10th March 2008
Ellie Mae, came 3rd in the Sentinels (our local paper) Our Heroes Awards for the Child of Courage, and won the Signal Radio's Unsung Heroes Award for the Child of Courage.
Quite a lot has happened over the last couple of months. A year has passed since Ellie Mae was taken poorly, which was a very strange day, as we kept thinking back to what we were doing at that time last year.
Ellie Mae has celebrated her 2nd birthday in style, we had a Disney themed party for her and the guest of honour dressed up as Minnie Mouse, she looked beautiful.
19th May 2008
Ellie Mae will be going back into hospital this week. She had an operation on her wrist a few weeks ago to put an external fixator on. It has brought her wrist into a much better position and hopefully she will be able to use her hand a lot more now.
We had to turn the screws twice a day and thankfully that's done now, she hated it.
But fingers crossed it will be off on Thursday.
She hates us cleaning the pins, but it has to be done daily to stop the chance of infection setting in.
Other than that Ellie Mae is doing brilliantly at the moment, her speech mostly, she is coming out with new words everyday and copies what we say, we shortly will have no secrets at all!!!!!!
2nd January 2009
Happy New Year to you all.
Well what a year, Ellie Mae has come on so much, her speech is amazing, you can hold a conversation with her now, and she loves to sing and dance especially when she's got her microphone!!
Ellie had her fixator off her wrist at the beginning of June and within a couple of weeks her wrist was back in the same position. Her doctors had explored the idea of doing a muscle transplant, but the area where they took the muscle from would stop working then, so they thought it was best to leave it well alone, and she can still use her hand to feed herself, have a drink and draw, so she's doing ok.
The good news, we now don't have to go back and see her Consultant now until September '09. But we still have to go to Birmingham Childrens Hospital. We have been to see the plastic surgeons who are going to do her lip, but they want to wait until she's about 3 before they do it. Although we are slightly concerned that her teeth have started to fall out. Her dentist has told us that its just because of her being poorly and the teeth must have stopped growing when the infection took hold and damaged the nerves. But we wont know until she is 5 or 6 whether she will grow adult teeth.
As well as going to BCH, we have also been going to the Orthopedics Hospital in Oswestry. They are trying to build her a swivel walker, which would be amazing, it would get her up off the floor and upright. We were hoping that it would in time for christmas, but we've now been told the 13th January, so fingers crossed.
26th February 2009
We have now got Ellie Mae's Swivel Walker. It has been made to be height appropriate, which means they have made it so when Ellie is in it she would be around the same height as others her age. It was very surreal to see Ellie in it as we could never picture how tall she would have been.
It was a magical moment, when Ellie held her dads hand and walked her first steps in the kitchen. It will be one of the moments we will never forget. We have a video of this, if i can figure out how i put it on then i will.
The Swivel Walker uses the movement of her body to move, a bit like a pendulum of a clock. When she moves from side to side the foot plates at the bottom move forward. It is an amazing piece of technology, but there is a downside we have found, which is, we try and get Ellie to walk using her legs, whilst we hold her, which she is getting rather good at, but when she is in the walker she doesn't have to use her legs to walk, just her body, which is a bit conflicting, but we will persevere with it, as its worth it as Ellie loves the walker and being a lot taller!! When we knew she was getting her Walker, we stopped on the way home and bought her a kitchen, she loves it, although she does keep asking for water to put in her sink.....very messy!!!
We have been back to BCH, and they have agreed to do her lip. It has attached itself to her gum, so they are going to repair that, we are now just waiting for a date to go in.
We have also been seeing the Urologist, as Ellie at the moment has no idea when she either needs a wee or has had a wee, so they are doing lots of tests and the doctors has explained that in the worst case, she would have to have a catheter fitted permanently, but these tests are on going and I'll let you know when we do.
Another piece of bigs new....Ellie starts mainstream school fulltime in September!!!!!! She currently goes to nursery 2 morning a week, which she loves, but we have found her a school and she is starting there. The school has been fantastic with Ellie and is being very accommodating with her needs, and about the fact that she will have lots of time off for appointments. I cant wait to go and buy her uniform, it is all very exciting and Ellie looking forward to going to school everyday.
We have also just celebrated Ellie Mae's 3rd birthday!!!!! All she asked for was a party and a birthday cake, so what the lady asks for the lady gets!!!!!! Well actually her list was
the 1st 3 she got, the 4th were thinking about, the last 2, hmmmm definitely not the puppy ha ha ha
So this year there is lots to do, Ellie's lip, her starting school and when we go back to see her consultant in September we are going to ask for a referral to see the specialist about prosthetics, as she has improved so much and although the doctors don't hold out much hope of her ever walking we are far more optimistic. If he says no, then we will try and go private and see if there is someone who could help us. It would be worth every penny to see Ellie Mae walking with her own set of legs, so keep your fingers crossed......
