Talk To My Daughter.....

Talk to my daughter
Look beyond and try to see
The child that is inside her
Not her disability.

Talk to my daughter
She's a person just like you
Sitting here beside us
She wants to be included, too.

Talk to my daughter
Please try not to feel so scared
Though she can't reply to you
She will feel, and know, you cared.

Tak to my daughter
How would it feel do you think?
To hear voices all around you
But not make that special link.

Talk to my daughter
She's a child, she likes to smile
Hold her hand or make her laugh
Just speak to her a while.

Talk to my daughter
It would mean a lot to me
That you made a little effort
She is my whole world you see.

So please talk to my daughter
You might be quite surprised
To feel such a connection
And see her through my eyes.

It's about time...

Ein's having a good if a little boring week after the excitement of last week! Rain has stopped play on numerous occasions and we have been a little trapped indoors! Never mind. One good thing that's happened is that Elin has FINALLY had casts made for a new pair of splints. Wrexham has lost two Orthotists we have been told, in the past couple of months and have been unable to replace them as yet. This means that an already over-stretched service has become almost impossible to gain an appointment with. I was told to call back every day for the entirety of the Summer holidays in order to get Elin in, and finally we had some success last week. Obviously this can't be helped but it's incredibly annoying. Elin's current splints are no longer really fit for purpose, marking her and not fitting properly. They are important for when she stands up in her frame and also for when she's sitting in her chair- not least because they protect her legs a little when she is having an attack of dystonia on transport! Elin has very awkward legs and feet with pretty pronounced turns so getting splints that are right can be difficult. The last orthotist was brilliant, but sadly she has left. I hope the new splints are ok because it's a long process just getting them in, it can take a few weeks for them to come back once the plaster casts have been sent off.  I did my best to beg a new pair of boots for school too so am hoping she gets the nice patent black ones we requested! Will leave you with some pics of a very good Elin somewhat enjoying having cling film and plaster wrapped around her legs!

xxxxxx

Brighton Rocks

Remember my Disneyland posts? You should do, there were four of them and they went on for...ev....errrrr hahaha. Well I think I described a 'good Elin spell' like a harmonious Universe, when all of her planets align and create the best version of Elin there can be. In Brighton this week, Elin's plants aligned. Hurray!!! Definitely no coming home early from jollies for us this time- it was brilliant. Elin was a superstar and even managed to sit in her chair for the majority of the time- only becoming agitated after a full day and lots of sea breeze in her face which is fair enough! We are so proud of her. Not only did she love Brighton but she absolutely adored seeing baby Gruff! Once again she proved to us how much she loves having  kids around. It was delightful to see her responding to Gruff and he to her. Gruff has just turned one and is at that amazing age where he is interested in everything and Elin lapped up his energy. Pretty heart-melting stuff! He is clearly a genius (we're not biased) as he very quickly learned that Elin loves a good nose beep, after seeing us do it he thought it would give it a go himself. Naturally, she was chuffed as a butty by this. I draw your attention to exhibit A:

Yes, we are aware how cute this is!

Gruff aside, Elin also enjoyed a stroll (wheel) along the pier, her first trip to 'Wagamama's' , a spot of shopping, a ride on a carousel and plenty of family cuddles. What a cracking holiday she had. Our only regret was not going for a longer period of time- it's quite a trip down for three nights (one being a stop-over in London with family to break up the journey)! However since we're likely to make it an annual Summer Drakation, we'll know for next time. Thank you Universe for hearing our wishes and granting us a little oasis of happiness this week. It's just what we needed. Until next time, folks...

Oh dear! How sad!

xxxxxxxxx

Take me to the beach.....

