Happy Mother’s Day to all you mummies out there. Especially my mum as she is the BEST!!
By @enablingevie, Mar 30 2014 12:24PM
Here’s a message from her ....
Where do we start? Because this year so far has been so tough I decided to hijack Evie's blog. The new set of battles began at the end of last year, of course the fact that we are saying good bye to many of Evie's carers has been a constant stress and anxiety for the entire family and this week is their last week. I got very frustrated at the lack of communication and clarity between the powers that be and us as a family. So propelled by indignation, I contacted the local press who covered the storyhttp://www.yourlocalguardian.co.uk/news/11042000.Leading_children_s_charity_axes_outreach_support_service_for_disabled_youngsters/
At Christmas I had one of the scariest experiences probably in my life so far, worse than waiting for Evie to be hooked up to chemo, worse than waiting for the results of her eye checks, on par with her birth..... The week before Christmas I watched helplessly as Evie experienced her first massive seizure since birth. I dialled 999 instantly but watching Evie take what I thought were her last panting breaths was so surreal and shocking I lost all ability to think clearly. Evie had her seizures for nearly an hour. There were terrifying discussions of inducing a coma and the same response and questions greeted us in A&E....she has a brain injury, yes, and cancer, yes, cancer? Yes, where? In her eyes..... Umm. Oh is it terminal... Boom and there it is... The question everyone thinks but never asks unless they have to. No its not terminal, the nature of the eye is that it's trapped in there, unless it grows forward out the eye or backwards down the optic nerve, then we have problems.
I won't rant on here about the mistakes and unprofessionalism that followed instead I will thank the amazing nurse Berni, who reassured, supported and most of all listened and took on board the fact that I do I fact know my child as if she were me.
I know Evie’s nap lasts 27mins, I know her milk annoys her every night at 17:27 and she starts to complain. I know when she has a general anaesthetic she whips her head to the other side in protest 10 seconds before she drifts off, I know doing a lumber puncture whilst she's awake DOES NOT work, I know she hates her hands being grabbed, I know her temperature just by putting my lips on her temple, I know her weight just by giving her a naked cuddle, I know her every sound, every movement, every breath and if it's ok with you Dr as she is MY child I will say stop when you have attempted to put a needle in her more than 5 times because, actually she has had enough, and we can try again later...... Oops I said I wouldn't rant, that's it I promise!
Anyway Evie struggled for 7 days and nights we both had no sleep as I was hourly topping up her feed. Tests came back negative for everything and Evie battles on. In my opinion the seizure took 10% of Evie's strength and learning again. And it's only just coming back, along with her two year old attitude :)
Soooo we now have the added fear of a life dealing with epilepsy, but as they say cross that bridge...
Sadly the cancer in Evie's eye has continued to grow. Her right eye has remained stable but radiotherapy was unsuccessful, and we were recently told eye removal on the left was our only option. We refused and asked "what else?"
To help understand, Evie's right eye allows her peripheral vision, Evie's left allows her central vision. So without her left eye she can no longer see faces, books, or any detail about the world. We desperately need to shrink and kill the cancer in her left eye.
The plan is last Wednesday Evie had another dose of chemo injected into her eye up her artery. This will be repeated on 30th April with another chemo drug which is normally used on ovarian cancer, we will try anything. But the nature of the consistency of the vitreous jelly of the eye means the cancer is basically insulated so doesn't like to respond in the same way other cancers do.
Now onto the good stuff... Evie has her new specialised buggy and I have found a company that are wonderfully inclusive and make covers especially for them! Yay http://www.snunkie.co.uk/ so over the next few months 3x a day building up her tolerance, we will start her process to get mobile. Evie screams and startles if I even move the buggy over the carpet gripper on the door frame, so a kerb or pavement is a long way off! But with regular sessions and physio we will get there.
Evie has learnt how to hit a communication switch http://www.inclusive.co.uk/ablenet-bigmack-p2039 and has also worked out when to hit it to finish the end of a song.
We now go to a play group every Tuesday for an hour, we tried more but Evie decides to stop breathing these days when she’s too hot, too tired, has wind, numerous little surprises for her mummy :) at playgroup Evie recently held a brush and was able to watch and appreciate what she was doing whilst I helped move her hand to spread glue on her sensory board, she has been hand painting, discovering toys in trays of rice krispies, great fun http://mysmallpotatoes.com/2012/11/13/30-sensory-bin-activities-for-kids-a-small-potatoes-sensory-round-up/
Most if all she has been enjoying the fizz pod (little sensory room) which her wonderful portage workers have geared towards a jungle theme. A fully technological set up with a button alone triggering the bubble tube, a disco ball and the sound of a jungle rainstorm. I love it too as well as the love and understanding I get from Bev and Kay (they should be consulted for a national programme)
We have also introduced music therapy every Wednesday which Evie loves and so do I, all thanks to your donations! http://www.richmondmusictrust.org.uk/musictherapy
Also Evie now has her own area in the garden, wind spinners, chimes, solar lights, I have an empty shed waiting to be turned into a sensory room and a half put together arch for solar lights, jasmine to climb over it and wind spinners. http://www.52-lives.org/#!life17/c1eux
Also how could I not mention the wonderful day we had celebrating Evie's 2nd birthday at The London Aquarium, with thanks going to the charity Merlin’s magic wand that made it all possible. http://www.merlinsmagicwand.org/ the day was just perfect, mostly because Evie was such a good, strong brave girl.
Over the past few months Evie's fundraising has continued to lift us. Such generosity and kindness of friends, family and strangers. Evie even featured in The Metro newspaper as fundraiser of the day generating a massive amount of interest and around £300 in funds.
We have been able to hire the services of http://www.physiocomestoyou.co.uk/index.htm who are wonderful therapists and so very insightful. Here's hoping Evie goes from strength to strength.
Once again a massive thank you to everyone for your continued love and support, friends family and strangers x
Truly inspirational little girl and her loving family. Ashamed to feel miserable today...or indeed any day.
What an amazing woman you are Aimey. I hope we find all the help you need to create an amazing sensory room for Evie. xx