This is transferred from Facebook in an effort to catch you all up! Unfortunately I can't quite figure out how to move the pics but promise posts will have pics from now on!
Our girl is growing up and that's partly why I want to connect
with you all again via this page. Life hammers by for all of us and the
future is uncertain. This was always going to be a space where we can keep you up to date with all the Rosa news and developments and share any ideas you might have for making Rosa's precious life even more special. She has got stronger as she has got older and I think we are more cautious. The fact is that Canavans Disease is progressive and this year that has been manifesting itself in the physical changes her body is undergoing, the disease coupled with the onset of puberty has meant that things are happening quite fast. We are eternally grateful that we have got to this point as we were told she probably wouldn't live this long and she is, as you know, a girl so very full of life and joy. We feel so grateful to have enough love, laughter and friendship to carry us through. Thanks all for being there and caring.
(Written Early 2020!)
Last year was a
rollercoaster for us as you know. Rosa did very well on the whole with
her general health. She has got stronger as she has got older and I
think we are more cautious. The fact is that Canavans Disease is
progressive and this year that has been manifesting itself in the
physical changes her body is undergoing, the disease coupled with the
onset of puberty has meant that things are happening quite fast. We are
eternally grateful that we have got to this point as we were told she
probably wouldn't live this long and she is, as you know, a girl so very
full of life and joy. Our main concern and challenge at the moment is
the progression of her scoliosis. She is becoming more and more twisted
and this is having various knock on effects including increasing her
digestive issues.
We have recently investigated the possibility
of spinal surgery, but, as we expected it isn't going to be appropriate
for Rosa. Not least because she has had both hips dislocated for a few
years now. This means she has no pelvic stability and so not only would
she need an epic spinal procedure, she would also need some sort of
surgery (the experts weren't even sure what) to stabilize her pelvis so
her spine could feasibly be held in a straighter position. The recovery
for these procedures could be well over a year and we are not even sure
of the benefits for Rosa. So that ruled out we are slightly at a loss as
to what the options are, other than watch it get worse. As ever we are
treating the symptoms as there is no treatment for the cause.
Immediately she has had a cast taken of her body to create a new bespoke
wheelchair seat. This is vital and urgent as she has changed shape a
lot in the 2 years since she was last cast and we think sitting in her
chair is causing her pain particularly first thing in the morning. Her
wheelchair is currently the only seating she has other than our laps
which continues to get harder the bigger she gets. The chair she has was
designed to grow with her but her body hasn't gone into the expected
shape so a new cast was required. The wheelchair service and Millbrook,
the company who provide the chairs have been brilliant and we have been
seen really quickly. We have a fitting on the 12th Feb and hopefully at
least in the short term she will be comfortable again. She was a
superstar at the casting which involved much faffing and blowing up and
deflating of a beanbag until it fitted and supported her body, she
beamed throughout! I am always reminded on occasions like this how far
she has come, in the early years wheelchair appointments used to be an
absolutely devastating experience for all of us. Rosa screamed and
wrestled and we came away with an unsuitable chair. I am always so happy
and proud of how she takes it all in her stride now. Our girl is
growing up and that's partly why I want to connect with you all again
via this blog. Life hammers by for all of us and the future is
uncertain. We feel so grateful to have enough love, laughter and
friendship to carry us through. Thanks all for being there and caring x
We finally saw a paediatrician this week. We are hoping but not counting on her becoming our regular point of contact. We have been in limbo with this for the last four years. Before that we were under Roger Jenkins who was thorough and reliable. We saw him every three to four months which gave us the opportunity to discuss all of the changes and concerns as they came up. When he left the post we were reassigned to another paediatrician but she has been off so much we have had on average one appointment a year and not necessarily with the same consultant. Mostly we manage fine but it is far from ideal and puts all the responsibility onto us to manage everything to do with Rosa's care, medically as well as physically. We are capable but it makes life more stressful. We are the only point that ties all of the many professionals involved in Rosa's wellbeing together. We have everything crossed that we will achieve some consistency with this Dr. but time will tell. We both feel we may be entering a new phase which will bring new challenges as Rosa becomes a young woman. A good and consistant consultant would make us feel supported as we navigate the next chapter.
