Another "heart mom" is having an event where she shares other "heart family" stories, ours may be a little different in the beginning than most... but still, it is "our" story... the SHORT VERSION!
We met Jilliann (Jilly), at 5wks. old. She was in our local hospital and in need of many things... one being a loving family who could deal with her medical issues AND give her all the love that she deserved. Within a week, our family agreed that WE, were that family...
Jilly was born January 5th, 2007 with HLHS, a CLEFT PALATE, SEVERE HYPOTONIA (low muscle tone) due to neuromuscular issues, and very bad digestive issues. She was diagnosed in utero, as having the heart defect so she was born in Philadelphia. At 3 days old, Jilly had her 1st open heart surgery, she did not do well with the healing process and pain control, she also required alot of pacing to keep her heart in rythem but eventually she overcame these things. She had her 1st abdominal surgery at 3wks. old to place a g-tube for feeding and she had the nissan fundoplication (to wrap her stomach around her esophagus to prevent reflux). Jilly went home from Philadelphia at 4wks. old, but was admitted to our local hospital a few days later with severe weight loss. She was severly dehydrated, and it was determined that she most likely had not received any nutrition during this period. She was then, abandoned in our local hospital (in child protective's terms). It was then, that "our" story begins...
We met Jilly on Feb. 15th 2007... on Feb. 19th she was placed into our custody and our "LOVE" story begins. Also, our journey into the "HEART WORLD" began... one that noone can be prepared for, until they experience it. Within a week, we were headed to Philadelphia to adress the "cyanotic episodes" Jilly was having. Noone was sure, what was the cause but we knew that Jilly would desat. and brady during these episodes. In the next year, we spent a large part of Jilly's life, and ours... at CHOP. We learned that she was having reflux and retching episodes, sometimes up to 30 time/day.
Jilly had her second open heart surgery at 6mo. old. This too, was a rough time for Jilly. We learned that it is not unusual for children with neuromuscular issues to heal slower, or to not deal with pain as well. She was put on Phenobarb to calm her brain, and then things improved. It was a month stay at CHOP.
At 14mo. old, Jilly was again admitted for GI issues. She was also scheduled for her Cleft Palate surgery... the doctors went ahead with the surgery on Feb. 19th, she then caught the adnovirus which caused her to lose alot of wgt. She put put on TPN for nutruition... this required a Broviac (central line) to be placed in her leg. The next day, the line came apart and it is believed that air entered her blood stream and went to her brain... On March 1st 2008, Jilly suffered a stroke to the Right Frontal Lobe of her brain. She lost all use of her Left side. Jilly spent the next yr. regaining the use of her Left side. And on Jan. 5th, 2010 Jilly started walking at the age of 3yrs old.
On April 18th, 2010... we headed to CHOP again for yet another open heart surgery, the 3rd of her 3 planned surgeries. Once Jilly was open up by the surgeon, it was realized that the bulging Aorta that we knew she had... was much worse than anticipated! The only choice was, to replace Jilly's Aorta and postpone the Fontan completion until next year. After the surgery, Jilly developed severe GI issues yet again, and underwent several surgeries to help her... over a 10wks. period.
Today, Jilly is home... she continues to be on oxygen since her last openheart surgery. It was hoped that Jilly could wait a yr. to have her next surgery. But, it has been decided by Jilly's cardiologist and surgeon that she needs the surgery sooner. We are waiting for the dates, but the surgery is expected to take place in Oct. of this yr., just 6mo. after her last one.
We hope that this will be her 4th and final surgery, as 4 open heart surgeries before the age of 4yrs. old... seems like enough!!! Jilly continues to suffer from severe GI issues, and is fed into a J-tube going directly into her intestines.
Jilly is a fighter, a warrior, and a stroke survivor. We love her, and will continue this journey whererever it takes us. No matter what, she is our perfect little daughter!!! Thanks for reading our "story"...
See others stories at: http://www.whenlifehandsyouabrokenheart.blogspot.com/
Tuesday, August 24, 2010
Wednesday, May 26, 2010
Sildenafil/Viagra use in children with HLHS
Improving Blood Flow After Surgery to Treat Hypoplastic Left Heart Syndrome,
Children’s Hospital researchers are close to completing a study on the use of a medication called Sildenafil as a
complement to a three-stage surgical intervention to treat complex congenital heart disease, such as
hypoplastic left heart syndrome (HLHS) — a disease in which babies are born with an underdeveloped left side of
their heart. HLHS, and other forms of complex single-ventricle heart disease, are universally fatal without surgery.
To correct this defect, a series of three open-heart surgical procedures — pioneered at Children’s Hospital of
Philadelphia and now utilized worldwide — are performed to properly direct blood flow to the lungs and body.
While these procedures are lifesaving, survivors typically have a diminished capacity to exercise and may develop
secondary problems in other organs, such as the lungs and liver. Truly long-term outcomes are unknown at this
time.
David Goldberg, M.D., along with several other Cardiac Center physician-scientists in a group led by Jack Rychik,
M.D., is completing a ground-breaking study to improve on these outcomes. Sildenafil, which is currently approved
by the Food and Drug Administration to treat high blood pressure in the lungs in adults, is being studied to assess its
impact in this complex congenital heart defect. The Cardiac Center staff expects that treatment with Sildenafil
will improve the exercise ability and overall quality of life in patients with HLHS and other forms of single-ventricle
heart disease.
A significant gift from Mr. and Mrs. Mark Harrington has given Goldberg and collaborators the chance to test this
hypothesis in a pilot study here at the Cardiac Center, the first of its kind. Should preliminary information suggest
that this new approach to treatment is beneficial, it would lay the groundwork for further large-scale,
multi-institutional research. HLHS and other forms of single-ventricle heart disease affect nearly 1,000 children
each year, and there are an estimated 20,000 children and young adults who might benefit from this new approach.
Children’s Hospital researchers are close to completing a study on the use of a medication called Sildenafil as a
complement to a three-stage surgical intervention to treat complex congenital heart disease, such as
hypoplastic left heart syndrome (HLHS) — a disease in which babies are born with an underdeveloped left side of
their heart. HLHS, and other forms of complex single-ventricle heart disease, are universally fatal without surgery.
To correct this defect, a series of three open-heart surgical procedures — pioneered at Children’s Hospital of
Philadelphia and now utilized worldwide — are performed to properly direct blood flow to the lungs and body.
While these procedures are lifesaving, survivors typically have a diminished capacity to exercise and may develop
secondary problems in other organs, such as the lungs and liver. Truly long-term outcomes are unknown at this
time.
