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!

End of Term

Mixed emotions. End of an era for B. In September, she is moving boarding house, class and therapists, first time in 3 years. Today was end of year prizegiving, I didn't know if she was receiving anything or not. Well she did. She got this:





and this:

and a HSM watch (we really can't get away from that...ok, I can't) and a woollies voucher.

She cried alot when it finished. She is going to find the transition hard I think. She cried, I cried and then one of the other little girls cried. So toilet roll all round. She will be fine, she will be fine, she will be fine!

7 weeks off now for B. Mmmmm

So near!

Ok, surprisingly I did better than I thought in my mock. I only failed one piece and that was for not writing RPM after my respiratory rate I counted - a minor thing. Apart from that I PASSED EVERYTHING!!

Here's hoping thursday it goes as well......the actual exam.

Finished my assignment today, finally, just need to tidy up the references and get Martijn to make sure it reads ok. And am busy trying to revise the nervous system and ears etc for my written exam next tuesday.

I can't wait til tuesday 10am. END OF TERM! END OF FIRST YEAR! TIME OFF! YEAH!

How not to start a practical exam

Ok, all day waiting for my formative OCSE at University - which basically is a mock practical. 3 stations - 5 minutes each, one for Temperature, Pulse and Respirations, one for fitting a hoist sling and one for doing recovery position. Ok it may sound easy but let me tell you IT ISN'T! You have to meet six criteria for each and there is alot of communication needed and remembering what to do. And the people you do it on are members of the public and there is an examiner in each cubicle.

So by 14.35 when mine was, I was feeling quite shaky with nerves. Standing outside the first cubicle, one of the lecturers saw my face and said you will be fine Robyn to which I burst into tears! DO NOT SPEAK TO ME PLEASE! The whistle blew and I had to start.

BUT.....

my crying had dislodged one of my contact lenses. So I then had to fit a hoist sling to Joe* whilst only being able to see out of one eye and vision blurred on the other. Great.

By the end of that five minutes, miraculously I managed to remember everything and even able to adjust my eyes to squidge that lens back into place when I sat down. Joe* whilst out of character said he got married with one contact lens so what I went through was easy. Thanks.

So after the other two stations which I think I did ok, it was over. PHEW

Feedback tomorrow and then actual exam on Thursday...If I don't pass I get three other tries. But in my holidays AND I WANT A BREAK!

fingies crossed.

This type of stress surely isn't good for you as you get older. Is it?

*Aka Joe Bloggs

A week

Happy birthday to me for last Tuesday..3 years til 40..nice thought. Its funny how even though your body seems to gain more skin tags every month and the skin on your hand is wrinkling a little, inside you still feel like a child. You still need your mum to hold your hand when you are feeling down, your dad's praise when you have done something good and the rediscovery of french skipping makes you want to put your hair in pigtails and shout yee har!

I worked alot of hours this week, 30 in three days but loved every minute of it. Spent one of those days in the children's ward. It was great because I was able to give continued care to the boy with Special Needs from yesterday. And spend some time talking to his mum. Outwardly appearing very competent, very together but after finding out about B, she had a few tears when talking about the stress of it all. Some of us know this so well. It's a different world and if your child has complex medical needs as well as special needs, its a continuous roller coaster of emotions and trying in between to fit life in. Unfortunately sometimes life just cannot fit around them and the need to multi-task and rearrange becomes a regular occurrence which can wipe you out. I love what I am doing and if I get to meet people who for just a tiny time I have helped just by listening for 10 minutes then it reconfirms that I am doing the right thing. She thanked me for being there.

Today we had practice for our practical exams. I am very nervous about this. 3 scenarios in 15 minutes. Real people pretending and us having to remember the "script". However competent I feel can be wiped out by nerves and blankness comes in. Fingers crossed I get through. I do not want to have to resit. Mock on Monday, feedback Tuesday and actual exam Thursday. In the meantime, assignment is due Friday and written exam to revise for for the week after.

Yesterday I got a report from school on all incidents of B's headaches since September. Coupled with the home incidents, its 27 days. Although I didn't make a written note for the first 3 months so it will be alot more. 27! This is in preparation for our upcoming Neurologist appointment to talk about what to do.

and then its Friday. Wine time, B comes home time and perhaps a bit of relaxation time. I am sitting here, smelling her dinner (spag bog in case you are interested) cooking in the background, listening to her in her bedroom, door open, music on, her singing. It makes me smile every time. More so because the music she is listening to is from my era and I love it! Not quite El Divo though :) More like Rave!

It's the weekend.......YEAH! Hope everyone has a good one.

She goes from strength to strength

Forgot to mention. how could I!

