Death of a Sophie....

A very sad day at Drake Towers last week. Sophie died. Regular blog readers will know that Sophie is Elin's little squeaky Giraffe , who has been travelling to school with her every single day for years. She basically travels everywhere with Elin in fact and is her 'object of reference' for travelling-in-chair time. Sophie even comes on holiday with us (you may remember photographs of her frolicking on Blackpool beach in the Summer). Anyway last week I arrived home to a grim looking Paul and Caitlin who gently informed me of some bad news. Paul had arrived home to find Sophie lying in a puddle in the road. It was a hit and run.  She must've fallen off Elin's buggy as my Mum met the bus from school that day. She didn't stand a chance immobile in the road at school-run time. As I gazed on in horror, Paul presented a weak looking Sophie and imparted the even worse tidings- her squeak was gone. They had tried to revive her by drying her out and giving her special squeak- CPR. But it was too late. Sophie as we knew her was no more.
I cried.
Yeah, I know. Ridiculous! Maybe I'm a little over tired lately? But seriously, Sophie has been everywhere with us and we've never once lost her. She's part of Elin. I cried a bit more as Paul and Caitlin began to give each other 'she's gone mental' sideways glances whilst attempting sympathetic noises. I felt not unlike Tom Hanks in 'Castaway' where he swims through the water crying his eyes out chasing after his friend Wilson. Wilson being a basketball he drew a face on and talked to for years whilst stranded on a desert island (don't mock till you've seen the film- heartbreaking I swear). Anyway Sophie was my Wilson. I talked to her, I made her talk to Elin. She made Elin laugh. I was bereft.
Despite my instinct to conduct a full on burial and short service in the garden (Paul and Caitlin by now had gingerly vacated the room, probably to find a phone number for a few men in white coats, leaving me to wallow in my grief) I decided that Sophie could live out the rest of her days in Elin's bed along with Monkey and Easter Bunny. She can still blow air over Elin from time to time where her squeak used to be. Pfffft.
Luckily basketballs and toy giraffe's are a damn site more replaceable than actual living, breathing things. Thanks to the gods of Amazon we are now in possession of a new Sophie with only a two day Sophie hiatus. Don't you just love the internet? But she will never be our Sophie to me, not until she has put in the same time and effort and had just as many adventures as the old faithful giraffe. Welcome to the Drake's (new) Sophie. You don't have to be mad to live here.... but it helps!

Old Sophie accompanying Elin to school earlier this year.

 New Sophie. 

PS New Sophie's squeak sounds different. It's not as good!! Wahhhhhhhhhhhh! WILSON!!!!

On My Own

*Caitlin Plug Alert* So Elin has been enjoying watching this video today of Caitlin singing 'On My Own' from Les Miserables at a concert we went to see last night (too late in the evening for poor Elin to attend unfortunately!) Caitlin recently learned she has the part of 'Eponine' in the forthcoming school musical version of Les Mis so this was great practise for her! PLEASE excuse the hilariously shoddy video work at the end but Paul was crying so he couldn't see what he was doing hahaha. Enjoy, Elin fans! x

https://www.youtube.com/watch?v=vUJAOIsyU-M

Throwback Friday- Monkey Business

The other day I caught Elin sleeping in the midline- quite rare (her head is usually turned to one side or the other) and she looked so cute I had to share.  She was snoring her head off! (She gets that from me unfortunately) Even though she looks so beautiful it was actually the prescience of monkey in the picture that really made me emotional- you see he has been watching over her since the first day she was born. They used him to hold up her ventilation tube sometimes when she was on ICU so he really has been there through it all- he looks a lot bigger in the first picture eh :-)
Happy weekend folks- sorry about lack of posts, inspection at work looming equals not a lot of time for updating. Normal service shall resume soon xxx

Throwback Friday -Mark 2!

I've already done a throw-back this week so Im cheating but I just found this from September last year. I know I have had a few new blog readers lately (thank you!) so I thought I would re-post this, for those who ever wondered how Elin's story began. This was a guest piece I wrote for another blog written by a Midwife who posts a different 'birth story' each week and was keen to find out about ours. I could write a book on it but, with the constraint of a blog format and not wanting to send everyone to sleep, this is what I came up with. People were gracious enough to read it and be very kind about it. Thanks again to Clemmie for asking us to tell our story on her amazing blog which rocketed into the media stratosphere about six months ago when she wrote a fab piece about  breast not always being best (and sadly sparked huge controversy as a practising Midwife between people who seemingly cannot accept a diversity of opinion on these matters). Anyway here it is for those who didn't catch it the first time. The beginning of Elin:  http://gasandairblog.com/2013/09/11/ruths-story/

Sunny Saturday...

....Was not, you understand, sunny. Weather -wise that is. But it was sunny natured and that's better in my book. Our girl is back. She has been happy as larry all day and even sat in her chair for a good few hours whilst we went shopping this afternoon. A-MAZING. We haven't seen her like this for at least a week so we are delighted. Hope that's an end of whatever was upsetting her for a good while now! Of course I have some photo's to share...

