Updates

A year ago today....July 2013


It is so hard to believe a year has passed since Evie first heard sounds!  Evie just loves her new "ear" and puts her processor back on before we've even noticed if it slips off during play.  We are currently at The John Tracy Clinic in Los Angeles at their auditory verbal therapy summer programme.  I arrived nearly three weeks ago with Evie and my mum, David and the rest of the children arrived last Saturday.  What a place - not just LA but the John Tracy Clinic, the children have learnt so much in their "sibling" group, all about Evie's deafness, causes of deafness, how they can help her, what technology is available, their role and also how important each one is as a part of this family.

The adult group is described as a mini masters degree with in depth analysis of auditory processes, language, speech development, education and support.  It's a full-on course designed to educate parents so that they can not only help their children but also make informed decisions about their education and development. I started the course with three questions I wanted answers to and I have found those answers as follows:

1.  Does Evie have enough access to sound to enable speech and can she discriminate between sounds or are they all the same to her?  ANSWER:  Evie's audiograms show that she can hear pure tones (bleeps) at around 40DB (normal voice) but responds to voice levels at 30DB (loud whisper) this is across all frequencies so low sounds and high sounds.  She had begun to discriminate between sounds so can pick out the right object or picture on sound alone.  The answer is therefore "yes".

2. Can we just rely on an auditory approach with Evie or will she also need signing?  ANSWER:  We took the time to visit House Ear Institute in Los Angeles whilst here as they have extensive experience with children with ABI's.  We also spoke with other parents whose children have ABI's and experienced educational specialists.  The general consensus is that children with ABI's will also need some visual stimulus or clue to be able to understand and use speech whether by sign language, cued speech, lip reading or just gestures.  We want to give Evie every access to language and therefore will continue with her British Sign Language so as to enrich her learning.  This is great as it means Evie will be bilingual with spoken and sign, what a great skill to have!

3.  Are we wanting Evie to learn to speak for her or for us?  ANSWER: If you could see the smile on Evie's face when she recognises a familiar tune to a programme on iPad or see her dance when she hears music, or see the way her face lights up when she says "moo" on seeing a cow or "more" for chocolate it is so clear that not only does she tolerate sounds, she absolutely loves them.  Speech is a natural part of that hearing, we are not going to pressure her to talk but we will do all we can to encourage her to communicate, however that may be and at her pace.  It is exciting to watch her develop her listening skills, tonight she pointed to the sky and signed plane as she heard it but it was obscured by the clouds so she signed "where?" When the sound died away she signed "all gone"   how wonderful that she can hear those sounds AND communicate what she heard - what an amazing place we find ourselves in 12 months on, and it's thanks to everyone that has supported us over the last year, you all know who you are! 

Sister Act - April 2013

Without us knowing, Amelia who is 12, produced this beautiful montage of her sister Evie 

http://youtu.be/Xg8pxJD-uaI

The music is a song written and performed by my brother Rex Allchurch.  We were so moved by her little video that we wanted to share it with everyone!

We are so very grateful to all who have given time and money to help our little girl to hear.  We are still a little way off our target but have now paid for her operation which is fantastic, thank you all.  The money we are now raising is for her ongoing "tuning" of the device and speech therapy which costs around £7,000 per year without taking into account any travel costs.  We will continue to pursue funding from the NHS but as of yet all of our requests have been refused, even down to things like her batteries (her processor takes 3 small hearing aid batteries that last 2-3 days) and leads which all require regular changes! There is a centre in Manchester that could do Evie's tuning but we do not have NHS funding for this yet - the team there are ready and willing to work with Evie so our long term plan is for Evie to be seen regularly there.  In the meantime we are ping ponging between Italy and Manchester - Evie knows the safety card on the planes off by heart and always signs to me "where is the slide?" when she looks out of the window as she can see there is one on the safety card.  At just 10 months she has flown 16 times, definitely a frequent flyer!

Thank you for following our story - Evie is hearing a huge range of sounds, the operation was incredibly successful and with a few years of speech therapy and tuning there is every hope that she will be talking and listening the same as her peers, thank you.


Green Shoots - March 2013

We are well overdue an update for which I apologise.  

Evie undergoes Auditory Verbal therapy at AVUK in Oxford every two weeks, we have seen significant progress during her sessions and Evie really seems to understand the concept of making a sound for something to happen - the next stage is forming those sounds to make words.

