I didn’t have a good start to life. Born on 12th May 2013, I suffered a brain injury during birth due to lack of oxygen, the technical term for my condition is Hypoxic Ischemic Encephalopathy or HIE. When I was born I was very poorly and wasn’t expected to live past a few days . But with lots of support and hope from family and friends, I have come a long way.
My condition means that we do not know what the future holds or how my brain injury will affect my progress in the future. As you can see, I need a Nasogastric Tube (or NG) for my feeding and even then, my tummy likes to send it all back up again so I need 24 hour watching. I also have hearing aids as I find things very difficult to hear.
Mummy and Daddy are looking at all forms of treatment and equipment to help me and, unfortunately, not all of these can be supplied through the NHS.
I have recently started High Dosage Oxygen Therapy provided by a Multiple Sclerosis Therapy Centre based in Swindon. This is the closest therapy centre who will take babies or children at present. Mummy and I go into a chamber which is pressurised to a depth of 16 ft and then I am put into a bag which has oxygen piped in. Oxygen is a great natural healing agent, and in order to increase the supply, it must be breathed at an increased pressure. When this is done, something extraordinary happens; swelling around nerve tissue reduces and blood vessels constrict, and oxygen involves into the plasma preventing leakage, this allows repair to take place. The treatments are in blocks of 20 sessions and I can have up to 5 sessions a week. I am hoping to be able to have 80 treatments before my first birthday as this is when the brain does a large proportion of its growing, developing and making new connections.
UPDATE 12th May 2014
Today I am one - Happy Birthday to me!
In my first 12 months I have managed to not only reach my goal in terms of HBOT treatments but to prove to Bristol and shortly Exeter that they can treat babies and children too. Not only does this mean that I no longer have to travel to Swindon (although I sometimes do because they are lovely) and can go to Bristol instead but hundreds of kids like me in the SW now have access to local treatment How fab is that ? Contact your local MS Therapy Centre for details.
I am doing well, far better than expected although that doesnt mean miracles. I have inchstones not milestones! It's been tough and I've so many more things to face but thus far my eyesight has shown signs of improvement and I am now being tested in the hope of cochlear implants to give me some form of hearing.
Brainwave have given me a programme of exercise to help with my movements due to the cerebral palsy and, thanks to an operation, my NG tube has gone from my face and I have a peg in my tummy and can be tube fed without a sore face from those stickers.
The really exciting news is that I start Nursery soon ! Just like Ollie, I can go to Kingwood Nursery in Uffculme and start to make new friends. With the help of a multi sensory worker, for a couple of hours a week, I now have the opportunity to try what the other kids try.
THE PLAN for Year 2
We are now looking at the possibility of extending my home so that I can have a bigger bedroom, a lift to get upstairs and all the bits to make having a bath easier. The hope is to include a sensory area so what this space - we might have another daft fund raising idea for this later on !! We are also looking at wheelchairs as I am outgrowing the pushchair.
Thank you so much to Newlife and to Sam's family who are amazing. See the link on our home page on how I got a new wheelchair.
I have just had an operation to have my cochlear implants and am looking forward to starting music therapy.
Can you beleive it - I have reached the grand old age of two and am exceeding all expectations. I had a slight blip with a couple of prolonged seizures (one of which had me in Bristol on life support) but am now on full time meds to hopefully bring things back under control.
Life is very busy as I now have over 20 different consultants/therapists etc to take care of my many needs. I attend Kindwood Nursery twice a week alongside my multisensory worker and like to watch the other kids and join in when I can.
Next step is to find me a specialist school to start after christmas as well as putting plans in place for an extension to give me my own room with all the equipment that I need.
Started school in January and really love it. They have lots for me to do and I enjoy being busy, busy. Major event was the arrival of my little brother Stanley in January. He is amazing and I love holding him and having cuddles.
Life has been a bit of a struggle recently as my seizures have proved to be a bit of a problem. This means I have to take lots of meds which have made me rather tired and I'm not doing as much as I was. Still keep trying with my cheeky grin though.