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
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.
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