Passport to freedom!

Ever wondered how to get passport photo's done for a severely disabled child? No, nor me! Until I had to of course (Disneyland Paris next Easter yaaaaaayyyyyy) which is when I realised things might be a bit tricky. Have you ever read the guidelines for a passport photo? Ridiculous! Why aren't you allowed to smile?? Not even a tiny weeny 'Im going on my holidays' sort of smug half-smile! Leaves everybody looking like they just escaped from an institution for the criminally insane on their passport, which can hardly be reassuring for border control. "Oh go on through Mrs Drake, I see you bear an uncanny resemblance to Myra Hindley. Have a nice holiday!!" Anyway this is not the only rule. There are about ten of them. Including things like you have to be looking square onto the camera, have your eyes open and your mouth shut. I went on a few forums online to get some tips from other Mum's about how to achieve this when your child cannot sit/stand/support themselves, has no head control, rarely shuts their mouth, cannot focus their eyes and laughs like a band each time they see a camera flash. I was relieved to discover that you can include a covering letter explaining your child's condition which is usually accepted, though they do like you to achieve as many of the guidelines as possible.
I tried a few times at home, you can get a computer programme which makes sure they are the right size etc. I just couldn't do it. So the next time I was in town I popped into Max Speilman and spoke to a very helpful girl who explained she had done it many times for disabled kids and she would wedge the white disc thingy (technical term) between Elin and her chair. She was lovely and reassured me it would be fine. I made a mental note that the next time Elin was tolerating her chair, passport pics would be first on our to-do list.  Yes, I know it's not until next Easter- take it up with Theresa May! Anyway today was that day.
The girl in Max Spielman was so, so patient and understanding. She must've nearly run down her camera battery trying to get a good one. We tried Elin's chair all ways, but struggled with the fact that she kept turning her head from side to side (she can't stay in midline unaided particularly well). In the end we settled for a sort of semi-reclined position and we got one. Super hard also because Elin kept smiling! She needed to be in a good enough mood to sit nicely but not good enough to laugh each time she heard the camera shutter!! So it was tricky. But I must praise the girl in the shop, she really was amazing so were the people waiting patiently for her to finish with us. The end result is not going to get Kate Moss quaking in her boots but the girl is confident it fits the spec enough not to be rejected, so fingers crossed. Im just glad mine doesn't run out for another year so Im still 23 on my photo and fairly passable, I don't think I'll bother getting a new one until they get rid of photo's altogether and scan your eye instead or something (does my eye look fat/old/wrinkly in this????!!!)  :-) Hope you're enjoying your weekend folks I'll keep you updated on the Passport saga as it unfolds. Lots of love xx

What the......? Mum???? I was promised a glamour shoot!!! 

The end product

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Throwback Friday

Greetings Elin fans.  I am immensely relived and happy to say that Elin really picked up after Tuesday. She had the best week ever at school and has been so clever she even got a 'Top Banana' sticker yaaaay! Basically after a nightmare week last week she is back to being on top form and in fine fettle.  The Consultant appointment on Wednesday also went really well. Her Consultant is amazing, very thorough and considerate.  At our request she is going to refer us to the movement disorder clinic at Alder Hey, in an attempt to come up with a plan for future dystonic attacks! Not only that but she is suggesting Elin be considered for a new drugs trial aimed at combating dystonia. It involves a simple mouth spray- containing, apparently some form of Cannabis! (Insert your own joke here) We have been researching this for some time and are very interested so looking forward to hearing more. A similar trial has already recorded very positive effects on people with MS apparently.    I will be sure to keep you updated on this.
In the meantime, back to throwback Friday.  Given that Elin has been back to school this week with all her special teachers and friends, I thought I would share Elin's 'first date' pictures with you from before the Summer. Im not sure why I haven't already uploaded these, it must have been something I forgot to do! Anyway this was Elin and her classmate (and boyfriend) Llew. He's a couple of years younger so it makes her a bit of a cougar . But it's a good match because they both understand Welsh and have giant cheeks :-) :-) The 'date' was Llew's Mummy's birthday party. It was a lovely night, though Elin fell asleep and Llew felt a bit poorly and had a bit of a cry. In fairness I've been on worse dates in the past, so it's all good. Definite potential for date number two !!!
Have a good weekend Elin fans, it's been a very tiring but happy week for us. Might have to borrow Elin's hot tub tonight whilst cradling a glass of red (or six) I think. Nos Da all, thanks for the continued interest in our girl.

Elin's Parisian inspired 'first date' outfit.  Tres Audrey Hepburn circa the 'Sabrina' period.

Elin and Llew. Llew is a Welsh name meaning 'Lion'. Too, too cute.

