Unfortunately God had other plans for her and shortly after returning from this cruise she collided heads with another child while playing at school. She received an acquired brain injury and that is when our whole world turned upside down.
Miranda was intubated straight away as they ran tests and we were discharged after 5 nights. She was vomiting and not herself, her personality had changed and she started struggling at school. We spent the next 6 months trying to find out what was wrong with her and we were told by the hospital that she was nothing but an attention seeker. She started to get bullied at school, because she was now struggling to complete any work and kids were asaking questions like "why are you so dumb?" It was absolutely heart breaking. Even more so that I couldn't get any of the medical profession to listen.
One morning when I went to wake her for school, I found her underneath the bed and when I tried to wake her she was unconscious and black and blue all over. She was seizing in my arms as I called for my husband to call the ambulance. She seized for 10 hours before they were able to control her seizures. She was placed into an induced coma and we spent the next 3 months in hospital. ICU and the medical ward was our new home.
The next 4 years followed a similiar pattern in and out of hospital. She was deteriorating quickly and they were looking for underlying neuro degenerative conditions to explain her regression. She had every test in the world done, Numerous lumbar punctures, 2 skin bopisies, liver, muscle, rectal, brain biopsy, mri's and every known blood tests. In total we have seen about 15 different specialists. There is no explanation to her illness, just that something is attacking her brain and they don't know what.
Life as we knew it was just a distant memory. Our world was filled with hospital admissions and we lost many friends and family during this time. People didn't know how to react and because our life was now so complicated we started getting more visits from paramedics than friends.
During November of 2012 Miranda stopped eating and we thought her time was up. They found a new lesion on the MRI in the pons area of her brain and we were now seeing lots of seizure episodes where she would stop breathing and turn blue. We were told that her condition was terminal and were put under the care of the palliative care team. Miranda was being fed by a naso gastric tube until we were able to have surgery for a gastostomy button. In January 2012 we failed the ketogenic diet. She was having up to 200 seizures per day and constantly vomiting food and blood. we have also failed 13 anti convulsants.
She is currently having up to a thousand seizures daily. Most of these are drop seizures so we have to follow her every minute of the day. She has received so many injuries from these including, broken nose, split eyes, chipped teeth, split lips, eggs on the back of her head as big as tennis balls,bruised legs and arms. Miranda is currently living on rescue meds as she is having brief seizures every couple of minutes. For Christmas she received a portacath which will help us with rescue meds as she no longer has any veins left. She also has daily tonic clonics and complex partial seizures. Most days up to a thousand seizures.
Despite all this Miranda is my hero. She never complains. She has had more operations then any child should ever know. She has lost all her friends and we have nearly lost her many times, but she is a fighter who isn't about to give up. The MRI says she shouldn't be able to walk, but most days she can. Miranda loves swimmimg and we try to take her every day as this is her happy place.Unfortunatley her pool is an above ground pool which is starting to rust and it's also hard to get her up the steps and to get her out quickly when she has seizures. I have been trying for years to upgrade her pool, but unfortunately I'm not able to work as Miranda requires full time care. She is now severly intellectually impaired and spends alot of time in hospital. Please help no matter how small and share this with your friends and know that you will be making one little girl very happy.
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