We will let you know as soon as we do, and i will update the site as soon as more happens..
Ellie Mae has had her lip repaired at Birmingham Childrens hospital. The difference its made to her face is amazing, within a couple of hours of it being done she was sitting up in bed eating crisps, like nothing had happened, and was home the next day....anyone would think she'd done this before!
Ellie Mae has now started school fulltime, which she absolutely loves and looks amazing in her uniform. It was an emotional milestone, which we werent sure we would ever see.
The day was covered by Central News and our local newspaper The Sentinel. The day was only slightly overshadowed by the fact that Ellie was a bit poorly as the bone was pushing through her skin on her left leg, so she was in quite a bit of pain. But that was soon better a week later when she had another operation to remove 2cms of bone. This we think, will be an ongoing problem as the more she tries to weight bear through her legs the more it stimulates the bones to grow, hence the problems.
Ellie Mae now has silicone sleeves to wear to try and protect the ends of her legs, which she has to wear most of the time as she is now so active and constantly on the move. She hates to be still or in one place for too long.
We now have took delivery of Ellie Mae's electric wheel chair, courtesy of Permobile and Whizz Kids.
Im sure Ellie will have lots of fun getting used to driving it and we will have lots of crash sites around the house!
25th December 2009
Ellie Mae has had her very 1st car!
Not a real one, but a baby pink battery operated one, which her very clever Daddy and Uncle Lee, altered so it had a hand control insted of foot controls...have a look at the pictures...very cute!
After several months of waiting Ellie Mae's wheelchair is now all repaired and working. There have been problems with the controls, batteries etc etc, but now hopefully its all sorted, much to the annoyance of my feet which keep getting run over!
Ellie Mae is coming on in leaps and bounds.
She can now write her own name, spell it with out any help and is trying her very best to read!
She is doing excellent at school and we are very very proud of her. She has a wonderful support teacher at school Mrs Frederick, who has amazing patience with her especially when she gets a little bossy!
All of her teachers are very good with her, and she is making lots of friends. Although i think in the future she may be a little mischeif maker!!!!
Ellie Mae is still getting used to her wheelchair, but is getting better by the day. It is lovely now the weather has improved and she can go outside in it!
Although she is far more aware when people are looking at her and this she finds very upsetting. We know she will have to get used to it as it will always happen but it is still very hard to deal with, knowing that people still stare and gawp at her, but she is made of stern stuff and im sure in time she will learn to ignore people comments.
Ellie Mae is now constantly on the go. She can pull herself up into a standing position and can walk the full length of the sofa holding on with her left arm.
We are still hopeful that in time she may be considered for prosthetics, we just have to convince the professionals of this, although if Ellie Mae has her way, she will walk with or without them!
There is plenty planned for this year and i will update the page as soon as anything happens.
Well, where to begin!!
Ellie Mae has grown into a beautiful young lady. She appeared on the Jeremy Kyle Show - For Inspirational Children and even though we are completely biased - she stole the show!!! Completely bossed the man himself around and made him move seats!!!!
Ellie Mae is flourishing at home and at school. She is now brimming with confidence and will let nothing stand in her way - literally.
We have had all the renovations completed on our house, groundfloor bedroom and bathroom for Ellie with a playroom too!! She loves it! She also had one of her other birthday wishes granted - we gave in and she had a puppy. Not just any puppy, but a German Shepherd, she is beautiful, and Ellie Mae adores her. Although she is no longer a small puppy, Ellie Mae still bosses her around!
Other news is that after nearly 5 years in October 2011, Ellie Mae had her colostomy bag removed.
In June 2011, we had an appointment with the prosthetic clinic. They agreed to try and make her a pair of 'rockers' or 'pylons'. These are basically a hard shell which attach to the bottom of her legs and she should be able to try and walk - with the aid of a walking frame. I am very pleased to say she flew it!!! So in August 2011 they agreed to try and make her a set of legs. I was handed a prosthetic foot and told to go and buy a lovely pair of shoes and take them back to the next appointment. I cried all the way to Clarks. I was about to buy Ellie Maes first ever pair of shoes. Imagine the poor girls face when i handed her a bag with a foot in it!!
Ellie Maes new foot x
Her new socks and shoes!
A little retail therapy for new jeans and shoes!!!
How beautiful does she look x x x x x
Ellie Mae and her beloved doggy x x
We are incredibly proud of Ellie Mae and everything she has achieved. She is our shining light x x x x x x x
Ellie Mae has now completed her sponsored walk to raise funds for our local Church and incredibly raised a massive £4521!! Tatty Teddy and the Lady Mayoress completed the walk with her around Northwood Stadium, she managed to walk a whopping 400m, it was an immense challenge but what a superstar she is!
She was also sponsored by Mercedes.
Well done Ellie Mae!