Speaking of friends we also caught up with dear Rita and her family at tennis on Saturday and had a lovely time despite Rosa feeling a bit spaced and out of sorts. The tennis club is good fun with a real mix of children with different abilities, we hope to go more in the future. It's also a great opportunity for Rosa and Rita to get together. Rosa and Rita's is the original heart bursting friendship, we do our best to get them together and Skype as often as we can.
There is more news, there are always more appointments and fun, ice skating and the hand clinic tomorrow for example. We muddle our way through and I'll try and keep you posted x
12th Feb 2020
A fitting for my new made to measure wheelchair today. It's looking good! I was super relaxed and comfy in it. We're keeping the same @hoggi.kids base as it's pretty awesome, especially as Daddy has got big off road tyres to fit it. But I've grown and changed shape a lot in the last 18 months so my seat isn't the right shape for me anymore. We chose colours and chatted about headrests and footplates while I tested the foam mould. I'm very happy with it, thanks @ottobock_uk and thank you NHS this chair would be unaffordable if we had to pay 🙏
13th Feb 2020 I have just finished reading What I Would Tell You by Julie Keon. I recognise so much that resonates to my core within its pages, I cried every night as I read it but that felt like a release, it was a spot on recognition of a very particular joy and pain that is ever present and all encompassing in our lives. Rosa related tears are always happy even while they are the saddest tears there are. It also reminded me to be so grateful, grateful that Rosa sleeps, that Rosa's seizures are still infrequent, that Rosa is quick to smile, to laugh to express her lifeforce to anyone who has the time to properly engage with her. I would recommend this book to anyone who would like to feel how it is to stand where we do. I know I will return to it again and again. I would also recommend Julie Keon's facebook page, What I would Tell You. She is a most inspiring and thought provoking writer.
20th Fbruary 2020
Rosa's latest Instagram post...I seem to be writing it in the first person...not sure why or how sustainable it is but that's how it's coming out at the mo!
My amazing teacher from #curnowlowerschool came to visit today with her funny dog Dennis.
It was so lovely to see her and share our news. She was my teacher for 5-6 years and I do miss her.
We have been on a long and wonderful learning journey together at school. She saw so much potential in me helped me to discover ways of communicating that changed and opened my world. With her brilliant team she provided a secure and fun environment in which my friends and I are able to shine as brightly as we deserve to.
I continue to thrive at Curnow. Now I'm year 7, I'm at upper school which is also pretty awesome and with another wonderful team. Plenty more learning adventures to come but my time with Jenny will always be very special x
24th Feb 2020
Holidays are vital and fun but can be challenging too. Everything is different, some of it is good different, I love that we're all together in one place, no-one has anywhere else to be. I love playing games and listening to music, dancing and telling jokes. Some of it is more difficult, there tends to be quite a lot of time in the car and because I'm not at home I don't have my usual routines. Today it was stormy outside and Ive got a cold so I stayed warm and cosy in my pyjamas all day and didn't go anywhere! Some of my favourite holiday days are just that. Staying in one place with my favourite people 🧡
28th Feb 2020
Yesterday we met up dear Helen Dickerson, she was portage worker to our family in the first few years. She was a brilliant advocate and became a true friend.
It is always a treat to catch up with her. There have been several really fundamental people on this journey and Helen is definitely one of them.
She helped us all find our way and build confidence in those first few years. She helped us to have faith in our own judgement and find our own path in a world where nothing was as we had expected it to be.
19th March 2020
Here is Rosa's latest insta post...So my family decided to start social distancing last Friday. Like many PMLD kids I am very susceptible to chest infections and pneumonia and most of my hospital stays over the years have been because of this vulnerability. I love school and they are brilliant there so I will miss it. That's where I access all my therapists who help me both physically and mentally, we won't see anyone for a while now so my family will try to give me everything I need at home. Luckily my new wheelchair arrived before all this happened and I am much more comfortable, I am actually very happy and healthy at the moment. I love it so much when we're all together at home. This is my brother doing his maths, he is serious because he's concentrating and it's quite hard but I like counting and numbers a lot, I think it's funny.
