluted" all of a sudden.
I love that she still gets melon and lemon the wrong way round.
I love that she gets so visibly excited about spending time with people she loves.
I love her determination and strength.

I love her.

This is going to sound awful

but I don't care. Why is that whenever I feel like I am getting to some kind of even keel, something happens to blow it all away? Is it a punishment? Or just the beauty of life!?

Today I worked in the ward until 1pm and then had my practical exam at uni. It went ok I think, I don't know, will find out on the 4th August. I come home to B and her Carer advises that one of my cat's, Mimi, has been dopey all day and has black stuff around her mouth (she is white so black stuff is obvious!). I take one look at her and call the vet. To cut a long story short, she was sedated and examined and because she has a low immune system is susceptible to mouth ulcers. We know this so apparently she has two and the black stuff is blood. The issue is that there is another lump at the base of her tongue that is suspicious. It could be cancerous.

So she was sent home and has to go back in the morning. If the lump and the ulcers haven't responded to antibiotics she will have a biopsy under GA. If it is cancer, she cant have surgery because of where it is but will have to have chemo or radiography.

I love my cats. I feel like someone has let the plug out and punched me in the tummy (actually I have tummy pain, don't know why). My poor Mimi. She hates the vet and she hates me when I take her and she won't let me cuddle her. Now she is sitting dopey as anything with her head in food.

My white cat

Keeping everything crossed it is not cancer. Please.
and can there be an end to this benny hill day
Thanks

Mmm

Just reading this page, I have come to the conclusion I cry too much

Sorry!