David Goldberg, M.D., along with several other Cardiac Center physician-scientists in a group led by Jack Rychik,
M.D., is completing a ground-breaking study to improve on these outcomes. Sildenafil, which is currently approved
by the Food and Drug Administration to treat high blood pressure in the lungs in adults, is being studied to assess its
impact in this complex congenital heart defect. The Cardiac Center staff expects that treatment with Sildenafil
will improve the exercise ability and overall quality of life in patients with HLHS and other forms of single-ventricle
heart disease.
A significant gift from Mr. and Mrs. Mark Harrington has given Goldberg and collaborators the chance to test this
hypothesis in a pilot study here at the Cardiac Center, the first of its kind. Should preliminary information suggest
that this new approach to treatment is beneficial, it would lay the groundwork for further large-scale,
multi-institutional research. HLHS and other forms of single-ventricle heart disease affect nearly 1,000 children
each year, and there are an estimated 20,000 children and young adults who might benefit from this new approach.
Friday, March 26, 2010
Speech issues:
I am reading a book called THE LATE TALKER, I have not gotten too far into the book yet... but I have learned a lot about Speech Disorders. Unfortunately, I am beginning to believe that Jilly was dealing with a Speech Disorder, long before her Stroke...
Jilly was born with a cleft palate, so she qualified for speech therapy through Early Intervention... immediately. She started therapy at a very young age, but did not progress very well, in her first 14mo. prior to her stroke.
Jilly was born with severe hypotonia, BUT, due to her multiple birth defects... mainly her heart defect HLHS, and her Cleft Palate, ALONG with the fact that Jilly was born in, an out-of-state hospital to biological parents who did not participate, neglected her, did not forward her medical records to their home town doctors, and basically abandoned her... the diagnosis of severe hypotonia did not follow her to our local town, where I first met Jilliann at 5wks. old.
When I met Jilly, the only diagnosis's that we had, were the HLHS and CLEFT PALATE... I also noticed that she had a recessed jaw, and inquired... I was told, that she obviously has an issue with the jaw called Micrognathia, meaning shortened jaw bones. I was told that this is something that some are born with, and that the jaw bones are the last bones in the face to fully grow... therefore, it is not until the age of about 18yrs. old, that a plastic surgeon would consider fixing and extending the jaw bones, if desired. Although Jilliann's micrognathia was quite noticable, I was told that there were more severe cases, that cause difficulty with breathing... and those cases sometimes require surgery or traching to deal with the breathing issues... but that it was not suspected that Jilliann's was this severe. Jilliann did have rather low oxygen levels, even for a HLHS baby... it was discussed that possibly, the low oxygen levels were somewhat effected by the Micrognathia, but not likely. Jilliann has also, always struggled with lower oxygen levels while laying down or sleeping, some babies with Micrognathia have issues with their tongue being positioned too far back in their throat, and, as they fall asleep and the tongue relaxes, it can fall back in the throat and partially block the airway, but that too... was questioned, but not suspected to be the cause, of her low oxygen levels... it was thought more so, to be a heart issue. I was told that she was just one of those babies, that was effected positionally... when it came to her heart function and blood flow to the pulmonary artery on the left side (which is highly compressed by a severely bulging Aorta... due to the stretching of the Aorta and Gortex patch, that was used to enlarge her severally underdeveloped Aorta). I also questioned a syndrome that I was aware of, Pierre Robin Syndrome... which consists of the Cleft Palate AND the Micrognathia, but I never got a definitive answer on whether Jilliann was considered to have this syndrome.
I spent the rest of her first year, on a quest to get more information, on what exactly was noticed/diagnosed, at birth... after much searching, along with the fact that a neurologist was called in, during her 6mo. heart surgery recovery... due to the fact that Jilly was not recovering well, not responding to pain meds. or sedation, and we were not able to calm her for several weeks after the surgery... much beyond the normal recovery period. It was then, that I was asked if Jilliann was diagnosed at birth with Hypotonia. Not being her birth parent, and not knowing if there was any diagnosis of this, at birth... we started searching for her birth records and sure enough... her very first exam after birth, stated: FLOPPY BABY. This term, is used for babies lacking the normal muscle tone. While talking with the neurologist, and discussing what we had noticed since the time that we had known Jilliann... it became a definite diagnosis that Jilliann was in fact, born with severe Hypotonia... these children are very floppy, as if you are carrying a wet noodle/a rag doll/ a sleeping child who does not resist the pull of gravity on their body. I had no idea, what this diagnosis meant... the Neurologist also did an ultrasound of Jilly's muscles... it was confirmed that Jilly had abnormal muscle mass. It was explained to me, to imagine the muscle as many many little strings all tightly tied together... leaving very little gaping... hypotonia is caused by muscles that do not have this tight weave of strings.... there are gaps, and therefore the muscles are not as dense and not as effective at their job. One thing I was not told, is that this does not mean that the muscle, necessarily is weak. Tone and Strength are two different things... I did not know this though.
So, due to the hypotonia (low tone)... I was told that babies do not recover as well after surgeries... it was recommended, to put Jilly on something to calm her brain, and that would help her recover better. Jilliann was put on Phenobarbitol, for this purpose... and it did seem to do the trick. Eventually, Jilly was able to calm down, relax, and sleep... and that was when her body was able to heal and recover. Once things improved, she was slowly weaned off of the Phenobarb., and once finished... she was able to go home. It was a very long month of hospitalization, recovering from her second open heart surgery. I also, found in her hospital records, that she experienced the same type of delayed recovery in the first 4wks. of life... now explained by this "HYPOTONIA".
What I am learning from this book I am reading, is that Hypotonia can play a big part in Speech Disorders... it was assumed that Jilly's "SPEECH DELAY" in her first year of life, was only due to her Cleft Palate... as no one really knew or understood the complexity of the diagnosis: Hypotonia. I am also learning from this book, that studies have proven that Speech Disorders can be hereditary. I am aware that one of Jilly's birth parents, was diagnosed with significant learning disorders in school, and received special education services, until dropping out of high school... One thing, I want to clarify is: Speech Disorders, do not mean that the person is cognitively delayed... in fact, it has been proven recently... that a large amount of people diagnosed with Speech Disorders... are advanced in their receptive abilities, meaning that they completely understand what is being said to them, and know exactly what they want to say... they just cannot verbalize, their knowledge. Unfortunately, it is common to be misdiagnosed as cognitively impaired... even to the point of being labeled as "retarded". And some, with Speech disorders have been diagnosed as Autistic... only because the child was not able to express himself verbally.