Beth got awarded Chairball Player of the Season on thursday at School. She was completely surprised and got this fab trophy

Chairball is a disability sport played in wheelchairs and its a little like netball from what I can gather?!

Here is Beth in her red vest for Red Ravens (her team)

She just keeps on achieving! What a star!

A perfect weekend

Apart from a summer cold! But the rain didnt come and the forecast had been heavy showers. But it was beautiful. We went down to Kent on friday afternoon and met my mum, my uncle, my cousin and her daughter at a campsite near Dymchurch. M met us there shortly after. It was our camping weekend and a chance for us to try out our new tiny tent as you can see. Lots of room inside in bad weather!

We chilled out, listened to the sheep in the next field, went to Dymchurch and went on this and ended up very wet!:



















and we managed to get B on some rides:

Then the sun came out properly and we went back to the campsite and chatted and played ball games and relaxed. It was lovely.

My cousin, M and S my other cousin's son.


















and the tent? If it rains in Derbyshire, we could throw a party in it.

Roll on August.

My B Worries

Ok better out than in. I'm feeling a bit under the weather too which doesn't help. Had to leave work today at 9.30 after my fuzzy head stopped me from putting some vital information on a theatre chart.

So a few things bothering me that are better out than in and for those who like to get updates via my blog on our life, an opportunity to see whats going on. If you are interested.

1) B has put on weight again. Ok, I could visibly see it but school have weighed her and its only 1.5kg since April. Not too bad? Hopefully not. You know how hard we have worked on getting her weight down and since this weight gain puts her at the same weight at Jan 07. I say that's pretty good for a girl still growing? Right? Hope so. Just need to keep it that way.

2) Her feet. I'm very worried about the neuropathy in her feet. The coldness and the injuries she is starting to sustain and the pain after swimming. I am pleased she still feels pain because when she doesn't that is another step forward on this horrid disease trail but this development is still one step towards it. And then she doesn't tell anyone when it does hurt. Only me! and I am not there at the time!

3) I still haven't quite got over her breathing difficulties, fear and panic attack from a couple of weekends ago. I am worried about her sleeping which is ridiculous and I don't have so much to fear as others do on that front. (I don't think)

4) She changes boarding house this September. She has been in the same one since she started Treloar. None of her friends are moving up to the same one but she knows one of the girls who is and has requested to share with her. I am worried about them knowing her needs, her routine and her not speaking up for herself. Feels a little like she is starting all over again but knowing my girl she will be ok.

5) Why is it that school do not see her swallowing difficulties? as in her coughing episodes when she drinks. I am not sure if I am being OTT by asking her Neuro/Paed for further investigation and then if the results aren't good the impact on her life? Or is it better to see what is happening to try and prevent further damage or is it inevitable with her that her swallowing ability will get worse. I just don't know.

6) and then these headaches that never end and the fatigue and nausea that sometimes come with them. and the growing list of medicines she is taking and concerns over the side effects of those? What will the Neuro put her on now?

and the good news

• Balder w/c comes in less than 3 weeks
• B is deputy head girl next term
• We are going camping tmw and the weather is going to be awful...(ok im trying to remain positive about this - thats what rain capes are for right?)
• I have lost 13.5lbs in weight in 5.5 weeks.
• B's end of term is two weeks, mine is three weeks...YEAH! (not mentioning the exams before that......)

and

tomorrow is friday.....:)

"Now you are a proper nurse" said M

Why? Because I gave my first injection! My guinea pig was a 14 year old boy. The site was his thigh and the verdict? "you were good" he said. He is now my best friend.

Me, it took me about 10 seconds to pluck up the courage to stick it in. My hand was wavering in air for that long. Not much different from stabbing a rotten mango but a little. Mangoes don't tend to wince I have found. I don't usually apologise to the mango either or say "cheers thanks for letting me do that". Mangoes don't need plasters (not even the one with little animals on). But you can use the mango again.

I did a throat swab the other day too. Little boy nearly vomited all over me with the gag.

oooo I love it!

(I do!)

Guess what it is?

We got this delivered today for B. Guess what it is? and if you belong to SK no cheating!

I need to learn to say no

Ok, so the play specialist from the children's ward comes in yesterday and starts sorting out bags of toys that have been hanging around in our ward for a bit. She asks various people if they want this and that so I pipe up, if you have anything left over, we are doing a charity fun day in August and can use stuff for our toy corner.

BIG MISTAKE!

10 minutes later, I am wheeling a manual NHS wheelchair designed for a person on the larger size to my car with boxes and bags full of toys. Including "two cuddly toys for you to raffle". I get back and there is more! My boot and back seat are jammed full of stuff. I have no clue what is in them, I am too scared to look. Even more scared to tell M that yes, I have more stuff to put in our SK loft. :)

All I can say is them kids better play with them! :)