We're two weeks into our isolation. I love being at home with my family, we've been spending loads of time in the garden.The weather has been sunny and we've been on the trampoline and playing swingball quite a lot.
School have sent some activities to do and my family have been doing loads of counting and maths for me too as I think it's funny.
I had an official letter this week to say I'm high risk. We already knew this which is why we haven't been anywhere or seen anyone for 2 weeks! We're hoping the letter might mean it is a bit easier to get supplies brought to us.
A friend has been bringing some shopping round when she can and we have managed to get the supermarket to deliver once as well. Our regular @riverford box has still been coming for which makes my parents so happy! And we've been having fun foraging in the garden and the freezer! Nettle and ransom soup was a garden highlight and last Autumn's apple sauce has been the best thing from the freezer, we've had loads of cake! We are still eating healthy delicious food every day.
I have all my food pureed so that it can go straight into my tummy through my peg, I have a really small tummy so what goes in needs to really count. I eat lots of raw fruit and veg which is fortified with nuts and oils and high calorie formula which I get on prescription.
We started stocking up on prescriptions when Brexit was big news and so do now have a small buffer, which is good news as we've heard prescriptions can be really tricky to get at the moment.
I've been having some unusual seizure activity over the last few days, this makes me feel really tired and spaced out. We're really not sure why but it's been a bit scary. There is so little known about epilepsy, and it's especially hard to know what is going on with unusual brains like mine. My parents have chosen not to put me on regular medication as my seizures have always been infrequent. This new activity seems to be coming much more regularly although it is less dramatic than previous seizures. They are keeping an even closer eye on me than usual! At least we know it can't be because I'm coming down with something because I haven't seen anyone!
I am being very well taken care of in this strange new life. I hope you feel taken care of too.
4th May 2020
Hello everyone, I've been a bit quiet as I've been a bit poorly. Lots of rubbish seizures but I'm feeling much better and getting excited about my birthday coming up! I'm going to be 12 on May the 13th, so excited! 12 whole years of fun and adventure! Of course this calls for a big celebration and ordinarily I'd be having a great big party, maybe with a bouncy castle...🤩 and definitely a crockery shy🏺💥😂
Right now that isn't possible but we will still be having a massive celebration in our house with just the four of us and Bridie dog all making a huge noise! If you want to help me celebrate we will be having a virtual crockery shy, please send me videos of you smashing things on or before my birthday as it is awesome fun and also very therapeutic my Mum and Dad tell me!
😘❤️🧡💛💚💙💜
13 May 2020
Our girl celebrated 12 times around the sun today, what an utterly special day.
She is astounding, beautiful and so inspiring.
Thanks to everyone for your hilarious and imaginative videos, they were very much enjoyed and will continue to be appreciated for a long time to come.
Rosa's birthday was gorgeous, thank you all so so much for the thoughtful and imaginative videos that you sent, we will definately watch those again and again!
Inevitably the day was tinged with some sadness and worry, Rosa's Birthday is always milestone for the whole family. A marker, we are never able to banish the knowledge of her prognosis, we are counting up while inevitably counting down. This year was a particular marker. Her new seizure activity over the last few months has increased to a level that we don't feel comfortable managing without medication. We made the decision the day after her birthday to start regular daily epilepsy medication. This is something we have safely been able to manage without until this point but we have always tried to let Rosa guide us when it comes to decisions about her health and welfare and these episodes were exhausting her. She didn't seem to fully recover for days, perhaps she may even have been managing some low level activity almost constantly for the last few months.
So that was quite a biggy! She has been on the new meds at a very low level for a week now and we have only seen one episode which was a mild one, we will very gently increase the meds. over a number of weeks and see how she goes. First impressions seem positive though, fingers crossed...
So in reponse to all that and everyones general fatigue with the ongoing captivity we decided to hold a virtual festival in our garden this weekend. It was perfect. We never forget how important it is to have things to look forward to in life. At this time its been one of the hardest things, not knowing what the future holds and not being able to plan those positive focal points to hold onto. So we created one, without leaving our garden we all feel like we have been on holiday (actually less work than going away too!
So, refreshed we go on, strong, together and in love xxx
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