Appeal For Lillymay's Sensory Room
Donation protected
Hi everyone just so you all Know iam Ann jd Rhian is my Daughter and Lilly-May is My Granddaughter xxx
I am Rhian Lilly-may mother, welcome to our little brave fighting angel Lilly-may page, we what to try and raise as much as we can for us to do Lilly-mays very own sensory room, to get some sensory toys and get carl marshall in from Marshall Nightsky Ceilings to do his wonderful work of the night sky and stars on Lilly-may ceiling as she spends most the time on the floor looking up so it give her something to look at when she playing, here is a little bit about Lilly-may, lilly-may has to have a special feeding chair as she got no head control and keeps going forward with her head and making her be sick has she got bad reflex, and she also got to have a special pram as well to help her with her head control and positioning, also she got to have a standing frame as well to help her keeping her leg strength as there is a possibility that she might not walk but with the standing frame they can try and get her use to being in the standing position, and also she needs a special seat for the bath as well, and she have had her MRI results back and it come back that she has got leukodystrophy which I white matter on the brain is not working as it should be doing (google it would be better to get more stuff about this if you want o know more ), so we still waiting on more blood results that was taken before she had this MRI scan, so when they come back then we will know more about this leukodystrophy and what can be done if anything can be done, she got to have another MRI scan in 3 months time to she where lilly-may is at with this leukodystrophy, She was diagnosed with Silent aspiration back in January this year and cause of this she is a good few months be hide what other children should be at her age she is 16months but she is lie a new born baby, she cant sit up on her own crawl roll over walk or talk or anything else she should be doing for a child that's 16 months of age, because she got this silent aspiration this occurs in people that have swallowing problems, which is known as dysphagia. Aspiration is when food, liquids, or stomach contents are swallowed poorly, and go into the lungs by mistake. Usually when this happens, normal healthy people will turn red and start to cough, as an attempt to get it out of the lungs (think about yourself, when "something goes down the wrong pipe"). However, as people get weak and swallowing worsens, this aspiration can happen silently which means there will be no signs showing that this has occurred. In other words, you will not see any coughing, choking, or turning red.
Aspiration is dangerous because the food/liquids/stomach contents enter into the lungs, which is very irritating. It can develop into an aspiration pneumonia, which is very hard to treat, even with multiple antibiotics. She is due to have a operation but the waiting list is 1-2 years waiting list and she only been put on this list in may this year, now this operation is for her to have Percutaneous endoscopic gastrostomy (PEG) here is a little bit about what PEG is about means for you to know what we talking about, It is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (for example, because of dysphagia or sedation). This provides enteral nutrition (making use of the natural digestion process of the gastrointestinal tract) despite bypassing the mouth; enteral nutrition is generally preferable to parenteral nutrition (which is only used when the GI tract must be avoided). The PEG procedure is an alternative to open surgical gastrostomy insertion, and does not require a general anesthetic; mild sedation is typically used. PEG tubes may also be extended into the small intestine by passing a jejunal extension tube (PEG-J tube) through the PEG tube and into the jejunum via the pylorus
PEG administration of enteral feeds is the most commonly used method of nutritional support for patients in the community. Many stroke patients, for example, are at risk of aspiration pneumonia due to poor control over the swallowing muscles; some will benefit from a PEG performed to maintain nutrition. PEGs may also be inserted to decompress the stomach in cases of gastric volvulus. because at the moment she is NG fed which is nasogastric tube, it a tube that goes up her nose down the back of her throat down in to her belly to feed her she been fed like this since middle of January since she was diagnosed,
I am Rhian Lilly-may mother, welcome to our little brave fighting angel Lilly-may page, we what to try and raise as much as we can for us to do Lilly-mays very own sensory room, to get some sensory toys and get carl marshall in from Marshall Nightsky Ceilings to do his wonderful work of the night sky and stars on Lilly-may ceiling as she spends most the time on the floor looking up so it give her something to look at when she playing, here is a little bit about Lilly-may, lilly-may has to have a special feeding chair as she got no head control and keeps going forward with her head and making her be sick has she got bad reflex, and she also got to have a special pram as well to help her with her head control and positioning, also she got to have a standing frame as well to help her keeping her leg strength as there is a possibility that she might not walk but with the standing frame they can try and get her use to being in the standing position, and also she needs a special seat for the bath as well, and she have had her MRI results back and it come back that she has got leukodystrophy which I white matter on the brain is not working as it should be doing (google it would be better to get more stuff about this if you want o know more ), so we still waiting on more blood results that was taken before she had this MRI scan, so when they come back then we will know more about this leukodystrophy and what can be done if anything can be done, she got to have another MRI scan in 3 months time to she where lilly-may is at with this leukodystrophy, She was diagnosed with Silent aspiration back in January this year and cause of this she is a good few months be hide what other children should be at her age she is 16months but she is lie a new born baby, she cant sit up on her own crawl roll over walk or talk or anything else she should be doing for a child that's 16 months of age, because she got this silent aspiration this occurs in people that have swallowing problems, which is known as dysphagia. Aspiration is when food, liquids, or stomach contents are swallowed poorly, and go into the lungs by mistake. Usually when this happens, normal healthy people will turn red and start to cough, as an attempt to get it out of the lungs (think about yourself, when "something goes down the wrong pipe"). However, as people get weak and swallowing worsens, this aspiration can happen silently which means there will be no signs showing that this has occurred. In other words, you will not see any coughing, choking, or turning red.
Aspiration is dangerous because the food/liquids/stomach contents enter into the lungs, which is very irritating. It can develop into an aspiration pneumonia, which is very hard to treat, even with multiple antibiotics. She is due to have a operation but the waiting list is 1-2 years waiting list and she only been put on this list in may this year, now this operation is for her to have Percutaneous endoscopic gastrostomy (PEG) here is a little bit about what PEG is about means for you to know what we talking about, It is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate (for example, because of dysphagia or sedation). This provides enteral nutrition (making use of the natural digestion process of the gastrointestinal tract) despite bypassing the mouth; enteral nutrition is generally preferable to parenteral nutrition (which is only used when the GI tract must be avoided). The PEG procedure is an alternative to open surgical gastrostomy insertion, and does not require a general anesthetic; mild sedation is typically used. PEG tubes may also be extended into the small intestine by passing a jejunal extension tube (PEG-J tube) through the PEG tube and into the jejunum via the pylorus
PEG administration of enteral feeds is the most commonly used method of nutritional support for patients in the community. Many stroke patients, for example, are at risk of aspiration pneumonia due to poor control over the swallowing muscles; some will benefit from a PEG performed to maintain nutrition. PEGs may also be inserted to decompress the stomach in cases of gastric volvulus. because at the moment she is NG fed which is nasogastric tube, it a tube that goes up her nose down the back of her throat down in to her belly to feed her she been fed like this since middle of January since she was diagnosed,
Organizer
Ann Jd
Organizer
