Amy Rose's Army
Amy-Rose has athetoid/dyskinetic quadriplegic cerebral palsy and is 100% tube fed through a transgastric jejunostomy button on her stomach. We do not know which milestones amy will or will not meet and have had to adapt a "wait and see" approach. Amy receives regular physio, speech and language therapy, occupational therapy and various others. We see a dietician, pediatrician, portage services and much more. Every minute of every day is dedicated to ensuring Amy achieves her absolute full potential. Amy has abnormal/high muscle tone because of how her brain controls her muscles. She is on muscle relaxant medication for this but even with this she can be very difficult to handle and it makes it difficult for her to do things such as learn to sit. She also has an extension pattern that again, makes it quite tough!
Edit - this needs updating!
After a healthy pregnancy amy went into shock when her mum was in labour and was born via emergency c-section. Amy was not born breathing and it took 8 minutes to bring her back to life. The lack of oxygen to her brain caused her to suffer a severe brain injury (hypoxic ischemic encephalopathy) and she was rushed to newborn intensive care. She was in hospital for the first few months of her life and she received cooling treatment to prevent the damage spreading. It is not known why Amy went into shock and the incident was deemed unpreventable.
Update - Amy had her gastrostomy and fundoplication surgery in Oct 2014. In November 2014 the fundoplication failed and reflux symptoms are back. This has been a huge step back for us in amy's development and comfort. More surgery is likely to be needed and it is a very distressing time for everyone involved. Amy now has a standing frame and adaptive seating as she is not able to sit/crawl or walk (yet.. we hope!) We have a mix of pump feeds and blended diet feeds to help amy's comfort and ensure she is receiving a nutritious diet. We are due hearing aids soon and amy now has her glasses. We are fearful that seizures may be back and are awaiting an EEG and visit to the pediatrician. Our speech and language therapy has not been going well due to the return of reflux but are advised to start a messy play class at the hospital to encourage amy to build a relationship with food as this is how children learn to feed. I am on the waiting list to learn sign language as we know that verbal communication will be an issue for amy so we want to maximise our chances of helping our girl tell us what she wants and express herself.
All money raised will help us purchase essential equipment not available on the NHS and to help raise money for expensive therapies also not available for free. So far we have been enabled to buy seats for amy to sit in shopping trolleys and park swings (this has been life changing for us and made things so much easier as well as aid her independence), an upsee so she can feel the sensation of walking, and some sensory equipment to help encourage her vision and focus. We are hoping to one day embark on a tube weaning process so amy can hopefully learn to eat... this is very expensive but we are determined to help our little girl.
Thanks so much to friends, family... everyone for your outstanding support. We have met some truly fantastic people on this journey. Special thanks to the grandparents, doctors, nurses, those that saved our daughter's life and were there for us. You are incredible... there are no words. I have been absolutely overwhelmed by the generosity and kindness of others. Thank you.
Follow on facebook for news, updates and pictures - https://www.facebook.com/Amyrosesarmy
Should we exceed the target amount (or if we do not raise enough funds, or if they cannot be used for any other reason) the funds raised will go to the general funds of Tree of Hope to assist other sick children.