Sorry for the hiatus blog readers- nothing sinister, we've just been having too much fun to stop and post!!! Elin's doing brilliantly after her week of doom! She must have realised it was my birthday week last week and has been good as gold. I had a super birthday- especially as Elin's Aunty Sammy came all the way down from Edinburgh for her annual Elin snuggles! She could hardly believe how much Elin had grown since last year. I forget what a big girl she's getting! Speaking of my birthday you may remember I'm a twin- I have always said Elin looks more like my sister than me (annoying! ha) and my Mum has always insisted Elin is the image of my sister at the same age. So, I rooted around for evidence and found a photo of Karen and Elin, both aged 7:

Wow. Maybe Elin is more Erlandson than Drake after all??? Or just a great mixture of everybody ;-)

I'll leave you with some photo's of Elin enjoying her Summer holiday whilst I head off to pack- that's right! Second attempt at a break and hoping little miss behaves this time! We are very excited to be off to Brighton to play with baby Gruff's fluffy egg head. Yay! Wish us luck, hopefully we shall return with tidings of great holiday joy and some good beach snaps!! Have a good week folks....

Elin and Aunty Sam

Elin and her buddy Poppy

Enjoying one of her birthday presents.....

xxxx

The Pictures

Today we took Elin to a special Cinema screening for children with additional needs, funded by the fab charity 'Contact A Family' in partnership with local charity 'Your Space'. The film was the Disney film 'Home' about a little purple Alien voiced by Sheldon from The Big Bang Theory who befriends a girl voiced by Rhianna. It was great!!  'Your Space' is based in Black Park, near Chirk, so about a five minute drive from us- perfect! Elin absolutely LOVED it. She got to lie on a bean bag to watch the film and when she got fed up of that she got to lie on me :-) The Reception area after the film was a little cramped for Elin so we didn't stay too long but I look forward to the next event that they organise! There weren't any other children there with needs as profound as Elin's- there was only her and another little buddy from her school who were wheelchair bound for example- but what a lovely idea and a very worthwhile cause to enable families of children with any kind of additional needs to meet. I got some fabulous photo's of her enjoying he film and then made the mistake of plugging my brand new phone into my computer for the first time since I've had it, and I have lost all my photo's from the past few days :-( Sometimes I hate technology. It cheats you! However I did manage to salvage one photo as I had already uploaded it to Instagram! Thank goodness as it's one of my favourite recent Elin pictures and I would have been sad to lose it- we have so few of her sitting happily in her chair! She's been great again today and sitting well which we are really thankful about. A busy week ahead with my friend Sam coming down to stay with us from Edinburgh on her annual visit (and arriving on my birthday yay!), then the 'Cherish' fun day on Saturday and two days break before we head down to Brighton to see fluffy egg head Gruff! It was his first birthday the other day and his head is no longer as fluffy but Elin still adores him! Fingers crossed her good spell continues and we don't have to abandon another break away! I'll leave you with a pic from today of my big, beautiful seven year old baby :-)

It's over!

Elin is LOTS better. Almost completely back to normal. I'm scared to say it but I think it's over! She's laughing her head off again and generally being amazing. We will soon be weaning down her Dizepam back to what it was before the dystonia went crazy, so I'm really hoping she suffers no adverse effects from that. We haven't tried her in her chair yet so we'll give that a go today. In the meantime here is a pic I took after finishing Elin's physio this morning to keep you Elin fans going over the weekend. Have a good one, folks (and thanks for all the kind messages and well wishes we have received this week)!

You're my world...

"You're my world, you're every breath I take,
You're my world you're every move I make,
Other eyes see the stars up in the skies,
But for me they shine within your eyes,

As the trees reach for the sun above,
So my arms reach out to you for love,
With your hand resting in mine,
I feel a power so divine,

You're my world, you are my night and day,
You're my world you're every prayer I pray,
If our love ceases to be,
Then it's the end of my world for me".