I have also noticed, that some of Jilliann's biological relatives, have very noticeable speech "issues", but I do not know their diagnosis's. What I am trying to express... is that there are many reasons, that a child does not talk... sadly, a lot of these issues are overlooked by doctors. What may be a SPEECH DISORDER, could just be diagnosed as a SPEECH DELAY; and there seems to be a major difference between the two! This book, is explaining those differences... in hopes of educating the reader... who commonly is the mother, that spends the most time with the child and may notice signs of a "DISORDER"... that possibly, no one else may notice.
I think that a big problem in getting the correct diagnosis... is that not everyone has ALL the pieces of the puzzle. It is a result of having TWO, wonderful speech therapists throughout Jilliann's life... and reading this book; that I feel as though, I have just realized how all of the pieces of Jilliann's puzzle... fit together.
The first two chapters of this book, were VERY depressing to read... they focused on the results, of how horribly the child will be effected by undiagnosed SPEECH DISORDERS. It didn't really even say "undiagnosed"... it just said many statistics, of how SPEECH DISORDERS can ruin a child's life... and that the results would be an adult that is not able to function in society or have friends. It even went on to say... that the likelihood of the child growing up and ending up in prison or worse yet... committing suicide is what to expect. I felt a bit angry, thinking that they were saying that there is no hope for a child with a true SPEECH DISORDER. But, I am willing to accept, that what the authors are trying to bring out... is the importance of a correct diagnosis.
So many parents, are not willing to accept when their child is 1,2,or 3 yrs. old... that they may have a issue, and that they may need some speech therapy. No parent, wishes to have their child diagnosed with a problem/delay/ or worse yet... a DISORDER!!! We do not want our child, to start out life... with a LABEL!!! Therefore, many parents who see signs of trouble... will not search out help. Or, they do inquire... and are told by others including doctors; that their child will catch up, and not to worry about it.
The book is trying to reach those people that may be in denial. Basically, it is trying to scare people into taking action. I personally, felt that it was a bit brutal... and for someone reading the book, who is already aware that there is a definite problem with severe speech delay... it was almost a bit hurtful, making the parent feel as there is "no hope" for a child who truly has a SPEECH DISORDER; to ever have a successful life. If, I had not already accepted, that Jilly has a serious issue with her speech... I do believe, that I would of quit reading the book after the first two chapters... and thrown the book away! BUT, because I have accepted that Jilly is going to have a difficult road, when it comes to speech.... I felt that I owed it to her, to continue reading this book... in hopes to educate myself in any way possible... if just one sentence in this book, can help Jilly... then I am willing to read it!!! Chapter two ends, by saying: "There is nothing to be lost and everything to be gained from early therapy. Perhaps your child is a late bloomer and will catch up with his peers. On the other hand, he may not have a speech delay but a speech disorder, and by obtaining therapy you will have gained a vital time advantage. You need to be prepared if this is the situation. In the next chapter, therefore, we outline the specific speech disorders. We tell you what is known about their origins and how to identify them. As a parent you are more familiar with your child than anyone and need to be armed with this information so that, if necessary, you can take appropriate action."
That being said... I did continue reading the book and have now completed chapter 3. It was this chapter... that I have learned the most from! I am glad, that I went on... I do think this book has a lot to teach me... and I hope, that it not only helps me come up with the correct diagnosis for my little girl... but will also give me great HOPE, of how early therapy/treatment WILL PREVENT the awful outcomes that chapter 2 spoke of !!!
I will have to stop here for tonight... but stay tuned, as I read through this book! I am hoping, that by educating myself on SPEECH ISSUES, I will be able to educate others... I could not be the only person looking for answers, on diagnosis and treatment. And, I will not be the last... YOU may be just starting out, maybe with your newborn baby who has yet to create their pieces of the puzzle! Knowing from the start, what I am learning 3yrs. down the road... may prevent the questions that I have struggled to answer! Nothing would make me happier, than to help someone know what to look for as it is happening... know what questions to ask... and know where to find the answers to those questions!!!
Jilly was born with a cleft palate, so she qualified for speech therapy through Early Intervention... immediately. She started therapy at a very young age, but did not progress very well, in her first 14mo. prior to her stroke.
Jilly was born with severe hypotonia, BUT, due to her multiple birth defects... mainly her heart defect HLHS, and her Cleft Palate, ALONG with the fact that Jilly was born in, an out-of-state hospital to biological parents who did not participate, neglected her, did not forward her medical records to their home town doctors, and basically abandoned her... the diagnosis of severe hypotonia did not follow her to our local town, where I first met Jilliann at 5wks. old.
When I met Jilly, the only diagnosis's that we had, were the HLHS and CLEFT PALATE... I also noticed that she had a recessed jaw, and inquired... I was told, that she obviously has an issue with the jaw called Micrognathia, meaning shortened jaw bones. I was told that this is something that some are born with, and that the jaw bones are the last bones in the face to fully grow... therefore, it is not until the age of about 18yrs. old, that a plastic surgeon would consider fixing and extending the jaw bones, if desired. Although Jilliann's micrognathia was quite noticable, I was told that there were more severe cases, that cause difficulty with breathing... and those cases sometimes require surgery or traching to deal with the breathing issues... but that it was not suspected that Jilliann's was this severe. Jilliann did have rather low oxygen levels, even for a HLHS baby... it was discussed that possibly, the low oxygen levels were somewhat effected by the Micrognathia, but not likely. Jilliann has also, always struggled with lower oxygen levels while laying down or sleeping, some babies with Micrognathia have issues with their tongue being positioned too far back in their throat, and, as they fall asleep and the tongue relaxes, it can fall back in the throat and partially block the airway, but that too... was questioned, but not suspected to be the cause, of her low oxygen levels... it was thought more so, to be a heart issue. I was told that she was just one of those babies, that was effected positionally... when it came to her heart function and blood flow to the pulmonary artery on the left side (which is highly compressed by a severely bulging Aorta... due to the stretching of the Aorta and Gortex patch, that was used to enlarge her severally underdeveloped Aorta). I also questioned a syndrome that I was aware of, Pierre Robin Syndrome... which consists of the Cleft Palate AND the Micrognathia, but I never got a definitive answer on whether Jilliann was considered to have this syndrome.
