Sorry I haven't updated sooner! I couldn't until I had good news, which is why it's taken this long! Elin smiled today for the first time since Christmas Eve. We've had a pretty tricky few days involving antibiotic induced bottom explosions (oh, how I love to strip a bed and an Elin twice a night for almost a week!), coughing fits, worryingly shallow breathing, impetigo, lots of snot and saliva and not a lot of sleep for anyone at Drake Towers. Poor, poor Elin. It's been pretty heartbreaking to see her so exhausted and poorly and making little sounds like a newborn seal pup. Christmas has kind of passed us by in a bit of a sleep deprived, snotty blur. I usually love to share my Christmas day pics on my blog but Elin was so poorly we barely got any I can use- she just looks too sad! I have included these though- just for the record!
Soooo many presents and these weren't even all of them! Thank you so much to those of you reading this who contributed to her huge Christmas swag- she had some beautiful, amazing gifts. You know who you are!
New Christmas Day dress on but not feeling the vibe :-(
Into festively personalised P.J's and off for a nap by dinner time. How sad :-(
As you can see she wasn't herself at all, and it got worse hence our trip to hospital on Boxing Day (see previous post). Thankfully, she has seemed to 'pull an Elin' and has bravely rallied herself just in time for New Year by the looks of it!
The next photo was taken today and pretty much the first smile we have seen since Christmas Eve. We have had family up visiting from London so Elin's little pals Arthur and Tabitha were on hand to amuse her and coax out one of those famous grins! Sadly, they were actually leaving today and so Elin missed most of their visit in a sleepy haze :-( In summary, Drake Christmas has been something of a write-off but as usual we are staying positive and hoping a healthier and happier start to the New Year is a sign that 2015 will be the best year yet for our girl. Happy New Year folks, have a great time tomorrow night wherever you are and whatever you're doing. Keep smiling!
Isn't it funny how everyone likes everything to be perfect at Christmas? A lot of families seem to be feeling under pressure to get everything perfect. The food needs to be perfect, presents have to be right, the kids need not to fight and argue just for one day etc etc lest there should be that most damning of declarations "Christmas is RUINED!!" Well, it goes without saying that Christmas, however badly things go off course can never be ruined as long as we have Elin. Way too many of our friends along the way have come to learn the true meaning of Christmases forever more being ruined and it's them I think of each and every year. Oscar, Lauren, Harvey, Annie, Charlie, Kate....each of you deserved so many more Christmases than your short time here allowed. When I was a kid it was snow I used to wish for most, I loved it and the idea of a white christmas was too irresistible for the romantic in me to ignore. I was of course, almost ritualistically disappointed. Now, obviously, my wishes are simple and straightforward. I wish for Elin to be ok. That's all.
Last year Christmas Eve wasn't great for poor Elin, we ended up in hospital with dystonia. This year Boxing Day hasn't gone according to plan. We had to go to hospital today after a pretty bad deterioration in her cold and cough over Christmas Day rendering her struggling to breathe from coughing and unable to tolerate her feed causing lots of continual retching. She went very pale and continually growled with her sore throat. She slept most of Christmas Day and not even the opening of her presents could raise a smile! Luckily for us, our favourite doc was on duty, Elin's guardian Angel who saved her life when she was a week old in special care and provided much comfort to us back then, too. He sorted her out with some magic antibiotics and we are hoping she will be back on form very soon. However, a quick dash to hospital for antibiotics is small fry really. She's still here with us now, in front of the fire, listening to Monsters Inc and tasting some chocolate. Who knows- soon she might even give us a mega-watt smile again and we will forget all this in a heartbeat.
So thank you, Santa..for another 'perfect' Christmas- for we are all still very much together and more grateful than you can know.
