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The waiting game

isabella still isn’t great I had to go and collect her from school yesterday as she was having so many seizures that it wasn’t safe for her to travel onschooltra sport.i have to admit that it’s breaking my heart seeing my beautiful girl like this. She is still sleeping most of the day and night and a lot of the time when she is awake she is having absence seizures so is unaware I am here. Every so often. My little fighter breaks through and I get the most beautiful smile and cuddle it’s these precious moments that are Keeping me going. I think this is part of the reason why I am doing the nuclear run. Obviously we need the money to be able to provide for Isabella and the equipment support and therapy she will need I the future. At the. Minute I feel useless that I can’t make my child better and I guess this is the only way I can feel slightly less of a failure. I have spent the evening going through some old photographs from last year and listening to videos of her giggling. I sometimes wish I could be as brave as Isabella.

The picture on the left is Isabella holding my hand whilst we wait to go down to be sedated for her MRI and on the left she is looking unhappy and struggling to stay awake during her eeg.

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I am feeling slightly relieved that the MRI and EEG has been done we just need to wait for the results to come through now in the hope that this will give the doctors some answers. I know our consultant who is a wonderful man is feeling equally frustrated that everything he is trying isn’t working and he is linking in with greater ormond street hospital although they are all waiting for the results of the MRI now before they decide what to try next. Isabella is due to have her bloods taken again this week and depending on the results she may be able to have an increase in her medication whilst we wait for another strategy to be decided.

 

The last year

firstly apologies for allowing the site to get so out of date but the last year has been quite difficult for us as a family and the fundraising has had to take a back step. Isabella has been really struggling with her epilepsy and it has been difficult to get under control. She was having seizures every day and was turning blue in quite a few of them. This has been a huge adjustment for us all and many nights have been spent sat up just watching her as we were too scared to sleep in case we missed one.  She has had all her medicines increased and an extra one added and whilst it has improved it a small amount she is still having four to five seizures a week  and absences in between. She has had  two eg tests which showed her brain activity was grossly abnormal and we have just been to great ormond street hospital for anMRI and are just waiting for the results from this and a  appointment with the specialist to decide on the next plan of action.

on a more positive note we have welcomed a new addition to our family. I am pleased to say Isabella has a new baby sister called Matilda and they are absolutely wonderful together.  My heart literally bursts seeing them together

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Isabella meeting her sister for the first time

Isabella meeting her sister for the first time

 

All about isabella and why we raise money

I am not a writer, never have been and I really don’t see it in my future. So please be patient with me with this blog but a lot of the time I will be talking about things that don’t come easy to me and that if I am honest I don’t even want to admit to. For those that don’t know me, my name is Christine and I am mummy to the most amazing little girl. When Isabella was born she was just perfect in my eyes and still is. However after a few weeks it became evident that things were not as they should, Isabella was refusing to feed whilst I was asking for help I was just repeatedly threatened with social care by my health visitor who repeatedly told me I was trying hard enough to feed her. I can’t tell you how heart breaking it was to not be listened to.  Thankfully our GP was great and at Isabella’s six week check-up she identified that Isabella had two holes in her heart and should be in hospital. We were taken to hospital straight away which is what can only be described as the beginning of a whirlwind few years. Isabella was admitted and after a week after every nurse in the hospital attempting to feed Isabella they accepted defeat and a NG (nasal gastric) tube was given to Isabella so we could feed her. I can remember feeling completely overwhelmed as the doctors spoke to me about the possibilities and symptoms of Isabella going into heart failure we had to be trained on resuscitation and how to feed Isabella before we were allowed to return her home. At this time I felt like my world was ending and that my heart had broken, I found I didn’t want to leave her even for a split second and just held her . The plan was always that medication would control her heart condition till she was stronger thankfully at this point in time Isabella has surprised the heart specialist and has coped without heart surgery, we just all hope this continues.

ISABELLA BEFORE WE KNEW ANYTHING WAS WRONG

ISABELLA BEFORE WE KNEW ANYTHING WAS WRONG

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A few weeks later I was home with Isabella when she went rigid and she started turning blue, we immediately rushed into hospital and after explaining to doctors what had happened I was looked at like I was a over protective mum and that it would have been reflux. Whilst in the hospital Isabella continued to have similar episode seven when I wasn’t feeding her, finally a junior doctor witnessed one and confirmed to the doctors I wasn’t over reacting and it appeared to be a seizure of some sort. Isabella was rushed off for more tests and it was confirmed she had epilepsy. For the next two years we spent most of our time in and out of hospital as they struggle to stabilize her seizures. My life just felt like treadmill and I was in a complete state of exhaustion whilst I tried to manage hospital admissions whilst holding down my work, at the moment I felt I couldn’t take any more Isabella deteriorated and was diagnosed with meningitis. However seeing the strength my beautiful baby showed pulling through she showed me that we are all incredible and can achieve greatness and that I needed to stay strong.