I spent the rest of her first year, on a quest to get more information, on what exactly was noticed/diagnosed, at birth... after much searching, along with the fact that a neurologist was called in, during her 6mo. heart surgery recovery... due to the fact that Jilly was not recovering well, not responding to pain meds. or sedation, and we were not able to calm her for several weeks after the surgery... much beyond the normal recovery period. It was then, that I was asked if Jilliann was diagnosed at birth with Hypotonia. Not being her birth parent, and not knowing if there was any diagnosis of this, at birth... we started searching for her birth records and sure enough... her very first exam after birth, stated: FLOPPY BABY. This term, is used for babies lacking the normal muscle tone. While talking with the neurologist, and discussing what we had noticed since the time that we had known Jilliann... it became a definite diagnosis that Jilliann was in fact, born with severe Hypotonia... these children are very floppy, as if you are carrying a wet noodle/a rag doll/ a sleeping child who does not resist the pull of gravity on their body. I had no idea, what this diagnosis meant... the Neurologist also did an ultrasound of Jilly's muscles... it was confirmed that Jilly had abnormal muscle mass. It was explained to me, to imagine the muscle as many many little strings all tightly tied together... leaving very little gaping... hypotonia is caused by muscles that do not have this tight weave of strings.... there are gaps, and therefore the muscles are not as dense and not as effective at their job. One thing I was not told, is that this does not mean that the muscle, necessarily is weak. Tone and Strength are two different things... I did not know this though.
So, due to the hypotonia (low tone)... I was told that babies do not recover as well after surgeries... it was recommended, to put Jilly on something to calm her brain, and that would help her recover better. Jilliann was put on Phenobarbitol, for this purpose... and it did seem to do the trick. Eventually, Jilly was able to calm down, relax, and sleep... and that was when her body was able to heal and recover. Once things improved, she was slowly weaned off of the Phenobarb., and once finished... she was able to go home. It was a very long month of hospitalization, recovering from her second open heart surgery. I also, found in her hospital records, that she experienced the same type of delayed recovery in the first 4wks. of life... now explained by this "HYPOTONIA".
What I am learning from this book I am reading, is that Hypotonia can play a big part in Speech Disorders... it was assumed that Jilly's "SPEECH DELAY" in her first year of life, was only due to her Cleft Palate... as no one really knew or understood the complexity of the diagnosis: Hypotonia. I am also learning from this book, that studies have proven that Speech Disorders can be hereditary. I am aware that one of Jilly's birth parents, was diagnosed with significant learning disorders in school, and received special education services, until dropping out of high school... One thing, I want to clarify is: Speech Disorders, do not mean that the person is cognitively delayed... in fact, it has been proven recently... that a large amount of people diagnosed with Speech Disorders... are advanced in their receptive abilities, meaning that they completely understand what is being said to them, and know exactly what they want to say... they just cannot verbalize, their knowledge. Unfortunately, it is common to be misdiagnosed as cognitively impaired... even to the point of being labeled as "retarded". And some, with Speech disorders have been diagnosed as Autistic... only because the child was not able to express himself verbally.
I have also noticed, that some of Jilliann's biological relatives, have very noticeable speech "issues", but I do not know their diagnosis's. What I am trying to express... is that there are many reasons, that a child does not talk... sadly, a lot of these issues are overlooked by doctors. What may be a SPEECH DISORDER, could just be diagnosed as a SPEECH DELAY; and there seems to be a major difference between the two! This book, is explaining those differences... in hopes of educating the reader... who commonly is the mother, that spends the most time with the child and may notice signs of a "DISORDER"... that possibly, no one else may notice.
I think that a big problem in getting the correct diagnosis... is that not everyone has ALL the pieces of the puzzle. It is a result of having TWO, wonderful speech therapists throughout Jilliann's life... and reading this book; that I feel as though, I have just realized how all of the pieces of Jilliann's puzzle... fit together.
The first two chapters of this book, were VERY depressing to read... they focused on the results, of how horribly the child will be effected by undiagnosed SPEECH DISORDERS. It didn't really even say "undiagnosed"... it just said many statistics, of how SPEECH DISORDERS can ruin a child's life... and that the results would be an adult that is not able to function in society or have friends. It even went on to say... that the likelihood of the child growing up and ending up in prison or worse yet... committing suicide is what to expect. I felt a bit angry, thinking that they were saying that there is no hope for a child with a true SPEECH DISORDER. But, I am willing to accept, that what the authors are trying to bring out... is the importance of a correct diagnosis.
So many parents, are not willing to accept when their child is 1,2,or 3 yrs. old... that they may have a issue, and that they may need some speech therapy. No parent, wishes to have their child diagnosed with a problem/delay/ or worse yet... a DISORDER!!! We do not want our child, to start out life... with a LABEL!!! Therefore, many parents who see signs of trouble... will not search out help. Or, they do inquire... and are told by others including doctors; that their child will catch up, and not to worry about it.
The book is trying to reach those people that may be in denial. Basically, it is trying to scare people into taking action. I personally, felt that it was a bit brutal... and for someone reading the book, who is already aware that there is a definite problem with severe speech delay... it was almost a bit hurtful, making the parent feel as there is "no hope" for a child who truly has a SPEECH DISORDER; to ever have a successful life. If, I had not already accepted, that Jilly has a serious issue with her speech... I do believe, that I would of quit reading the book after the first two chapters... and thrown the book away! BUT, because I have accepted that Jilly is going to have a difficult road, when it comes to speech.... I felt that I owed it to her, to continue reading this book... in hopes to educate myself in any way possible... if just one sentence in this book, can help Jilly... then I am willing to read it!!! Chapter two ends, by saying: "There is nothing to be lost and everything to be gained from early therapy. Perhaps your child is a late bloomer and will catch up with his peers. On the other hand, he may not have a speech delay but a speech disorder, and by obtaining therapy you will have gained a vital time advantage. You need to be prepared if this is the situation. In the next chapter, therefore, we outline the specific speech disorders. We tell you what is known about their origins and how to identify them. As a parent you are more familiar with your child than anyone and need to be armed with this information so that, if necessary, you can take appropriate action."
That being said... I did continue reading the book and have now completed chapter 3. It was this chapter... that I have learned the most from! I am glad, that I went on... I do think this book has a lot to teach me... and I hope, that it not only helps me come up with the correct diagnosis for my little girl... but will also give me great HOPE, of how early therapy/treatment WILL PREVENT the awful outcomes that chapter 2 spoke of !!!
I will have to stop here for tonight... but stay tuned, as I read through this book! I am hoping, that by educating myself on SPEECH ISSUES, I will be able to educate others... I could not be the only person looking for answers, on diagnosis and treatment. And, I will not be the last... YOU may be just starting out, maybe with your newborn baby who has yet to create their pieces of the puzzle! Knowing from the start, what I am learning 3yrs. down the road... may prevent the questions that I have struggled to answer! Nothing would make me happier, than to help someone know what to look for as it is happening... know what questions to ask... and know where to find the answers to those questions!!!
