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! :)