Paige is 5 years old.
She goes to Chestnut lodge school in Widnes.
Paige got diagnoised with West Syndrome in December 2006. Paige has had MRI scans, EEG's, ECG's, Lumbar Puncture's, skin biopsy, ultrasounds, videofluroscopys has regular blood and urine tests, and is currently undergoing genetic testing all at Alderhey Childrens Hospital, Liverpool.
Paige had a gastromony fitted June 2007 and became nil by mouth she is fed completely via a tube which goes directly into her stomach. Paige had the gastromony replace and now has a Mic-key button which is the same but it has a detatchable tube in 2008.
Paige became very poorly Novemeber 2009 and became oxygen dependent. She was unable to breathe without help. Over the next few months Paige started to deteriated and wasn't absorbing her feeds, medication and on many occasions we found her blue due to refluxing and aspirating fluid into her lungs. which led to collapsing of the lungs and many trips my ambulance to hospital. Because of this she had an emergency operation August 2010 which was a Nissen Fundolplication - this life saving procedure is basically closing the top of the stomach so nothing can come up and nothing can entre the stomach. This was a massive operation, Paige spent 11 weeks in hospital due to complications she was on ICU - she needed a blood transfusion, platelets transfusion and got septicemia. Since the operation Paige has made a dramatic recovery. She came off oxygen (only uses now when poorly) and has only had 2 chest infections this year!
Paige has spent most of her life in and out of hospital its part of who she is. From overnight stays to weeks even months.
Paige was registered blind May 2011. We feel Paige can see but not sure how much but she responds to lights, dark, light black and white. Paige's seizures are still not controlled on a good day Paige have between 10-30 big fits and alot of little startle spasms. Paige is currently on 4 lots of epileptic medications, a sedative to help her sleep, reflux medicine and a precaution antibiotic steriod in the winter months.Paige has daily suction, heart and saturation monitoring for her breathing and oxygen levels, oxygen, nebulizer and has a feeding pump to feed her.
Paige is a lovely little girl who knows what she likes and doesnt like everyone who meets her fall in love with her straight away. You can see in her eyes she is happy little girl and when she is sad she lets you know. If i could take away her problems i would in a heart beat.
Paige loves going swimming, she attends hydro session once a week a school, this helps her relax and her muscle loosen up shes a different person in the water she moves freely and is so relaxed, she kicks and splashes too! Paige loves listening to music anything from Disney music classical music like baby Einstein.
Paige goes to Zoe's Baby Hospice and Clairehouse Childrens Hospice 16 days a year for respite please have a look at what a fantastic place these are for us - gives us a break and a home from home for Paige:
http://www.clairehouse.org.uk/
http://www.zoes-place.org.uk/liverpool/
xxx
She goes to Chestnut lodge school in Widnes.
Paige got diagnoised with West Syndrome in December 2006. Paige has had MRI scans, EEG's, ECG's, Lumbar Puncture's, skin biopsy, ultrasounds, videofluroscopys has regular blood and urine tests, and is currently undergoing genetic testing all at Alderhey Childrens Hospital, Liverpool.
Paige had a gastromony fitted June 2007 and became nil by mouth she is fed completely via a tube which goes directly into her stomach. Paige had the gastromony replace and now has a Mic-key button which is the same but it has a detatchable tube in 2008.
Paige became very poorly Novemeber 2009 and became oxygen dependent. She was unable to breathe without help. Over the next few months Paige started to deteriated and wasn't absorbing her feeds, medication and on many occasions we found her blue due to refluxing and aspirating fluid into her lungs. which led to collapsing of the lungs and many trips my ambulance to hospital. Because of this she had an emergency operation August 2010 which was a Nissen Fundolplication - this life saving procedure is basically closing the top of the stomach so nothing can come up and nothing can entre the stomach. This was a massive operation, Paige spent 11 weeks in hospital due to complications she was on ICU - she needed a blood transfusion, platelets transfusion and got septicemia. Since the operation Paige has made a dramatic recovery. She came off oxygen (only uses now when poorly) and has only had 2 chest infections this year!
Paige has spent most of her life in and out of hospital its part of who she is. From overnight stays to weeks even months.
Paige was registered blind May 2011. We feel Paige can see but not sure how much but she responds to lights, dark, light black and white. Paige's seizures are still not controlled on a good day Paige have between 10-30 big fits and alot of little startle spasms. Paige is currently on 4 lots of epileptic medications, a sedative to help her sleep, reflux medicine and a precaution antibiotic steriod in the winter months.Paige has daily suction, heart and saturation monitoring for her breathing and oxygen levels, oxygen, nebulizer and has a feeding pump to feed her.
Paige is a lovely little girl who knows what she likes and doesnt like everyone who meets her fall in love with her straight away. You can see in her eyes she is happy little girl and when she is sad she lets you know. If i could take away her problems i would in a heart beat.
Paige loves going swimming, she attends hydro session once a week a school, this helps her relax and her muscle loosen up shes a different person in the water she moves freely and is so relaxed, she kicks and splashes too! Paige loves listening to music anything from Disney music classical music like baby Einstein.
Paige goes to Zoe's Baby Hospice and Clairehouse Childrens Hospice 16 days a year for respite please have a look at what a fantastic place these are for us - gives us a break and a home from home for Paige:
http://www.clairehouse.org.uk/
http://www.zoes-place.org.uk/liverpool/
xxx