We received the fantastic news at the end of last year from AVUK that Evie's speech development was the equivalent of a 13 month old - given that she had only been hearing for under 5 months this was incredible news!  This was based on a whole range of criteria including her understanding of familiar phrases and her vocalisation.

We travelled to Manchester in February of this year for some more "mapping" (tuning of her device) but unfortunately the audiologist had to cancel our appointment.  As Evie's ABI is so rare there are very few people who can programme it and to our knowledge only one in the UK with experience of children's ABI's.  We were very disappointed but were able to use the time to test Evie's responses and draw up an audiogram.  This showed responses at 50DB which is speech levels - fantastic!

In March we travelled back to Italy and met up with two of the technicians from Medel (who design and produce Evie's equipment) and two audiologists.  They were extremely pleased with Evie's progress and confirmed that all 12 electrodes are working and that she is responding to a wide range of sounds.

Last week I was able to capture a couple of Evie's "hearing" moments - the first is Evie turning when I call her - she regularly turns now when called which is just so amazing to see.  We were told not to expect her to respond to speech levels for at least the first year so this is just fantastic!  

http://www.youtube.com/watch?v=dSed55RPN24

The second clip is Evie saying "more" for some chocolate! She says it so beautifully, I just cannot adequately put into words what a wonderful feeling it is to hear my little girl's voice - so many times I never thought I would.

http://www.youtube.com/watch?v=y_PMmgzecFI


So, it's been a busy couple of months with travel but Evie continues to surpass our expectations.  We are still very much in need of ongoing funds for Evie's speech therapy and are extremely grateful for the kind donations we continue to receive from such kind hearted people. 

 

 

2nd December 2012 – Update

It is hard to believe that another two months have passed by without an update - long overdue! We have once again been touched by the kindness and generosity shown to Evie by people who have heard of her fund and just want to help. Last month saw a craft fair in Mundham, a charity weekend at Butlins and a curry eve and in October there were car boot sales, cake sales and a fantastic evening of dancing and music in Durrington, near Worthing. Lots of people have asked how much we have now raised. Currently this is just over £37,000 but there has been a further £9,000 raised that we have not yet received. That is a phenomenal amount of money to have raised in such a short time and we will never tire of saying thank you to the wonderful people who have made that possible – THANK YOU!!

As the seasons have changed I am taken back to last year and the feelings I had then. I particularly remember sitting in Harrison’s carol concert – the music was heavenly as the choir entered the church by candlelight, it was so moving but in my depths I felt such a sense of loss thinking that my little girl would never be able to experience this. Tears ran down my face as I sat at the back of that church and I tried to focus on all the positives and how lucky we were in so many ways but as a mother I just wanted to give her that, even if only temporarily, I would gladly have given her my hearing if that were possible, (as would David). This year we are all going to the carol concert including Evie and I will cry for entirely different reasons – tears of gratitude and of happiness, as I watch my little girl hear that heavenly singing.

Evie is a lot more vocal than even a few weeks ago. There is now a noticeable difference in the morning pre and post putting on her processor. Evie is not able to sleep with her processor so there is a period of time in the morning when the external part is not in place and she therefore cannot hear anything at all. As soon as we place the processor in place the babbling starts. It used to be the case that I wouldn’t know if Evie was in a room as she was so quiet but now you can hear her humming and babbling away to herself as she plays – it’s so lovely to hear. Evie is quite musical in her noises and frequently copies the pitch of our words rather than the actual sound the word makes – this is new territory for us and to a large extent those working with her as it was previously believed that she would not be able to interpret pitch. Coming from a musical family, this literally is music to our ears!

Evie can now say “more” for food and two days ago started volunteering this without the need for a prompt! Evie says mumma a lot but seems to say it regardless of whether she wants me, I think she just enjoys making the sound. Another word she is trying out is “open” but as she is trying so hard to copy the shape of our mouths it sounds more like a kiss than a word but we know what she means! We have had to learn new skills ourselves with the way in which we teach Evie to listen – it doesn’t just come naturally, she really does have to learn this and we have to find ways to encourage her to turn on this new skill. Auditory Verbal UK in Oxford have been fantastic at teaching us with Evie, and The Elizabeth Foundation that Evie attends twice a week creates the perfect listening environment for her to learn. We are so very lucky to have these resources near to us.