Monday, March 22, 2010
Wednesday, March 10, 2010
A story of two very special ROSES...
http://fromawriterskitchen.blogspot.com/2010/03/working-title-hearts-and-roses-blog.html
A very dear facebook friend, and fellow blogger suggested something to me... she said: why don't we reach out to other communities, to spread awareness of the issues of CHD'S AND STROKES? I thought that sounded like a good idea, so I turned around and said... will you do a story on your blog about these issues... well, she gladly said "yes", I feel very honored that our friend Bonnie, has now spread awareness to others, who may of never heard of these issues... and she included Jilly and a precious little "heart friend", Izzy in her story... including pics! Thank You Bonnie!!!
From A Writer's Kitchen
Monday, March 8, 2010
Hearts and Roses
roy 1960
They named her Elizabeth Rose. She was exquisite. My ten-year-old self was so jealous of my best friend's new baby sister. I was also jealous of the large (by a child's measurement) play house in her backyard. There was a tiny front porch and window boxes and a rose bush planted on each side of the three steps leading up to the porch. The roses were pink. Mr. and Mrs. M. planned to have a large family and built that two-room playhouse to fuel the imagination of their children. There was an easel for drawing and lots of pencils and crayons. There was modeling clay refreshed every few weeks. And, what I liked most, a reading corner with two comfortable chairs.
The first time I saw Elizabeth Rose, she was wearing a sheer white dress (no onesies back then) and lying on a pale pink baby afghan. There were matching pink booties on her tiny feet. She had a lot of very dark hair. I wanted to hold her. Mrs. M. simply said "no, she's sick". She didn't look sick to me.
Elizabeth Rose never played in that wonderful little retreat. She died when she was not quite a month old. She was born with a heart defect. My mother told me, years later, that the doctors really didn't know how to treat Elizabeth's heart so they sent her home to die peacefully.
That was forty years ago. Today heart defects are still the most common birth defects. In the United States, approximately 1 out of 100 infants are born with heart defects every year. In most cases, scientists still do not know what causes an infant's heart to develop abnormally.
There are two little "roses" that have recently blossomed in my garden. They are:
Jillian Rose (Silly Jilly)Jilly is three years old. She's perfect in every way except for her heart. Jilly was born with a complex congenital heart defect (CHD) and suffered a stroke when she was fourteen months old.AND
McKenzie Rose (Izzy)
Izzy just turned two. Look at that face. It's the face of a toddler about to get into something that's probably a "no-no". Typical two-year old? Yes, in every way except for her heart. Izzy was born with CHD and Tetralogy of Fallot.
One never knows when these problems might strike very close to home. And, one of these "Roses" might grow up to be the scientist that discovers the cause. One might grow up to discover the cure. Regardless of what they do in the future, they most certainly deserve to grow up.
CHD awareness is very important for prospective parents because the sooner a CHD is discovered, the greater the chance of survival. While around 1% of all babies have CHDs, routine testing is still not done and babies are lost. If all new parents asked for a painless test called a pulse oximetry for their newborns, more CHDs would be caught and fewer babies lost. The pulse oximetry test doesn't actually detect the CHD but does lead to further testing (echocardiograms, heart ultrasounds, etc.).
Approximately twice as many children die from CHDs each year than from all childhood cancers combined, yet funding for pediatric cancer research is five times greater. All of this research needs to be generously funded and CHD research funds need to be greatly increased. That research is what will, hopefully, allow these precious little "Roses" to thrive, bloom and live to adulthood.
I like to keep my posts light and happy. However, I'm also interested in how my garden grows. I want to keep these little "Roses" growing and thriving for years to come. I'm hoping that awareness and research will lead to a whole garden of healthy little hearts!
Thankfully, most parents only have to rely on their family and friends for support in raising their children. Parents of chronically ill children find they need a much wider support system.
Please help me get this information out. Until recently, I had very little knowledge of the severity and frequency of CHDs. If my post helps just one family with an early diagnosis, I will be very grateful.
Support for Children's Heart Foundation is crucial to research into CHDs.
Support the Ronald McDonald House. It provides shelter to many of these children and their families. If there's one in your neighborhood, volunteer.
I'm told that most blood donations in the U.S. go to heart patients.
The March of Dimes also supports research into CHDs.
For more information, visit www.childrensheartfoundation.org
From congenital heart disease to childhood cancers to seizure disorders, research is ongoing and in many cases, seriously underfunded.
And, I'd be remiss in not pointing out that many of these parents continually face the insurance industry and what they will and will not cover.
A very dear facebook friend, and fellow blogger suggested something to me... she said: why don't we reach out to other communities, to spread awareness of the issues of CHD'S AND STROKES? I thought that sounded like a good idea, so I turned around and said... will you do a story on your blog about these issues... well, she gladly said "yes", I feel very honored that our friend Bonnie, has now spread awareness to others, who may of never heard of these issues... and she included Jilly and a precious little "heart friend", Izzy in her story... including pics! Thank You Bonnie!!!
From A Writer's Kitchen
Monday, March 8, 2010
Hearts and Roses
roy 1960
They named her Elizabeth Rose. She was exquisite. My ten-year-old self was so jealous of my best friend's new baby sister. I was also jealous of the large (by a child's measurement) play house in her backyard. There was a tiny front porch and window boxes and a rose bush planted on each side of the three steps leading up to the porch. The roses were pink. Mr. and Mrs. M. planned to have a large family and built that two-room playhouse to fuel the imagination of their children. There was an easel for drawing and lots of pencils and crayons. There was modeling clay refreshed every few weeks. And, what I liked most, a reading corner with two comfortable chairs.
The first time I saw Elizabeth Rose, she was wearing a sheer white dress (no onesies back then) and lying on a pale pink baby afghan. There were matching pink booties on her tiny feet. She had a lot of very dark hair. I wanted to hold her. Mrs. M. simply said "no, she's sick". She didn't look sick to me.
Elizabeth Rose never played in that wonderful little retreat. She died when she was not quite a month old. She was born with a heart defect. My mother told me, years later, that the doctors really didn't know how to treat Elizabeth's heart so they sent her home to die peacefully.
That was forty years ago. Today heart defects are still the most common birth defects. In the United States, approximately 1 out of 100 infants are born with heart defects every year. In most cases, scientists still do not know what causes an infant's heart to develop abnormally.