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Sleep Overs

FYI Anyone with pre-teen kids who need to understand about disability, my friend drew my attention to this book by the massively popular author Jacqueline Wilson. I haven't read it, but there are many recommendations on Amazon. It's about an 11 year old girl, Daisy, who is worried about inviting new friends to her house for a sleep over in case they don't understand about her severely disabled little sister, Lily. I think anything that makes this subject accessible to kids is fab. Nice one, Jacqueline Wilson! http://www.amazon.co.uk/Sleepovers-Jacqueline-Wilson/dp/0552557838 x

PS Elin update- still very dystonic. Managed the first day back at school but had a pretty stiff and stretchy morning, bit better in the afternoon. We are off to see Consultant tomorrow and will be asking (again) for a referral to the Alder Hey movement disorder clinic. Will update then. x

P.S

http://www.bbc.co.uk/news/world-middle-east-28992138


Just seen this on the news, it beggars belief and surely stretches the bounds of what human emotions can bear. The world feels like a very sad and scary place tonight. I wasn't going to share this, it's too sad. But the Father's story needs to be seen, and told. Count your blessings tonight people in our cosy western world, I know I will be. But I won't forget this Father and his boy in a hurry. Totally, and utterly, devastating.

Throwback Friday

...Is cancelled!!! And so is Christmas!! And the Tooth Fairy isn't real!!!! Baaahhhhhhh Humbug!!!

It's not been the best few days here at Drake Towers. The Dystonia didn't get any better and we spent a large chunk of Thursday on Children's Ward. I was concerned there may be something underlying causing Elin's recent attack of Dystonia, like an infection of some kind. There appears to be nothing. It was quite interesting that her SATS remained at 100% throughout each 'attack' though, that at least was a comfort in a very small way. The Registrar contacted Elin's Consultant who advised increasing her Baclofen medication. We have an appointment with her Consultant on Wednesday afternoon so she said she would review us there. Hmmm. It's just a mystery, this condition. It was like a switch went off last Sunday and she changed completely. The only saving grace is that technically, the switch might just flick itself back on again at any time. Fingers crossed. In the meantime today has definitely been a better day, and the only day we haven't had to administer rescue meds to stop the spasms. She has laughed a good few times (especially when over Daddy's shoulder, looking in the massive mirror. Vain!! She doesn't get it from me honest.....) But it's so frustrating and upsetting to watch her go through this, especially after weeks  and weeks of being so good, I think we've been a bit spoiled. Tomorrow I will be extremely optimistic and try not to worry again. It'll pass. But for tonight I'm frankly going to be in a right strop, drink red wine, scoff a Tesco Indian,  have a nice bath and maybe a cry. All at once.

HUBUG!!!

Dystonic disturbances.

Pride comes before a fall, I spoke too soon, don't jinx it etc etc. After me waxing lyrical about the best holiday ever Elin's not having a very good final week. It started on Sunday- the extra Dystonia -and arrived faster than Dorothy's tornado.  One minute she was brilliant and the next she was stiff, wide-eyed and twitching. We hoped she would sleep it off but she's not really improved since then. She has no temperature, no obvious gastro/tummy issues and nothing I can see that may be bothering her. By late afternoon each day she is so dystonic that almost any position doesn't seem to be helping. We administered her 'rescue meds' today for the first time in weeks and weeks. Though she is still responsive and (at least until the end of the day when she is tired) smiling and laughing she is most definitely not herself. Changing her position continually is exhausting for her and for us too- she's a pretty chunky monkey now! I absolutely hate Dystonia and the way it affects Elin. It's like she is trapped inside her own body and her body is betraying her with it's convulses and shaking. It rips away her quality of life instantaneously, she can't focus on anything at all and sitting in a chair is absolutely impossible. If I'm being honest the worst thing for me is that she actually looks frightened, like she doesn't understand what's happening to her. Even though I know Dystonia is not actually physically harmful to her I would give anything to take this from her. Nobody who has no experience of this will ever know what it is like to watch your child fight against the constraints of what the brain is telling their little body to do. I know she will rally soon (we've been here many times before) and I know that many children have to go through a lot worse, even. But I can't force myself to be consoled by that because I don't want to count my blessings that she's not going through anything worse. I don't want her to be going through anything at all. I think she's been through enough :-(

Throwback Friday

Throw back Friday. I'm cheating. This is a link to a video of Elin that I uploaded to this blog back in 2009, not long after I started writing it. It shows her turning to find a rattle, we were so pleased !!! (As demonstrated by the continual cheerleading throughout!! We are learning as parents too, if it was now we would know we should probably actually be silent and let her focus on the noise of the rattle not constantly egg her on! What can I say? We were excited. This journey is a learning curve for us all!) I am including this today because of the stark contrast to my earlier piece on Elin watching things on the computer. What a difference we have seen in her reactions and understanding since 2009! It's hard to see the progress sometimes, with it being so slow and also like any parent when you are with your child every day you don't notice the changes so much. But video's like this are proof positive of how much she has come on in the past few years. It makes me so proud.  There are probably better videos too, I will have to have a search. Happy Friday everyone!

http://cerebralpalsyjourney.blogspot.co.uk/2009/12/elin-turns-to-find-rattle.html


xxxxx