Evie is due to have another mapping session early new year so I will try and update everyone then but in the meantime we would like to wish everyone a happy Christmas and a happy new year and thank you all for your support throughout 2012, we really, really, really appreciate it.


HAPPY BIRTHDAY EVIE!

Our little girl celebrated her second birthday on the 28th September:

Little Evie, it was two years ago today that I held you for the first time having carried you for nine months, we had no idea then just what an amazing little person you are and how much you would change our lives. We all love you to pieces and as I have said before, I know there will be mountains that you need to climb and sometimes you will meet with human ignorance and prejudice but I will always always be at your side and when you'll let me, I will carry you, my beautiful two year old. You've done so well, happy birthday and thank you for changing me for the better, love mummy xx

Last week we returned to Italy for her first mapping session.  Evie loved being back in Italy and wasn't at all upset about being back in the hospital, which was a great relief.  All twelve electrodes are still working and they increased the intensity on all of them, some by as much as double.  Evie is now consistently turning to her name being called as well as signing to let us know when she hears something new.  We are all so amazed at her progress.  Evie is having auditory verbal speech therapy with AVUK once every two weeks and is continuing to make excellent progress.  We are extremely fortunate that she also has a super teacher for the deaf who visits fortnightly, and her nursery, The Elizabeth Foundation, where Evie also sees a speech therapist every Monday.  We are seeing huge improvements in Evie's listening skills every day, it is just so very exciting!

Today we had a birthday celebration with friends in Steyning (Liz and Juliet) who hosted a garden party for hope for hearing.  A great turn out and some fantastic cakes!  Local businesses in Steyning donated some super raffle prizes and the lovely Benna McCartney played guitar and sang beautifully accompanied by her beat boxing son.  Evie had a stunning birthday cake made by a friend of Liz and Juliet's - Derek (thank you!). 

Going the Extra Mile - September 2012

Once again, we have been so moved with kindness.  Two weeks ago, Kevin Byrne, Managing Director from Check-a-Trade set himself the task of running a marathon against Check-a-Trade employees and tradesmen.  The day before he ran the marathon Sainsbury's staff at Chichester ran against Check-a-trade.  It was truly incredible to watch.  I was literally moved to tears watching Kevin in the final few miles, clearly in a lot of pain, pushing through and completing the marathon for our Evie (with a broken shoulder no less). We couldn't believe that someone that didn't know Evie was prepared to put himself through physical pain to raise money for her.  Truly an inspirational leader, the Check-a-trade staff were all up for the cause, having already raised money for Evie through work initiatives over the last couple of months.  Sainsbury's were all incredibly supportive and even presented little Evie with a dress and me with some beautiful flowers at the end (I didn't do anything to deserve those).  We don't yet know the total raised but we are truly overwhelmed!

To see Kevin and Evie follow this link for his video diary, it is a brilliant piece:

http://www.youtube.com/watch?v=lwljFufFOpc&sns=em

Evie had her first "proper" session at AVUK (speech therapy) in Oxford.  It went well with Evie responding to "bye bye" and waving (without us waving) and pointing to the door when she heard a knock.  Evie also attends The Elizabeth Foundation in Portsmouth which is a specialist nursery for deaf children,  and has thoroughly enjoyed interacting with the musical activities!  We have had a few problems with her processor but we are travelling back to Italy for a few days at the end of this week to see the technicians out there so hopefully all will be resolved. 

I keep having to pinch myself when I see Evie respond.  We were recently interviewed on the local BBC (I will post a link) and I said that my heart jumped everytime she responds to a sound, that is so true.  I am so used to her not reacting to sounds that when she clearly does I just can't quite believe my eyes.  I am so encouraged by her progress and just know that with the right help now, there is absolutely no stopping our little Evie.

As we approach Evie's second birthday I am moved by a quote from Peter Kuzmic:

"Hope is the ability to hear the music of the future.  Faith is the courage to dance to it in the present" and dance we all do...Pv 

Beyond Words - August 2012

I have struggled to write this update.  How do I put into words the feeling I get when I see my little girl hear a sound she has never heard before? Or how I feel when she laughs at a sound she finds funny.  Or how I feel when I see the intense concentration on her face as she plays over and over again with a toy that makes a noise - that same toy that I couldn't bear to watch her play with before as it meant nothing to her.  Or how proud I feel when she stands on the pew next to me at Blendworth and tries to sing along to the hymns.  Or how my heart swells when I check on her in the mornings, still sleeping peacefully long after the others have woken, shattered from her new learning every day.  Or how my heart skips a beat when she makes her own sounds.  Words just do not suffice.  I am amazed, enthralled, intrigued, blessed, and humbled by our little Evie.