Have an equally sunny Sunday folks!

xxx

Throw back Friday

Another tricky week for poor Elin, though the second half slightly better. Nowhere near as dystonic, but just not herself. Following our hospital visit last Friday, we went to the doctors on Wednesday this week as I was starting to feel there really must be some infection somewhere niggling away at her. He couldn't find anything at all. That's well over a week of poorly-ness for Elin, without any cause. A week without a smile from her is enough to send us crackers, it's heartbreaking but you just have to get on with it. Anyway happily by yesterday the famous smile had returned, albeit sporadically and today Paul said she even came off the school bus laughing. I really hope she is recovering from whatever has been bothering her, she doesn't deserve to feel this way. I always get a little bit introspective when she is poorly. It's like it reminds me of how serious her condition is, we are so used to her being so well and it's so easy to forget about the list of diagnosis' for so much of the time because she is just our gorgeous Elin. Also, you can deal with anything as long as she's happy and when she isn't- well, everything is much harder to accept again. Anyway I've also been thinking about all the time we have spent in hospital over the years. Not as much as some parents of course, but plenty more than others. We are lucky to have an amazing Children's Ward who know Elin inside out, it makes those necessary visits much less scary. On our last visit our favourite doc was there-the one who saved her at birth. He treats Elin like a celebrity. Actually they all do. One of the most pivotal hospital visits for me was the first time we had to rush Elin in when she was in full seizure mode. I was terrified. It marked a new beginning for us in terms of Elin's medication and treatment, and also in terms of what we were dealing with. Even though it was horrendous at the time and for months to come as we all adjusted (especially Elin) it's kind of funny to look back and see how far we have come and how some things can seem like the end of the world at the time. I hope we never have another 'pivotal' moment again but if we do I know we'll get through and come out smiling. Especially Elin, the comeback kid. So this weeks throwback is from that weekend on children's ward when Elin was two years old and I worried if things would be ok ever again and of course, they were. Happy weekend folks. I am hoping to spend it sleeping-catching up on all the sleep Elin robbed us of this week!! Have a good one xx

And one from this evening to brighten your day....

xxxxx

Dystonic Disturbances -Part Deux

Well poor Elin is suffering with the evil, nasty, hateful, horrid affliction 'Dystonia' again at the moment. Just like last time, we watched helplessly as a switch seemed to flick off in her brain (it really is as quick as that) and she became too stiff and spasm'y to do anything at all other than be held and cuddled. Thursday was just about manageable with continual holding and regular changes of position. But by friday the Dystonia was off the scale again, just like a fortnight ago. She required her rescue medication at school, slept for hours then proceeded to wake up and continue to be gripped by Dystonia's powerful and unforgiving claws. We went to Children's Ward, knowing we were unable to give her a second dose of the rescue medication without medical supervision. She was given a second dose and mercifully the dystonic spasms  cut out immediately. The registrar gave us instruction to up her Diazepam (again) with the only problem being that Diazepam is notoriously easy for the body to build a tolerance to, therefore basically rendering it ineffective. Elin has been on Diazepam for 20 months and I wonder if this has happened with her. For now we have to keep cranking it up until she is on the highest dose, then we can move forward from there.
We got home last night from the Ward and Elin had a good night's sleep (probably a side effect of the double-dose of strong meds). However this morning it wasn't too long before we observed the familiar dystonic movements. By this afternoon they were becoming increasingly strong and regular. The only way we have managed to calm her and stop the spasms currently is by lying her flat on the hard wooden floor (with a mat under her I hasten to add) where she now is fairly happily batting away at her chime -about toy and kicking her legs slowly in a very natural and 'normal for Elin' way. I have no idea why lying her out on a flat surface helps her, but it has done time and again.  The inability to understand this dreadful part of her condition is hugely upsetting and frustrating for us as parents. No triggers, no pattern, no rhyme, no reason. No ability to help her. Just hoping it will go away again, or that an increase in meds will work (Im not convinced). Seeing her like this is incredibly difficult and exhausting both physically and emotionally. I can't imagine how it's making Elin feel (and if Im honest I don't want to imagine it).
For now I guess we have to manage this as best we can, whilst we keep our fingers crossed for a speedy response from Alder Hey's movement disorder clinic. Taking things day by day is something I've never been very good at, I like a plan (and I like the plan to work!) .  I'm just not a 'see what happens' or 'go with the flow' kind of person. I'm a planner. I like to know what's what. My calendar is run with military precision, I never miss anything, I am never late, I never forget anything.  I like to have answers to my questions and reasons for everything, especially where Elin is concerned. I'd love to be all bohemian and relaxed about everything in life but I'm just not. It's not very cool, but it's just how I am. However I'm learning that I don't really have a choice in this matter so sucking it up and getting on with it is the only option. (Yes, I'm still learning this after six years! It's a slow process, changing the habit of a lifetime!) So it's deep breaths and 'see what tomorrow' brings time whilst we silently pray that the evil Dystonia leaves our baby girl alone, because seeing her suffering and not being able to help is by far the single worst thing we have to deal with in this circus that is Cerebral Palsy. Pfft. Send in the clowns. :-( :-(

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.

xxxx

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