Oh...and guess what.........
the kid in me is pretty grateful today, too :-)
Lots of love
xxxx
I don't know if I will get chance to update over the next couple of days although I will try and add Christmas day pics as soon as I can! Hoping our very own little Tiny Tim is going to have a good couple of days and we might get to the Crib Service in St Mary's Church on Christmas Eve this year - religious or not you can't beat a couple of Carols in a beautiful Church before traditional Turkey butties mmmm!! She's been decidedly off colour today after a very disturbed night though no real dystonia to speak of- more just a bit grumpy and sleepy and quite stiff! I think she might be missing her friends at school. She did manage some smiles today and of course I caught one on camera. She also hung her new bauble on the tree- it's a very special one I think blog fans might recognise it's main feature! Thank you Nanny! So until next time, enjoy what I believe is the best day of the year (Christmas Eve) and have a wonderful Christmas Day, too.
"And so it was always said of Scrooge, that he knew how to keep Christmas well. May that be truly said of us, and all of us! And so, as Tiny Tim would say, God bless us, every one!"
Christmas has started at chez Drake and that's official, because the tree has come down from t'attic. Not just because of that though, but because today we took Elin to see a special screening of 'The Snowman' and you don't get much more christmassy than that. 'The Snowman' was always my Mum's favourite, then by osmosis one of my favourites. Then, Elin's wonderful childminder encouraged the obsession as her little boys played it pretty much on repeat from October onwards in the years Elin was with them. Since then we have played the DVD for Elin each year and her enjoyment of the music really can't be denied, she visibly listens each time and smiles her head off. Why wouldn't she? It's beautiful. So, when I discovered that Chester Cathedral were holding a screening of it, along with a 25 piece orchestra playing the music, we just had to go and take Nanny too of course.
Elin hasn't had the most relaxed week in the world so I was a bit worried about how she would react. The Cathedral was absolutely swarming, not only because of the screening but also due to a Chronicles of Narnia exhibition (which I would also have loved to have seen!) . I have to say it wasn't particularly well organised, you had to queue all the way through the narrow stone corridors , continually bumping into people trying to get out. Not much room for passing buggy's/chairs. Then, on arrival at the box office we were told to turn around, go all the way back out and around to the side entrance of the Cathedral- as were many others. People were pushing to get in and 'Snowmen' audience members were pushing to get back out. Not good. I wondered if it would have been too much to put a small sign at the entrance telling 'Snowmen' visitors to go to the other door. Or maybe one of the countless high-vis stewards could have simply shouted it out now and then to the teeming crowds of people?? It could have been pretty easily avoided- I don't suffer disorganisation very well! If it hadn't been christmas I might have complained, but I didn't want to be a humbug.When we got to the other door we had to wait ten minutes and form another queue. Needless to say all this had taken it's toll on Elin who was now bouncing around in her chair in the grips of stress-induced dystonia. I have to admit I was worried about whether she was up for an orchestral performance in a vast, unfamiliar space.
I needn't have worried. It didn't take her long to calm down. As the orchestra started and the lighting changed she looked around, all wide eyed and wondering. So cute. The orchestra played a good 20 minutes of 'The Nutcracker Suite' prior to 'The Snowman' starting. Elin wasn't interested in this. She shot me a few 'bored' looks and wriggled around on my knee as if to say 'Oh Mum what's occurring-I thought this was the Snowman?'. I started to worry again that she wasn't going to cope with the duration of the show. Then- it started. We immediately noticed a change in Elin (not just Paul and I- Nanny noticed too so it definitely wasn't wishful thinking!). She stilled, listened intently and broke into a wide smile which progressed into extra loud guffaws. This pattern repeated several times throughout the performance-she really did laugh very loudly!! To our minds, there is no WAY she didn't recognise the score of 'The Snowman'. She absolutely did and she loved it. And that, blog fans, is where Christmas begins for us this year. If the rest of the holidays are just as delightful, we will feel very lucky indeed.
Oh- we decorated the tree too, while 'The Pogues' were on. Carlsberg don't do Christmassy Saturdays.......
Sorry again for the lack of posts recently blog fans. Time hasn't really been on my side for the past few weeks- if you think the lack of posts is bad you should see the state of my house. I'm one clean pair of pants away from having to wear bikini bottoms to work. Anyway, Elin fell back into a dystonic cycle following our visit to Alder Hey (quell surprise). We upped her Diazepam slightly and she does seem to be perking up again now. Having said that she has also had a little bug- she's been sleeping a lot which is most unusual for Elin- so that could always affect her dystonia negatively. I think she is finally improving and I'll take a slow but steady recovery if it means we could just have a couple of good weeks over Christmas! I'll keep you posted.