And how do I put into words the incredible gratitude that we feel to so many people who have helped make this a possibility.  People who have made personal sacrifices for our baby.  Gavin Dutton who shaved all of his hair to raise money, Kevin Byrne who has stood for hours on end with his Olympic Torch raising money and who this weekend will run two marathons on a treadmill, Richard Howell who at 74 years of age played 110 holes of golf to raise money, Hairways in Rustington putting on a fun day, the cyclists who are going to cycle through France in October for Evie and the countless people in local businesses who have helped and are going to help, you know who you are.  Those people who have donated through the website and sent cheques in the post, people who have made cakes, carried out Zumbathons, put on shows, raised money through their work and those tireless angels who have held us in their prayers and thoughts over the last three months.  Our wonderful friends and family who have given not only their financial support but also their time.   We are privileged to have walked this journey with all of you, what amazing hearts you have. 

I have posted a clip on YouTube of Evie saying "mumma" it really is a magical moment and I am so trhilled I caught it on camera.  I am not certain she knows I am "mumma" (although the others are adamant she does) but it is clear she is enjoying the sounds she is now able to hear herself making!

http://www.youtube.com/watch?v=bca6sP70DvI&feature=youtube_gdata_player

We attended at Auditory Verbal UK in Oxford just over two weeks ago for an initial assessment.  I was so impressed with their outlook and presentation and within a short time Evie was visibly responding to sounds and making quite a few of her own.  I have the DVD of the session and I am just trying to work out how to lift a few clips from it to post on here as they really are remarkable!  The aim with Evie now is to get her to understand that noise "means" something.  Evie clearly enjoys sounds but to her they don't actually have any meaning.  We need to show her that by making a sound something happens - ie if she makes a sound the toy responds, and also that sounds have meaning, ie a doorbell means someone is at the door!  It is so much more than speech therapy and we are really pleased that they have accepted Evie onto their fortnightly schedule.  This will begin in September and we are paying for this from the money we are raising for Evie.

So that is all for now folks, I hope to be able to post video clips shortly and thank you all for looking at these updates and continuing your support for us and Evie.

Saturday 28th July


Evie continues to amaze us with her hearing, responding to clapping, motorbikes and music!  We received her activation report today which confirms that all 12 electrodes are working and she is responding to sounds at low to mid frequency as well as high - as low as 500Hz which means she is able to hear at speech levels - this is truly remarkable! It's just so wonderful to see, thank you so much everyone for making this happen!

 

The link to Evie's video of switch on is  

http://www.youtube.com/watch?v=iJCk64wrIqI&feature=youtube_gdata_player

 

 

Wednesday lunchtime


Evie is switched on!! She had fantastic clear responses to sounds which was well beyond our wildest expectations! All twelve electrodes are working and seven of them responded at low levels which is amazing - that's a brilliant indicator that she will hear speech.  Totally overwhelmed, I walked up that same walkway as we walked up the day we got here a little under 6 weeks ago - I had the same butterflies but no fear this time just a sense of knowledge that whatever happened we had done our very best for Evie.  To see her little head turn to noise was absolutely breathtaking, the most incredible thing I had ever witnessed and it's thanks to everyone out there who has made this a possibility.  

 

I will post a video on YouTube later when we are in Wifi!

Tuesday 24th July

So the good news is that Evie's test results were "very good" but the bad news is the switch on is now going to be tomorrow morning instead of today.  I had a feeling this may happen as the dates are very often moved last minute but it was still a bit of a let down as we were told after the tests that it would be 2pm today.  We then received a phone call to say it was going to be in the morning instead with no explanation.  At least this way Evie will have had a good breakfast before they activate her - she was none too impressed at nil by mouth again this morning! I will update tomorrow.  


Monday 23rd July


Still in hospital with poor Harrison although it is shrinking which is good, we are waiting for another ultrasound today in the hope they will discharge him with oral antibiotics.  