There are two little "roses" that have recently blossomed in my garden. They are:
Jillian Rose (Silly Jilly)Jilly is three years old. She's perfect in every way except for her heart. Jilly was born with a complex congenital heart defect (CHD) and suffered a stroke when she was fourteen months old.AND
McKenzie Rose (Izzy)
Izzy just turned two. Look at that face. It's the face of a toddler about to get into something that's probably a "no-no". Typical two-year old? Yes, in every way except for her heart. Izzy was born with CHD and Tetralogy of Fallot.
One never knows when these problems might strike very close to home. And, one of these "Roses" might grow up to be the scientist that discovers the cause. One might grow up to discover the cure. Regardless of what they do in the future, they most certainly deserve to grow up.
CHD awareness is very important for prospective parents because the sooner a CHD is discovered, the greater the chance of survival. While around 1% of all babies have CHDs, routine testing is still not done and babies are lost. If all new parents asked for a painless test called a pulse oximetry for their newborns, more CHDs would be caught and fewer babies lost. The pulse oximetry test doesn't actually detect the CHD but does lead to further testing (echocardiograms, heart ultrasounds, etc.).
Approximately twice as many children die from CHDs each year than from all childhood cancers combined, yet funding for pediatric cancer research is five times greater. All of this research needs to be generously funded and CHD research funds need to be greatly increased. That research is what will, hopefully, allow these precious little "Roses" to thrive, bloom and live to adulthood.
I like to keep my posts light and happy. However, I'm also interested in how my garden grows. I want to keep these little "Roses" growing and thriving for years to come. I'm hoping that awareness and research will lead to a whole garden of healthy little hearts!
Thankfully, most parents only have to rely on their family and friends for support in raising their children. Parents of chronically ill children find they need a much wider support system.
Please help me get this information out. Until recently, I had very little knowledge of the severity and frequency of CHDs. If my post helps just one family with an early diagnosis, I will be very grateful.
Support for Children's Heart Foundation is crucial to research into CHDs.
Support the Ronald McDonald House. It provides shelter to many of these children and their families. If there's one in your neighborhood, volunteer.
I'm told that most blood donations in the U.S. go to heart patients.
The March of Dimes also supports research into CHDs.
For more information, visit www.childrensheartfoundation.org
From congenital heart disease to childhood cancers to seizure disorders, research is ongoing and in many cases, seriously underfunded.
And, I'd be remiss in not pointing out that many of these parents continually face the insurance industry and what they will and will not cover.
Sunday, March 7, 2010
Should pics of our precious childrens scars/surgeries be posted for all to see???
I just read a very interesting posting, from an adult CHD'er. It was received by others, in many different ways... this is my thoughts on it:
Should we be posting pics of our children's scars and surgeries where EVERYONE can see them? Many adult CHD'ers are saying "NO"! The thought behind that is... our children will grow up to be hurt by what we thought was innocent. We are so proud of our children, we want what is best for them... and we by no means, EVER WANT TO CAUSE THEM PAIN OR GRIEF!!! It never crossed my mind, being that I did not grow up with computers... that when our children are older, friends or enemies will be able to access these things. And potential employers will be able to also. It is so sad, that we have to worry about these things... but obviously, we do! Adult CHD'ers are having trouble getting jobs, and even worse... getting medical insurance. That is so sad for me to think of... after all, we view our children as heroes... why wouldn't the rest of the world view them, the same way? I would want to think, that NO employer... would decide NOT to hire my child... because they see them as a liability, due to their heart defect!!! But, it seems that these are issues that our kids will grow up to experience. Oh, if I could change the world!!! But I can't... all I can do, is give my child the tools to survive in this world!
I myself, grew up with a horrible self image... I never weighed 100lbs. till I was in 10th grade, but... I thought I was fat! I was popular, but I never thought so! I always had boyfriends, but I felt unwanted! So, if I felt this bad as a girl growing up... I have to take these issues about my child seriously! After all, I will never know what she feels like to have those scars in the middle of her chest! I will never know what it feels like to put a bathing suit on or a prom dress... and be ashamed of those scars. To me, they are so beautiful... She is so beautiful!!! But what will she feel like? Who better, to get those answers from... than someone who truely knows?
I will have to think very hard, about the words of this adult CHD'er! I will have to learn more about the computer and if I can post things now, but be sure to never give them to the hands of someone who will abuse them. Can I post a movie to youtube now, erase it before she grows up... and not worry about it? I do not know that answer! If I write her name, somewhere on the web... can anyone google it and find it 10, 20 yrs. from now? I do not know this either?
I am talking about this, so that others in my shoes... who have never thought about these things until today... will have a chance to think about it now, and come up with their own best answers. I do not know, what the right answers are... all I know, is that it breaks my heart sometimes.... to think of how hard my Jilly's life will be someday. And I do not mean the physical limitations, I mean the mental ones. I will teach my daughter to be proud of herself, but you can not control your child's emotions! Yes, you can help them to grow up with a possitive self image... but that does not mean that others are not going to hurt our children with their horrible teasing, or hurt them as adults by refusing them a job based on their health issues. No, it is not legal... but really, will our children be able to prove that it is happening? No, not unless they meet some coward who openly tells them, this is why they are not hiring them... most cowards are not brave enough to do that!
So, from this day forward... I will try to figure out, what is best for my child! I want to give her every opportunity possible! And I do not want to hurt her!!!
Should we be posting pics of our children's scars and surgeries where EVERYONE can see them? Many adult CHD'ers are saying "NO"! The thought behind that is... our children will grow up to be hurt by what we thought was innocent. We are so proud of our children, we want what is best for them... and we by no means, EVER WANT TO CAUSE THEM PAIN OR GRIEF!!! It never crossed my mind, being that I did not grow up with computers... that when our children are older, friends or enemies will be able to access these things. And potential employers will be able to also. It is so sad, that we have to worry about these things... but obviously, we do! Adult CHD'ers are having trouble getting jobs, and even worse... getting medical insurance. That is so sad for me to think of... after all, we view our children as heroes... why wouldn't the rest of the world view them, the same way? I would want to think, that NO employer... would decide NOT to hire my child... because they see them as a liability, due to their heart defect!!! But, it seems that these are issues that our kids will grow up to experience. Oh, if I could change the world!!! But I can't... all I can do, is give my child the tools to survive in this world!
