Tuesday, June 2, 2015
1 day to go
Shane Jeffery Kate Davies Phillip Butterfield Helen NicholsonLeanne Wilkins til we abseil 80ft down Berry Head to raise money and awareness for The MPS Society
The amazing Karen Miller has made some beautiful blue cupcakes and the wonderful owners at the Guardhouse Café at Berry Head have agreed to sell them with proceeds going to The MPS Society.
After our abseil we will be heading up to the cafe for a well earned cuppa and cake - please come along and join us!
Or you can donate at www.justgiving.com/mpsabseil or text MPSA85 followed by £1,£2,£3,£4,£5,£10 to 70070
4 days to go
Please donate at www.justgiving.com/mpsabseil
Corey, his brain and school.
MPS affects the brain and can cause mental delay. Despite Corey's treatment MPS is still progressive and degenerative - this means that skills he has learnt throughout his life, in the future he may lose those skills and regress.
Doctors tell me that the MRI scans of Corey's brain look like a 'typical Hurler' brain, I was also once told that a typical brain looks like lots of ridges where as an MPS brain is more smooth.
Corey is the youngest boy in his year and is currently working at an age appropriate level in year 2.
Corey has a Statement of Special Educational Needs. He has 1:1 help in the classroom and at playtimes to keep him safe and to help his learning. Corey finds it hard to retain lots of information and needs it repeating many times.
We attend regular meetings with the school to set targets for Corey and review his progress.
MPS affects the brain and can cause mental delay. Despite Corey's treatment MPS is still progressive and degenerative - this means that skills he has learnt throughout his life, in the future he may lose those skills and regress.
Doctors tell me that the MRI scans of Corey's brain look like a 'typical Hurler' brain, I was also once told that a typical brain looks like lots of ridges where as an MPS brain is more smooth.
Corey is the youngest boy in his year and is currently working at an age appropriate level in year 2.
Corey has a Statement of Special Educational Needs. He has 1:1 help in the classroom and at playtimes to keep him safe and to help his learning. Corey finds it hard to retain lots of information and needs it repeating many times.
We attend regular meetings with the school to set targets for Corey and review his progress.
5 days to go!
MPS affects every part of the body. Therefore Corey sees many specialists on an annual, 6 monthly or 3 monthly basis! Our current list of specialists involved looks like this:
Paediatrician (General Health), Neurosurgeon (Spine), Neurologist (Head), Audiologist (Ears), Ophthalmologist, Optometrist, Optician (all Eyes), Cardiologist (Heart), Metabolic Specialist (General MPS), Orthopaedic Surgeon (Bones), Endocrinologist (Hormones & Growth), Physiotherapist (Movement), Occupational Therapist (Mobility), Speech and Language Therapist and a Community Care Worker.
In the past 6 years we've also had the following on board: Gastroenterologist (Stomach Ulcers & Feeding), Plastics surgeon (Carpal Tunnel), Haematologist (Blood), Oncologist (Transplant / Chemo), Urologist (Bladder, Ulcers and Hypospadias), Dermatologist (Skin & Ulcers) and Rheumatologist (Ulcers / Behcet's).
Please donate to The MPS Society - We are abseiling 80ft down Berry Head next week to raise funds and awareness of MPS.
www.justgiving.com/mpsabseil
www.justgiving.com/mpsabseil
9 days to go til our abseil
Please donate at www.justgiving.com/mpsabseil
I am counting down to our abseil by telling you about our life with MPS.
Another of the symptoms of MPS is skeletal deformity.
Corey was born by emergency C Section as he was breech and my waters broke at 37 weeks. He was born with a perfectly 'normal' shaped head! When he was 5 months old and what seemed to happen, literally overnight, he developed ridges above his ears. (Star Trek fans - remember the ferengi?)
He had a skull xray (this was before a diagnosis of MPS) and the report said that it was due to his head being in my pelvis pre-natally! His head was never 'down' throughout the whole pregnancy.
If more doctors were aware of the signs and symptoms of MPS then treatment could be started sooner. This is why we raise awareness - because one day it WILL lead to a cure.
Another of the symptoms of MPS is skeletal deformity.
Corey was born by emergency C Section as he was breech and my waters broke at 37 weeks. He was born with a perfectly 'normal' shaped head! When he was 5 months old and what seemed to happen, literally overnight, he developed ridges above his ears. (Star Trek fans - remember the ferengi?)
He had a skull xray (this was before a diagnosis of MPS) and the report said that it was due to his head being in my pelvis pre-natally! His head was never 'down' throughout the whole pregnancy.
If more doctors were aware of the signs and symptoms of MPS then treatment could be started sooner. This is why we raise awareness - because one day it WILL lead to a cure.
11 days to go til our abseil
MPS affects every part of a child's body. Before Corey was diagnosed some damage had already been done by the disease. His treatment only slows down the progression, it does not fix what was already affected or cure the disease.
MPS can cause thickened heart valves, leaky heart valves, thickened heart muscle and narrowed arteries. Sometimes heart valve replacement surgery is necessary.
Corey has an echocardiogram (ultrasound of the heart) every year by a cardiologist from Bristol who visits Torbay. This checks his heart and valves and monitors any changes. I'm extremely pleased to say that he has been stable with no leaks and his heart looks 'typical' for a child with MPS1! He is due to be seen in July this year.
12 days to go until abseil at Berry Head
We have now recruited 2 more friends Dave and Mark - Thank you!
MPS and sleep. I think we have it pretty good with Corey compared to some MPS families.