SWITCH ON IS TOMORROW! We need to arrive at 8am with Evie nil by mouth from the evening before.  They will then do a CT scan under sedation and a further EABR - these tests will show them firstly that the swelling has gone down and secondly that the brain is responding to electrical stimulation.  As long as they are happy with those results we will return in the afternoon for her switch on and Evie will hear for the first time! Wow!


Friday 20th July


Unbelievably we are back in hospital again! This time for Harrison.  We thought we would drive to Venice yesterday as a treat for my birthday.  Its only an hour's drive so we set off with a picnic lunch and high hopes.  About 30 minutes into the journey Harrison was clearly in a lot of pain, clutching his abdomen and saying he felt hot and sick.  It was clear something was really wrong so we turned around and sped back to the hospital.  By the time we got back he said he felt better but we thought we should get it checked out anyway.  They were very thorough and although his blood tests were clear the ultrasound revealed some debris from his appendectomy last month.  They have therefore admitted him with IV antibiotics for 48 hours and then a further ultrasound.  If it doesn't clear then they want to do further surgery to remove the debris (it's about 2cm x 2cm).  So, back in hospital again!  

 

Evie is still doing really well, the scar is healing nicely and her activation date is now confirmed for Tuesday 24th.  Harrison said last night that all the bad stuff was happening now so it would be really good for when Evie has her switch on! 

 

Thursday 12th July

Evie has had to have daily antibiotics which are administered intramuscularly - these are very painful and she now shakes when we take her into the nurses room to have them done.  Happily these came to an end today when Evie's bandage was removed and the stitches were taken out.  Evie was under sedation for this and I wasn't allowed to go with her so I wasn't able to see how well the scar is healing but they said it was all fine.  She has large wadding taped to the right side to cover the wound which doesn't appear to bother her which is great.  Harrison came out to join us on Tuesday and she has loved showing off to her big brother, especially playing with him in the large park opposite the apartment.  David is flying back with Amelia, Matthew and Edward on Saturday so the whole family will be reunited again after nearly a month.  The apartment is only one bedroom so we will have to take it in turn to sleep in a nearby hotel with two of the children while the others stay at the apartment.  There are quite a few large theme park type places nearby so next week should be lots of fun which will be just what the doctor ordered for this family!  Switch on is still set for next Monday - I am trying not to become focused on that date as they nearly always change the dates and times for no apparent reason so it may well not be the Monday! 

I just also want to say a big thank you to all of you who have emailed, texted and facebooked messages of support, this has been by far the most difficult thing any of us have faced and it has been such a comfort knowing so many people are supportive of us.  THANK YOU!

 

Friday 6th July


We are out and David is back!  Finally we were all discharged today.  We were given results of the EABR tests that they had under sedation - Evie has 10 out of her 12 electrodes working and 2 out of 3 peaks were showing.  I have no idea what this means but we were assured that this was very good.  They only need 4 electrodes to work to be able to hear so this is just fantastic news!  They said this is just the departure point not the arrival and that even by the time the device is switched on this may increase to 12 electrodes.

We are all just so happy to be out of the hospital.  We need to return for a couple of days for intramuscular antibiotics (in her little bottom) and all things being well they will remove her stitches on Wednesday and hopefully keep the bandages off as it is very hot for her with them on! The temperature here hasn't been below 28' and that is in the evening!


Wednesday 4th July


It has been just wonderful having Jo here, we were so sad went she went this lunchtime.  We managed to sneak out of the hospital to enjoy some time being "normal" but I did get a telling off by the hospital on our return - like being a naughty school girl but it was so worth it to think of something other than hospital vending machines!

They took bloods this morning and said that as long as they are all clear we can be discharged tomorrow - hooray!


Monday 2nd July


Evie bandage second bandage change - it was horrible.  The scar looks horrendous - between 6-8" in length and sewn together like a Frankenstein horror costume.  To make it harder, she cried her eyes out and I had to restrain her while 4 of them put the new one on.  I returned to the ward and just wanted to cry my eyes out, I felt so alone.  I put Evie in the pram and just walked out of the hospital back to the apartment with her.  She soon cheered up when we got back here and I realised just how difficult we are both finding being on the ward 24/7, it feels like we are on an episode of Big Brother.  The day is broken up by little walks around the hospital corridors visiting the different vending machines. I recently spotted a decaf cappuccino in one of the machines and had to restrain myself from buying it and save it for a treat later in the day so I would have something to look forward to - how sad is that?!