I myself, grew up with a horrible self image... I never weighed 100lbs. till I was in 10th grade, but... I thought I was fat! I was popular, but I never thought so! I always had boyfriends, but I felt unwanted! So, if I felt this bad as a girl growing up... I have to take these issues about my child seriously! After all, I will never know what she feels like to have those scars in the middle of her chest! I will never know what it feels like to put a bathing suit on or a prom dress... and be ashamed of those scars. To me, they are so beautiful... She is so beautiful!!! But what will she feel like? Who better, to get those answers from... than someone who truely knows?
I will have to think very hard, about the words of this adult CHD'er! I will have to learn more about the computer and if I can post things now, but be sure to never give them to the hands of someone who will abuse them. Can I post a movie to youtube now, erase it before she grows up... and not worry about it? I do not know that answer! If I write her name, somewhere on the web... can anyone google it and find it 10, 20 yrs. from now? I do not know this either?
I am talking about this, so that others in my shoes... who have never thought about these things until today... will have a chance to think about it now, and come up with their own best answers. I do not know, what the right answers are... all I know, is that it breaks my heart sometimes.... to think of how hard my Jilly's life will be someday. And I do not mean the physical limitations, I mean the mental ones. I will teach my daughter to be proud of herself, but you can not control your child's emotions! Yes, you can help them to grow up with a possitive self image... but that does not mean that others are not going to hurt our children with their horrible teasing, or hurt them as adults by refusing them a job based on their health issues. No, it is not legal... but really, will our children be able to prove that it is happening? No, not unless they meet some coward who openly tells them, this is why they are not hiring them... most cowards are not brave enough to do that!
So, from this day forward... I will try to figure out, what is best for my child! I want to give her every opportunity possible! And I do not want to hurt her!!!
Saturday, March 6, 2010
EQUALY DEVASTATING DIAGNOSIS
I have very little time to post, am headed to my Grandpa's 90Th birthday party. So, I am going to write some now... and plan to come back and add more later (hopefully today). Make sure you come back!!!
Your child has a CHD...
Your child had a STROKE...
In my opinion, those two diagnosis' are equally devastating to hear... I have heard both, so I think that my opinion is important!!!
Whichever you have heard, or if you have heard both... the feelings are so much the same! Very scary, confusing, devastating!
Once we learn more about the diagnosis... and begin to understand what it will mean in our lives... we all tend to head the same direction! We want to spread awareness, we want to support research, we want a prevention, we want an answer about WHY this happens way too often!
So, I believe that these two diagnosis' are intertwined!!! Our situation is, even more so... with both diagnosis, and I am finding others too!
So how can we join together to make a difference? There is already established, a "HEART" community, and same with the "STROKE" community. If we spread each other's words... what a difference we could make! And what is this all for? It is about protecting our children!!! There are so many tragedies out there, affecting our children... imagine if your child had a CHD, then suddenly they had CANCER too, or your child had a STROKE, but went undiagnosed with a CHD till later on, or your child has a CHD, then they have a STROKE too! Why wait, to support each other??? We have all, already learned... that it CAN HAPPEN TO YOU! So lets do all that we can, to support each other!!! That is my thoughts, at least!
Correct me if I am wrong (nicely please), but I think that the biggest thing the stroke community is trying to make people aware of... is that kids (baby's in utero/newborns/ infants/toddlers/ and so on) CAN HAVE STROKES!!! And the earlier the diagnosis, the better outcome (typically) diagnosis means delayed treatment... which results in permanent loss or difficulties, that could of been prevented.
Again, correct me if I am wrong... but the heart community wants to raise awareness that, 1 in 100 babies are born with some type of heart defect... and that these defects can go undetected, without tests to specifically look for the CHD. And some of those babies, will not survive because of the lack of diagnosis early on.
Yes, there are other issues we want to spread awareness about... but the bottom line is, we want to save parents and children from falling victim to these horrible outcomes.
So, if we go to our local hospital... and we ask them to be aware of one of the issues... how hard would it be, to mention the other too!!! Knowledge is the key to saving these children's lives, and preventing heartache for their parents!!!
So I ask you... however you are spreading awareness/raising funding/etc... Why not include both issues! After all, we know that there is very little funding for CHD research, and there is very little research being done for pediatric strokes... you could make a difference in so many lives!!!
I hope that others, will understand my desire to come together!!! Our children are all heroes, just on different paths... some paths are more alike than others... but we love them all the same!
Your child has a CHD...
Your child had a STROKE...
In my opinion, those two diagnosis' are equally devastating to hear... I have heard both, so I think that my opinion is important!!!
Whichever you have heard, or if you have heard both... the feelings are so much the same! Very scary, confusing, devastating!
Once we learn more about the diagnosis... and begin to understand what it will mean in our lives... we all tend to head the same direction! We want to spread awareness, we want to support research, we want a prevention, we want an answer about WHY this happens way too often!
So, I believe that these two diagnosis' are intertwined!!! Our situation is, even more so... with both diagnosis, and I am finding others too!
So how can we join together to make a difference? There is already established, a "HEART" community, and same with the "STROKE" community. If we spread each other's words... what a difference we could make! And what is this all for? It is about protecting our children!!! There are so many tragedies out there, affecting our children... imagine if your child had a CHD, then suddenly they had CANCER too, or your child had a STROKE, but went undiagnosed with a CHD till later on, or your child has a CHD, then they have a STROKE too! Why wait, to support each other??? We have all, already learned... that it CAN HAPPEN TO YOU! So lets do all that we can, to support each other!!! That is my thoughts, at least!
Correct me if I am wrong (nicely please), but I think that the biggest thing the stroke community is trying to make people aware of... is that kids (baby's in utero/newborns/ infants/toddlers/ and so on) CAN HAVE STROKES!!! And the earlier the diagnosis, the better outcome (typically) diagnosis means delayed treatment... which results in permanent loss or difficulties, that could of been prevented.
Again, correct me if I am wrong... but the heart community wants to raise awareness that, 1 in 100 babies are born with some type of heart defect... and that these defects can go undetected, without tests to specifically look for the CHD. And some of those babies, will not survive because of the lack of diagnosis early on.
Yes, there are other issues we want to spread awareness about... but the bottom line is, we want to save parents and children from falling victim to these horrible outcomes.
So, if we go to our local hospital... and we ask them to be aware of one of the issues... how hard would it be, to mention the other too!!! Knowledge is the key to saving these children's lives, and preventing heartache for their parents!!!
So I ask you... however you are spreading awareness/raising funding/etc... Why not include both issues! After all, we know that there is very little funding for CHD research, and there is very little research being done for pediatric strokes... you could make a difference in so many lives!!!