During the next few years Isabella NG tube was removed and she was fitted with a gastrostomy tube, she was diagnosed with reflux and was registered blind. Isabella was bestowed with illness and every winter it was hit and miss as to whether she would survive as she would come down with pneumonia and we were prepared numerous times by the nursing staff that she wouldn’t survive the night. However she is here and fighting fit and continues to prove the doctors wrong.   During the next few years Isabella NG tube was removed and she was fitted with a gastrostomy tube, she was diagnosed with reflux and was registered blind

 

After a couple of years it became evident that no one was going to help us or Isabella, the first physio stopped seeing her as he said there was no point as she couldn’t do anything, I was somewhat confused as clearly this is the point. By the age of two Isabella had been diagnosed with a rare chromosome disorder, at that time she was the only child in the UK with it so we were linked to a family in the US who proved invaluable and who advised us not to give up and to push Isabella as she could achieve so much more than we thought. At this point Isabella could not make any vocal noises, had never smiled, giggled and showed no emotion. Physically she was so vulnerable to infection and every time she got ill she deteriorated quickly. They told us about a centre in the USA that they had attended and advised us their little girl was walking and eating. I then made one of the hardest decisions I have made, I knew we had to get Isabella to the centre but we just couldn’t afford it.

 

I knew we had to raise the money but to do this I firstly had to accept defeat that as a parent I couldn’t give my little girl everything she needed. even now having to write these words is so difficult for me I can’t help feeling like a failure but giving Isabella every chance in life is so much more important than my pride

We have just returned from Isabella’s second trip from the states it’s been a tough few years with many more years of hard work ahead for all of us. But what you all want to know is how is she doing now, well as you will see from the pictures and the one thing that makes it all worthwhile. Isabella smiles and giggles, I really can’t emphasise or find the words to explain how magical a moment it was to hear her giggle for the first time. I now know for certain that my little girl is happy and that’s the most important thing. We have been under so much pressure over the years from several medical pressures who felt that we should sign a do not resuscitate for her, we never agreed and always fought it and I know it was the right decision. Physically she is so much stronger she is sitting on her own and can hold and move toys. She has just started to be able to sit on a bench on her own and will put her arms out to the side to catch herself when she wobbles. She is also using her standing frame and happily using it for up to an hour.

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So what next,,,,   So what next,,,,

 

well we are still in the position that we have to privately fund all Isabella’s physiotherapy both in this country and abroad, as well as this we are desperate to get our house adapted for Isabella as currently it is not fit or safe for her. None of the doorframes are wide enough for her wheelchair as well as this Isabella doesn’t currently have a proper bedroom and we still have to lift her manually as we have no hoists or equipment for her as we are not allowed the funding for hoists until the house is adapted for her. We are hoping this will be starting in April as we cannot delay any longer as I am starting to suffer with back problems with all the lifting as is my husband; however we are looking at needing to find £30,000 to finish the work. As well as this we have equipment that we feel would be beneficial for Isabella and are looking to buy her a gait trainer which works similar to a baby walker but for older children, however this will cost approximately £2000 but we are hoping it will help train the brain to learn the walking motion as well as hopefully being able to give her a little bit of freedom rather than being pushed around in a wheelchair.   well we are still in the position that we have to privately fund all Isabella’s physiotherapy both in this country and abroad, as well as this we are desperate to get our house adapted for Isabella as currently it is not fit or safe for her

Isabella only receives approximately 20 mins of physio from the NHS a week which is part funded by education, this clearly isn’t sufficient for Isabella, a lot of Isabella’s problems are neurological meaning she needs a lot of repetition t be able to learn anything which is why intensive programmes are so beneficial for her. We have been lucky enough to raise money for Isabella to complete two courses of intensive therapy in America . We have however found a centre inslovakia called the adeli centre which do amazing work with children and adults with neurological conditions. We are hoping that we will be able to raise enough money for her to undergo there programme of therapy. This costs approximately £5000 for a two week course. We also have had to pay to have our house adapted to fulfil Isabella’s needs and whilst we reciebved a grant to cover some of this we had to pay for a lot ourselves. Isabella now has a wonderful downstairs bedroom  and bathroom but at this time is unable to access the kitchen so we are hoping to extend our home so that she will be able to access the whole of the downstairs of the house and participate in normal family activities.

We have done many events over the years unfortunately we lost a lot of our previous entries when our website crashed but I am hoping to put as much back on as quickly as possible so you can see some of the amazing people that have got us to this point and the many more that will help us move forward from here and give Isabella the best life she can possibly have

I am a great believer in that everything happens for a reason and Isabella is my little miracle and is a complete blessing. For a little girl that cannot talk and has difficulty communicating she has touched the lives of so many and is a real testament to what’s important in life. She has changed me forever and is the greatest teacher, she has touched so many and has changed both me and my family for the better. My family and I have always been close but things are most definitely at a different level now, I have met so many incredible and amazing people through Isabella and have formed friendships that I will never forget. You may not all be nearby and I may not get chance to speak to you all every week but you are all in my heart and will always be special to us.

To everyone that has already helped and supported us , thank you, you have given me my daughter which is the greatest gift.  Isabella has not had a period of life threatening sickness since our first visit to America and I put this down to her increased strength and the ability to fight off infections before they take hold of her, the doctors also now agree that her life is worthwhile and she is worth saving. Which everyone else knew all along xxxx