The cavalry is arriving later today in the form of my very good friend Jo, Evie's Godmother - I cannot wait to see her.  I had hoped we would be out of the hospital by now but doesn't look like it, so Jo will stay in the apartment on her own but we can show her the vending machines during the day!


Sunday 1st July

Evie now has no "strings"! Yippee!  Her cannula has been removed so she can now roam around the ward again.  She is still quite wobbly on her feet and I think it scares her that her balance isn't where she thought it was.  As she has no balance nerves anyway, I think she is such a star to get up on her feet and try - such a determined little thing.

David flew back to London today to help mum with the other children - Harrison ended up in hospital the day after we left for Italy with appendicitis and had surgery that afternoon.  It was awful knowing he needed me and I was miles and miles away unable to help.  My mum was amazing and Harrison phoned me before they took him down and again as soon as he woke.  Then Amelia ended up in hospital a few days later having contracted a particularly nasty form of impetigo in a school trip!  My poor mum ended up looking after both of them whilst they were off school but she was an absolute gem and didn't grumble once!

 


Thursday 28th June


We met with Colletti on the Tuesday morning following surgery. He confirmed that it had all gone very well and that they had seen results from nearly all her electrodes which is just fantastic news! Evie came out of ICU as she was able to breathe on her own and her CT scan was all clear.  The first thing she did was to cry then look at me and point to her head and sign Mummy.  Heart wrenching.  The next two days were spent holding her pretty much day and night with IV antibiotics, cortisone, pain killers and glucose.  She wouldn't sleep for more than 40 minutes and on the rare occasions that she stopped crying she would just look at us with such a pained expression.  Not even a hint of a smile and I kept thinking back to the Sunday before the op when she was happily carrying around her baby doll and drinking chocolate milk. Today started off much the same.  Evie went down for another CT scan under sedation and a bandage change - all good.  At around 4pm we got our first smile and when tea came at 7pm she was sat up and grabbed the spoon from me to feed herself! Lots more smiles and a few chuckles which has just made my day.  I am so pleased to see that beautiful little smile back on her little face!


Monday 25th June


We were woken at 6.15 by the nurses who came to get the little boy next to Evie, they said they would be back for Evie in just 15 minutes.  I sent David a text message saying to get here quick (the apartment is just opposite the hospital).  I hadn't slept much and Evie had been really unsettled.  She was upset when they shaved her head the night before and kept putting her hand up and rubbing the stubble.  David arrived in minutes.  They didn't come back for us until just after 9 which was quite tough as Evie kept signing "milk" "food" "biscuit" "cake" "drink" everything she could think of to tell us she was hungry and thirsty. We were then taken down to the theatre level.  The nurse put cream and plasters on the areas where they would be putting needles (so many of them) and said to us "she is still so beautiful even with no hair". Then they gave her a liquid sedative which she refused to drink, I managed to get half into her and they left us for a few minutes and Evie became cuddly as the sedative kicked in.  Then a man came out and we handed her over.  He just walked off round the corner leaving us standing there with nothing but the image of Evie with a slightly quizzical look.  We both just held each other and sobbed.  For the millionth time in the last few days we asked ourselves what on earth we were doing. 

The next few hours were the longest of our lives.  At 4.30 Professor Carner came and found us, he gave us a reassuring smile and said she was in ICU.  I couldn't get there quick enough.  I was just so pleased to see her even with all the tubes and bandages, she still looked like Evie (I don't know what I was expecting).  We sat with her until 10pm when they took her for a CT scan to check there was no bleeding.  The results came back at 10.45 that everything was normal - phew! They said they would keep her sedated all night and we were to come back at 7am the next day so they can bring her round.  

The surgery went well, the implant went in "perfectly" there were no complications and they got good "potential" from the electrode testing.  I am enormously proud of my little Evie, so brave. 