Today was that time of year again, Elin's school concert. Considering how poor she had been over the weekend and leading into the week, she did brilliantly. I was so proud. There was no dystonia in sight (granted she was on the knee of her best buddy key worker and not sitting in a dreaded chair) but she did take part in the whole concert and was happy to do all the actions-with a lot of help of course-she really was quite relaxed. Must be the family history, none of us Drakes being exactly shrinking violets! It's in her blood :-) I was very brave and didn't cry. Until the end, when I sobbed like I'd just been told global reserves of red wine were running out. Seriously, you'd have to have a heart of stone not to get emotional in a situation like that wouldn't you? It wasn't just Elin either. All her little school pals, each with there own issues and complex conditions made me proud too they were amazing. Shout-out to all the key workers and LSA's who go on stage with the children, supporting them and encouraging them to perform in a crowded and slightly alien environment. It's not an easy task. It's also lovely to see such inclusion, as the children join the mainstream part of the school for the show. A real reminder of what Christmas means, if ever there was one.
We have one more show to look forward to, Elin's School Christingle service on the lat day of term. I have blogged about it before but that is when our christmas truly starts. So until then I will leave you with some gorgeous pics of Elin today. She was Cowgirl by the way! I think her 'Wild West' moniker would be Dolly Drake. So Merry Christmas blog fans from Dolly and us, after all...it's the most wonderful time of the year :-) :-) :-)
Sorry for the lack of posts, it's been a bit hectic here at Drake towers lately.
Elin is back on a 'good cycle' of Dystonia, which has been highly predictable since Monday was our long-awaited appointment with the movement disorder clinic at Alder Hey. She sat beautifully in her chair in front of the Consultant, smiling, batting her eyelids and generally emitting "definitely no movement disorder to see here folks, move along" vibes. Grrr. Madam. Luckily for us the Consultant, being an expert, did not really need to see her having a bad day as he knew exactly what we were talking about. It was really reassuring to chat to an expert int he field, as dystonia is such a complex condition that there aren't many experts around, especially not locally. It affects each child completely differently too, which makes assessment and treatment obviously extremely difficult. We had answers to some questions that had been bothering us (yes, this is common in children with HIE Grade 3 brain damage. Yes, the manifestation of not being able to sit in a chair of any description is common. No, we don't know why sitting triggers dystonia. Yes, often dystonia comes in cycles and repeating patterns. No, nobody has yet worked out why. Yes, there are plenty of medications we can try, no the cannabis trial is not for dystonia. Yes, DBS can be effective in children even with secondary dystonia like Elin. Yes, dystonia can get ten times worse than this. No, we cannot be sure she is still having epileptic fits etc etc etc) and have formulated a basic treatment plan using Diazepam, a drug she is already on, to combat the 'bad weeks' by increasing it only when necessary. Quite how this is going to work yet we are unsure, it will be easy to identify times for the medication to increase but how will we know when to decrease it again? 'Playing it by ear' has become our middle name. If THAT then doesn't work, there are other medications we can try. We also talked about an intrathecal baclofen pump, which sits under the skin and slowly pumps baclofen (which she already takes through her tube 4 times a day) into her system to try and combat the spasms. Im not keen on that, my research suggests a high risk of infection which was confirmed by the Consultant, but then conversely it has also had a really positive impact on some kids. Hmmmmmmmm.
I will have to keep you updated on the courses of action and how we get on. We are praying that something works, as seeing Elin's quality of life so rapidly deteriorate for days at a time can really take it's toll not only on her of course, but on us, too. I can cope with almost anything whilst I think Elin is happy but when she isn't -well, just imagine it was your child squirming and spasming 24/7 for regular periods of time while you watched on, helpless, and you get the gist.
In the meantime I will leave you with this video, taken on the day we went to Alder Hey- like I said- what movement disorder????? Madam!! G'night folks.