He doesn't often sleep through the night and can wake up to 3-4 times. Sometimes just for comfort, sometimes with pain and sometimes inconsolably for no apparent reason. But he has and it is getting better and more frequent.
He won't go to sleep by himself and always wants to hold a hand while he nods off, I think this is from his hospital days when he was cuddled to sleep a lot and woken up a lot throughout the night.
I never let him cry or try to 'self soothe', it's just one of those things in our life - plus I know that it will last forever and sometimes one of my favourites times of the day is holding his hand and watching his eyes close and being close to him telling him that I love him and that he's so so special; always with tears in my eyes.
He won't go to sleep by himself and always wants to hold a hand while he nods off, I think this is from his hospital days when he was cuddled to sleep a lot and woken up a lot throughout the night.
I never let him cry or try to 'self soothe', it's just one of those things in our life - plus I know that it will last forever and sometimes one of my favourites times of the day is holding his hand and watching his eyes close and being close to him telling him that I love him and that he's so so special; always with tears in my eyes.
13 days to go
Please sponsor us to abseil 80ft at Berry Head in aid of the MPS Societywww.justgiving.com/mpsabseil
I am counting down the days by giving you a glimpse of what our lives are like living with Coreythis condition.
There is a lot going on in Corey's life but it's not all doom and gloom! He loves school and has lots of friends, he is a very sociable child! He is doing really well at school too and has help to ensure he is safe but also to ensure he understands what is required of him He processes information slowly and needs help to retain it and to focus his attention. He is improving in all areas and goes to a couple of after school clubs. He's a very happy boy and will give anything a try usually. He loves dancing and his favourite music is One Direction! He's a creative type and has always loved doing arts and crafts. He doesn't let anything stop him and is determined, independent, polite and every day I am in awe of him.
I am counting down the days by giving you a glimpse of what our lives are like living with Coreythis condition.
There is a lot going on in Corey's life but it's not all doom and gloom! He loves school and has lots of friends, he is a very sociable child! He is doing really well at school too and has help to ensure he is safe but also to ensure he understands what is required of him He processes information slowly and needs help to retain it and to focus his attention. He is improving in all areas and goes to a couple of after school clubs. He's a very happy boy and will give anything a try usually. He loves dancing and his favourite music is One Direction! He's a creative type and has always loved doing arts and crafts. He doesn't let anything stop him and is determined, independent, polite and every day I am in awe of him.
14 days to go
We are abseiling 80ft at Berry Head in Brixham wearing blue to raise awareness and funds for The MPS Society.
Today, 6 years ago, we received Corey's confirmed diagnosis of MPS1 - Hurler Syndrome.
What I remember most about this day was sobbing. Once we got home from the hospital and researched online what MPS1 meant for our son and how to pronounce it, I literally grieved. After that there were the phone calls, emails and visiting family and friends to explain the diagnosis to them. I think from that moment on we knew that we had to be and stay strong for Corey to stand any chance of getting through the treatment and surviving.
6 years on and he's still here doing great!
Please donate at www.justgiving.com/mpsabseil or via text MPSA85 £1,£2,£3,£4,£5,£10 to 70070
Today, 6 years ago, we received Corey's confirmed diagnosis of MPS1 - Hurler Syndrome.
What I remember most about this day was sobbing. Once we got home from the hospital and researched online what MPS1 meant for our son and how to pronounce it, I literally grieved. After that there were the phone calls, emails and visiting family and friends to explain the diagnosis to them. I think from that moment on we knew that we had to be and stay strong for Corey to stand any chance of getting through the treatment and surviving.
6 years on and he's still here doing great!
Please donate at www.justgiving.com/mpsabseil or via text MPSA85 £1,£2,£3,£4,£5,£10 to 70070
16 and 15 days to go (too tired yesterday!)
Kate Davies Shane Jeffery Phillip Butterfield - until our abseil at Berry Head, 80ft to raise money for The MPS Society and awareness of MPS diseases. Sponsor us at www.justgiving.com/mpsabseil
Anaesthetics have become a bit of a norm for us over the last 6 years. Corey was only 4 months old when he had his first 'general' to correct a hernia (another symptom of MPS). He has now had 25 general anaesthetics.
All but 1 of these has been at Bristol Children's Hospital due to him being high risk and requiring an anaesthetist with MPS knowledge.
MPS makes him high risk due to his cervical spine instability, short neck, narrowed airways, thick tongue and limited jaw / neck movement. He has only recently started to use a gas induction instead of a needle.
Before an anaesthetic Corey can't eat solid food for 6 hours or drink any water for 2 hours prior to admission.
He's absolutely brilliant at waiting and even walks down to theatre and climbs onto the bed, this week he's also been very nosey asking what everything is and what everyone is doing! Knowledge is power!
Anaesthetics have become a bit of a norm for us over the last 6 years. Corey was only 4 months old when he had his first 'general' to correct a hernia (another symptom of MPS). He has now had 25 general anaesthetics.
All but 1 of these has been at Bristol Children's Hospital due to him being high risk and requiring an anaesthetist with MPS knowledge.
MPS makes him high risk due to his cervical spine instability, short neck, narrowed airways, thick tongue and limited jaw / neck movement. He has only recently started to use a gas induction instead of a needle.
Before an anaesthetic Corey can't eat solid food for 6 hours or drink any water for 2 hours prior to admission.
He's absolutely brilliant at waiting and even walks down to theatre and climbs onto the bed, this week he's also been very nosey asking what everything is and what everyone is doing! Knowledge is power!
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