 


Sunday 24th June

Tomorrow morning at 7am we will hand over our beautiful little baby to a team of surgeons.  If you had told me at the end of last year, before we had her diagnosis that in just six months we would fly to another country, leaving behind our other children and entrust a group of Italian professors to carry out brain surgery on our little Evie, I would never have believed you. It seems surreal that we are at this point and that we have had to make such massive decisions in such a relatively short space of time.  I sat watching Evie playing with David this morning and for the first time I allowed myself to imagine her saying Mummy to me.  I haven't dared to do that but today I allowed myself that hope as without it I think I would snatch her up in my arms and run, run, run.

Evie  has been truly fantastic with all the injections, tests, and prodding.  Today she will be having her head completely shaved.  It will be tough, not because of her losing her hair but because of the imminence of the surgery tomorrow.
 
Thank you to everyone who has shown us support, we know that the next few days will be the hardest yet but we also know that we are not alone.
 
 
 

Sunday 17th June

Haircuts, Harmony and HopeB

There have been so many moments this weekend that have brought me close to tears.  Having Evie's beautiful curls cut off in preparation for her op (I wanted to keep them rather than have them swept up with medical waste and wanted to prepare the others for when she has her head shaved) she still looks beautiful and still just as smiley. Hearing Ben sing Fix You at the Talent Show in Selsey last night - beautiful and just as moving was Harrison (my eldest) coming to find me as he sensed the words had meaning for Evie and he wanted to ensure I was ok. And then today, Edward (8) saying goodbye to Evie for the last time before her op, lent into the car, kissed his little sister on the forehead and whispered "I hope you get hearing". 
 
I cannot put into words how I feel other than to say thank you everyone for all your support and prayers, please keep it coming!  We have now raised over £26,000!! This weekend we have received £200 from the customers at Hairways in Rustington, £600 from the Talent Show, £750 from the Rotary Club, £500 from our lovely local church Holy Trinity Blendworth and £100 from the residents at Brookside Close Horndean - you are all wonderful!
 
 

Saturday 9th June:

It has been an emotional week in the Small household.  We have been so completely overwhelmed by people's kindness and the wonderful letters we have had in support of what we are doing.  The cheques have continued to arrive and the paypal donations, both David and I have been in tears at the kindness being shown to little Evie.  A lot of people have come up with ideas for sponsorship and fundraising.  Today we had a "Coffee, Cakes and Cream Tea" in Selsey accompanied by music from CakeShop (Gel Allchurch and Rachel Morris).  Cup cakes were donated by Truly Cocos (www.trulycocos.co.uk) and cakes were baked by lots of other local people.  We raised £500 in just one morning, bringing the total fund to just over £18,000!  Everyone who met Evie was very taken with her and she happily wandered inbetween tables helping herself to scones with cream and jam!  A special thank you to Grandma and Grandad Allchurch, Rachel Morris, Robin and Sue, Raquel, Judy, Andy and Angela, Adrian and Tracey Neal at Truly Cocos and the other lovely ladies who helped out.  You are truly wonderful people, thank you!

 

 

 

Sunday 3rd June:

A fantastic day at Fontwell Races promoted by the lovely Mandy Austen, Events Manager.  We raised a MASSIVE £1633 in buckets thanks to The Owen Kenny girls - especially Linda Dunn for rallying the troops: Rachel Rhodes, Penny Cawte, Jo Hall, Lauren Toop, Jenny Walker and her son, Laura Marsh and her brother Jack and Emma Royston who all turned up and collected money in buckets for Evie, as well as Auntie Carolyn, Uncle Mike, James, Paul, Grandma and Grandad Allchurch, Harrison, Matthew, Edward and Amelia.   With the fundraising to date it brings the total to just over £15,000! Thank you everyone!

Hope for Hearing, Evie Small Bionic Ear

Tuesday 29th May:

Evie and I appeared on BBC South Today tonight!  I cannot tell you how nervous I was but I just kept thinking "this is about Evie, not me" so just got on with it! It was such an experience to be interviewed on the iconic red sofa.  Sally Taylor and her team were lovely and asked me a lot about Evie and her condition before we went on air.  I had been told not to move as I was wired in so when Evie decided to take a wander behind the sofa I had to stop myself from being mummy and leaning over to pick her up!  Evie was a little poppet and as soon as she spotted herself on camera she did a little twirl.  I hope that I was clear in what I said, they asked me not to use any technical language which is pretty tricky when you are discussing brain surgery, but they said they were really happy with how the interview went.  As it is BBC you are not allowed to promote any charity or website so I couldn't give any details about Hope for Hearing but they did assure us that they would forward any enquiries.  If you missed it and would like to see it please click on the link below:

http://www.youtube.com/watch?v=uEkQ4HEG488&feature=youtube_gdata_player

Sunday 27th May:

