Emily's story - early intervention
Donation protected
Emily Christine Sayers was born on 12th June 2014 with her dad's eyes and her mother's lips and is the most beautiful and treasured little girl.
But she came into the world after a long, arduous labour. Due to complications during that labour, Emily sustained a brain injury as she suffered from hypoxic -ischemic encephalopathy.
The prognosis is Emily’s motor skills are quite severely affected and the full extent of her cognitive impairment is still unknown.
Emily will struggle to move, every movement requires an immense effort on her part. But she does move, albeit slowly and infrequently. She loves to stand and take her weight. She used to roll but can't always remember how and sitting is still eluding her, but not for lack of trying. Emily’s head control is intermittent but again she is a little trooper and just keeps doing it again and again and again even though she tires. Together, Emily, Ben and I work with a physiotherapist and attend hydrotherapy 3 times a week to keep her muscles and tone developing as she grows.
In her first nine months, Emily has already endured more hospitalisations and medical interventions than most of us will have in our lifetimes. She has microcephaly (small head growth due to her diminished brain mass), severe reflux, vision impairment, seizures and cerebral palsy.
Emily's eyesight is an unknown as her eyes don’t currently track normally, but she has been assessed regularly and so far doctors can see no structural issues. We have linked in with specialists to continue some therapies and see if this is purely delayed development due to her neurological injury. Where her eyesight is unknown, Emily’s hearing is impeccable and thus she enjoys being read to and loves listening to music.
Feeding has also been an issue with terms like 'failure to thrive' being thrown around. Originally an NG (a tube via the nose to the stomach) fed Emily but after a long 5 weeks we had her on a bottle. She even took the breast for 5 days! However this was short lived as seizures and reflux both played a part in taking away her ability to eat and keeping it down.
We then had to concede to an NG tube again which Emily hates and never wants to orally feed whilst it's in. It's an awful ordeal to insert as they need replacing and can be sneezed or coughed out – which Emily did regularly. Eventually she wouldn't take any feeds whilst awake as she would fuss and throw up – in the end her system was so intolerant of feeds she was fed by a machine at night at 15mls every hour. But we gradually built her tolerance up, got the reflux under control and eventually got her back onto bottles! Unfortunately breast feeding would never be an option again
More recently, Emily has done amazingly well and now eats a variety of purées. We are working closely with a speech pathologist and hope to get her onto more solids in the future. Her speech pathologist is very positive as Emily is also makes lots of chatting sounds – which hopefully bodes well for the future.
Although her MRI paints a bleak picture, the good news is there is hope. But early intervention is key.
The benefit from brain injuries sustained at birth is that the brain is still growing and developing. So the more therapies Emily participates in and the more stimulation she receives, the more inclined her brain is to develop the pathways she needs. We can only continue to give her the best possible chance – the results are largely unknown as no two cases are the same.
But we plan to try everything. Emily has already shown she is willing and she will be given every opportunity to reach her full potential. But she'll need more help than we are able to provide her with. Emily is our utmost priority, our greatest love, our most amazing miracle and our brave little soldier. Emily has an amazing soul with such a gentle nature and graceful perseverance; she'll amaze us all. She already has.
Please help us enable Emily to become all she can be. I can assure you she is worth it.
But she came into the world after a long, arduous labour. Due to complications during that labour, Emily sustained a brain injury as she suffered from hypoxic -ischemic encephalopathy.
The prognosis is Emily’s motor skills are quite severely affected and the full extent of her cognitive impairment is still unknown.
Emily will struggle to move, every movement requires an immense effort on her part. But she does move, albeit slowly and infrequently. She loves to stand and take her weight. She used to roll but can't always remember how and sitting is still eluding her, but not for lack of trying. Emily’s head control is intermittent but again she is a little trooper and just keeps doing it again and again and again even though she tires. Together, Emily, Ben and I work with a physiotherapist and attend hydrotherapy 3 times a week to keep her muscles and tone developing as she grows.
In her first nine months, Emily has already endured more hospitalisations and medical interventions than most of us will have in our lifetimes. She has microcephaly (small head growth due to her diminished brain mass), severe reflux, vision impairment, seizures and cerebral palsy.
Emily's eyesight is an unknown as her eyes don’t currently track normally, but she has been assessed regularly and so far doctors can see no structural issues. We have linked in with specialists to continue some therapies and see if this is purely delayed development due to her neurological injury. Where her eyesight is unknown, Emily’s hearing is impeccable and thus she enjoys being read to and loves listening to music.
Feeding has also been an issue with terms like 'failure to thrive' being thrown around. Originally an NG (a tube via the nose to the stomach) fed Emily but after a long 5 weeks we had her on a bottle. She even took the breast for 5 days! However this was short lived as seizures and reflux both played a part in taking away her ability to eat and keeping it down.
We then had to concede to an NG tube again which Emily hates and never wants to orally feed whilst it's in. It's an awful ordeal to insert as they need replacing and can be sneezed or coughed out – which Emily did regularly. Eventually she wouldn't take any feeds whilst awake as she would fuss and throw up – in the end her system was so intolerant of feeds she was fed by a machine at night at 15mls every hour. But we gradually built her tolerance up, got the reflux under control and eventually got her back onto bottles! Unfortunately breast feeding would never be an option again
More recently, Emily has done amazingly well and now eats a variety of purées. We are working closely with a speech pathologist and hope to get her onto more solids in the future. Her speech pathologist is very positive as Emily is also makes lots of chatting sounds – which hopefully bodes well for the future.
Although her MRI paints a bleak picture, the good news is there is hope. But early intervention is key.
The benefit from brain injuries sustained at birth is that the brain is still growing and developing. So the more therapies Emily participates in and the more stimulation she receives, the more inclined her brain is to develop the pathways she needs. We can only continue to give her the best possible chance – the results are largely unknown as no two cases are the same.
But we plan to try everything. Emily has already shown she is willing and she will be given every opportunity to reach her full potential. But she'll need more help than we are able to provide her with. Emily is our utmost priority, our greatest love, our most amazing miracle and our brave little soldier. Emily has an amazing soul with such a gentle nature and graceful perseverance; she'll amaze us all. She already has.
Please help us enable Emily to become all she can be. I can assure you she is worth it.
Organizer
Gemma Landon-Grennan
Organizer
Belrose NSW