 We're still not out of the woods. She got better, then worse, then lots better, then lots worse. We are currently resting in the limbo that is happy and smily again, no retching but with occasional bouts of bad dystonia coupled with a very gurgly sounding upper resp system. Thankfully not on chest (yet). She's sleeping fairly well again. Paul and I are scared to leave the house now-  someone may try to drive a stake through our hearts. We have forgotten what daylight looks like. What do you mean I'm exaggerating?? I need some Vitamin D truly! I'm using flour as foundation!!!  Ha. It's been a full week now and about time that this illness left our baby alone. Thank GOD we are on holiday from school because getting back to my brain- I can't concentrate. I need Elin to be better! This is not how the Summer holidays are supposed to be :-( Poor, poor Elin. Yesterday I put my mobile in the fridge and tried to put the butter on charge :-(   I can't stop watching her , waiting for a slight change, checking she's ok. I'm having bad dreams,  I'm crying at sad songs on the radio, even my emotion at the death of Cilla on Sunday may have been a bit disproportionate. (Elin is a big Cilla fan. No, really)
But, of course, that smile of Elin's is the sticking plaster I need to hold me together and let me know that she's ok and that everything will be fine, so it's a good thing we've seen it a lot today. Keep those fingers crossed Elin fans, she really does deserve a break now!

What's it all about.....Elin??

It's my party and I'll cry if I want to...

Sorry for the few days hiatus! Elin's not been having the best time since my post on Wednesday. The tummy upset has continued (though strangely no diarrhoea at all- just the horrendous dry heaving) and she has been unable to tolerate any bolus feeds. Thankfully, in the last 24 hours, the retching has stopped, though we are still currently putting everything through her pump very slowly to ensure she gets all her fluids and nutrients without it causing her stomach to spasm. Unfortunately, as the retching began to subside, the evil dystonia which has been hanging around in the shadows since Tuesday decided it would rear it's ugly head with a ferocity we haven't really seen since last year. Yesterday she needed knocking out with her rescue meds for the first time since...well, neither of us can remember when! Anyway it was pretty upsetting to see her so beset by dystonia that we couldn't placate her without heavy medication. I can never and will never get used to seeing her in that state. It's about the only thing left in everything we go through with Elin that can still reduce me to tears on the spot. We knew it was coming as there was an extremely slow build up of symptoms, she gradually got stiffer and more shaky as the week progressed and I gradually got more teary and anxious :-(
The good news is, she does seem slightly better today. There has been no retching aside from after giving meds (which have to go down as a bolus) and she has coped well with a gradual increase in her feed-which we are diluting with water to make it more tolerable- via the pump. She hasn't needed rescue meds today, although still severely dystonic we have managed between us with changes in her position, or keeping her on our knee. Also, she has managed her first smile since Tuesday. Tuesday!!! Can you imagine not seeing a smile for almost four days? We're beside ourselves. Also probably a little delirious since we have pretty much been consigned to the front room swapping Elin between us  for all this time. But we've had a fantastic run with Elin, she hasn't been poorly for soooo long and knowing what some parents deal with we know only too well that we can't take for granted how well she has been. I guess we were 'due' a bad week. Thank god for the Summer holidays though!
Today was my birthday day out with my pals. Nine of us were going for the day to Chester on the train for cocktails and a meal and then more cocktails. As anyone with a large group of friends will know, it's tricky to get everyone together on one date. Hence my birthday day out was nearly two weeks early :-) I was really looking forward to it but of course, I had to cancel.  I don't think Elin likes my birthday! (Anyone remember my 30th? Anyone? Yeah. It was BAD). Anyway my friends have been amazingly supportive as usual, calling and messaging, travelling home to see me anyway despite cancellation of bash and two of them brought an afternoon tea to me and a poorly Elin with cute little sandwhiches, scones, fizzy stuff and an amazing cake. I am a lucky girl, I love all of my friends so much. They just make everything easier, you know? Let's hope tomorrow brings the same amount of improvement for our girl. Oh if you're wondering how old I am this time- 34. But I feel 64. Probably look it too, especially this week! Can anyone recommend a good face cream???

Oh wouldn't you know the first smile in four days was for her Daddy? 

 Alternative afternoon tea.

xxxxxxx