Evie's story appeared in the Sunday Mirror today on page 35.  We have had an amazing response from readers with one reader generously donating £1,000!  Quite incredible and so humbling.  There are some really kind people out there, thank you if you are one of them!  I will be shortly posting an events page so that we can list the fundraising events coming soon which include a cycle race, talent shows, wine evenings to name a few.  Next Sunday (3rd June) at Fontwell the 4th race is Hope for Hearing - Evie's Race and Fontwell have kindly agreed for us to have a bucket collection which will be great.  Our children's schools are also looking at ways they can involve the children for fundraising and our eldest has entered himself for the Great South Run (the shorter one!).  THANK YOU!
CLICK HERE TO READ THE ARTICLE IN THE SUNDAY MIRROR

Thursday 17th May:

We have received confirmation by email from Verona Hospital.  Evie is booked in to hospital at 8am on the 21st June so we will need to leave England on the 20th.  We can't book return flights as we won't know how long we will need to stay in hospital.  A lot depends on how quickly Evie's body recovers from the surgery.  I am hoping that we will be able to return a week after the surgery but I have heard that it can be as much as 2-4 weeks.  That will be tough on the other children but thankfully we live in an age of Skype.

I came across a blog for a little girl in America who had the surgery in Verona in February (ameliaisamazing).  I have sobbed my way through the entries - huge tears of joy when reading that within 24 hours of activation she turned to the sound of keys jingling, and that now, just 2 months after activation, she is copying the sounds of her toys.  Really is just too much to hope for.  Reading about the surgery has had me unable to sleep and seeing pictures of their little girl with her hair all shaved and then later with her head all bandaged eating ice cream has just broken me.  Making the decision to proceed was incredibly tough, pushing our way through to eventually meet with Colletti has been tough, raising the funds that we need will also be tough but without a doubt, the toughest part of all of this is yet to come.  I have no idea how we will endure the hours while she is in surgery but I thank God for our wonderful friends and family who have shown us such support. 

Tuesday 15th May:

Just spoken with Professor Carner, the head of ENT in Verona - Evie is booked in for the surgery on the 25/26th June.  We need to arrive 3-4 days before the surgery and he is sending me details of a B&B opposite the hospital as only one of us can stay with her in the hospital overnight.  He is also going to send me details of the costs by Friday.  I need to send them her ECG and some blood results which hopefully QA can supply me with.  It is really going to happen.

Monday 14th May:

Wow, I am totally amazed at people's donations, people who have never met Evie or us, people that were part of my childhood, clients, parents of our children's friends, our family and friends, friends of our parents, the list goes on! And the generosity is mind blowing, I simply cannot put into words how touched we are that people care so much for our little girl. Every person that has given should know that when she first starts to hear sounds they have helped achieve that. They have bought Evie a little piece of her hearing. What an amazing gift to give. THANKYOU! 

Sunday 13th May:

I posted some time before on facebook about hope and how human nature seems to take even the smallest grain of hope and hold onto it so tightly until it grows and grows. The last 19 months I have had so many hospital and doctor appointments with Evie and at the majority of these consultations I have walked in with my nugget of hope on display and walked out with just the tiniest sliver - sometimes it has been so small that is has taken me a few days to find it again. But it does grow and even the slimmest chance of giving Evie hearing has kept me questioning and digging and fighting and pushing. So yesterday, I walked into Professor Colletti's office with my nugget once again held out but fearing we would walk out stripped of it and instead he spoke in the positive - one of the first things he said was "I will be operating on the right side...." I had to stop him and just blurt out - "so you can help her then?" he replied with "of course!"

I walked out feeling like I had been given the biggest slice of hope anyone had ever given me. It sounds daft I'm sure, especially as other parents are dealing with far worse scenarios every day, but for Evie, this will absolutely change her life.

So hope, it is one of the most precious things anyone can give another, it grows and holds on and takes root even in the most sceptical hearts. I will treasure this hope, thank you Professor Colletti.


http://www.youtube.com/watch?v=iJCk64wrIqI&feature=youtube_gdata_player

Evie