I hope that others, will understand my desire to come together!!! Our children are all heroes, just on different paths... some paths are more alike than others... but we love them all the same!
Wednesday, March 3, 2010
Infant&Childhood Stroke - Home
Infant&Childhood Stroke - Home
This is a really nice place to see info. about Infant/Childhood Strokes,
check it out!!!
This is a really nice place to see info. about Infant/Childhood Strokes,
check it out!!!
Therapy:
I am so so blessed to have wonderful therapists for Jilly!!! We have therapy every day, 2 on every day but Mondays. I will be lost someday, when Jilly goes to school and we do not have therapy at home each day. It is so exciting, to learn about their therapy skills!!! I think, when Jilly does go to school, I will be looking for a job somewhere in the school districts... working with these special children! It is so rewarding, to watch a special needs child learn... it does not matter if it is the traditional learning that most kids do, it is learning!!! I encourage every parent of special needs children... to find their child's special gifts, and push them to use those gifts the best that they can! We are so proud of Jilly!!! She may not talk or walk like most children... but she continues to amaze us every day! Her physical therapy skills are improving by 3months... every 6months. That is a really good rate, for all she has been through! And her skills in speech/special instruction, are unbelievable!!! When a child who has spent 1/3 of her life in the hospital, and 1/3 recovering... she truely has only had 1yr. of her 3yrs. to work on these skills! And yet, she can test in a 4yr. range for her receptive skills (she understands everything we say)! No, she does not talk with her mouth... but it is a rare moment, when we do not know what she is telling us!!! She signs and gestures anything she needs or wants to say! I ask our therapists to push her, as I know that it is for the better... and she truely enjoys being pushed!
Yes, I am bragging about my child... I am so proud of her, and I am so thankful to all the therapists who have worked with her... planting the seeds, for a successful life! So, this post is to say Thank you to Pat and Tina, for all of their hard work, love and compassion... to help my Jilly succeed!
My wish is that everyone with a special needs child... will find those special people, who really care and want the best for their child!!!
I am so proud, to be a mom of a SPECIAL child!!!
Yes, I am bragging about my child... I am so proud of her, and I am so thankful to all the therapists who have worked with her... planting the seeds, for a successful life! So, this post is to say Thank you to Pat and Tina, for all of their hard work, love and compassion... to help my Jilly succeed!
My wish is that everyone with a special needs child... will find those special people, who really care and want the best for their child!!!
I am so proud, to be a mom of a SPECIAL child!!!
Sunday, February 28, 2010
The day of the stroke...
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As I stood there, looking at my little girl and knowing that life had just gotten a whole lot harder for her... feeling like I had no answers for her questioning face. Feeling scared and alone, I sobbed... At that point, Jilliann began to scream... it was unlike any scream I had ever heard a child make! The only way, that I know how, to decribe it is... as if a woman is about to deliver her child, and is baring down (part scream/part groan) and very loud. I had no clue what she was doing, but I knew it was not right... I started yelling out of the room, saying "come back in, send a doctor, something is wrong". Her scream continued, as medical staff were running in the room and yelling to others to get the doctor. Then her body started jerking all over the place... I then, knew what was happening... Jilly was now having a seizure! At that point, I did not know that seizures are common with strokes. I did not understand why she was having a seizure. As the doctors were running into the room and surrounding her bed, I found myself stuffed in a corner at the head of her bed watching every detail of what was happening. It is a bit blurred, which I am thankful for... because I truely thought I was watching my child's death... a horrible, painful death. I remember looking around the room at one point, and seeing nurses and doctors with tears in their eyes, I thought for sure that there was NO hope.
JILLIANN SEIZED FOR A FULL HOUR... a full tonic clonic seizure... her color was a mottled blue and white, her chest and abdomen sucked in with every breath, that was being assisted with a bag and mask. At first, a doctor was assisting her breathing... then he handed it over to the man who comes to your hospital room each and every night... to make sure you have the correct O2 equipment, and your mask and bag. At that time, I did not know that he was a respiratory therapist, nor did I know that he was the most qualified person to assist Jilliann... I felt very confused about that, and could not understand a doctor allowing someone else to do something so important as to keep my Jilly breathing. The "man who came to help" held the mask tighter on her face, it appeared as if he was smothering her, vs. helping her... I started questioning him... but he was ignoring me (I later realized, that he was concentrating on his job: to keep my Jilly breathing!!! ) Someone had to calm me and say... he knows what he is doing, he is the best! Her little body was lifting off of the bed uncontrollably, I remember a doctor, staring at the monitor and giving out orders for medications. And worst of all, I remember thinking... that it would be better for Jilly to die, than to continue to endure this seizure, that looked like it was going to tear her body in half. After about 45min., I pushed my way out of the corner and collapsed into one of my older son's arms and cryed out "what am I going to do, what am I going to do"??? I just could not imagine going on, with out my Jilliann!!!
Finally, the seizure stopped and the doctors rushed Jillian down to do a MRI of her brain. They wanted to see if she had another stroke, or a brain bleed. At this point she was unconscious, but breathing on her own. It seemed like a eternity, before they returned with the stroke team... to tell me that Jilly had two more stroke areas now. At that point, I believed that Jilliann would lay in a bed, unconscious, the rest of her life. I did not know another child, who had a stroke... it was something that I knew was possible for a "heart child", but I did not know that a child could survive one and ever have any quality of life again. I DID NOT KNOW HOW TO FIGHT THIS FIGHT!!!
I remember, talking to our Stroke Team Neurologist again... at that time, I had questions:
Would Jilliann survive this, would she ever wake up, would she ever do anything ever again, and I remember asking specifically: "How can she ever fight this?... She has been through so much already"! Well I will never forget what I was told... IT IS YOU, THAT NEEDS TO LEARN TO FIGHT THIS, JILLY ALREADY KNOWS HOW TO FIGHT... SHE HAS DONE THAT SINCE THE DAY SHE WAS BORN!!! Then our neurologist, gave me a hug... she probably does not know how much that meant to me... but it did give me hope!
I did not know how to fight something, when Jilly lay there semi-conscious for days... I just kept asking, "when will she wake up" and the answer was always, "her brain needs to rest". I knew they could not answer that question for me, although I had some wonderful talks with the Neurologist, who explained that babies/children's brains are amazing... they are still growing and maturing, and are even capable of compensating for a damaged area... hearing that from the Neurologist, did give me hope!
3 days later, Jilliann began to have seizures again... they were much more mild, but she was on antiseizure meds., more were added... and again, Jilly went down for another MRI of her brain. I feared the worst, that this was just a cycle of strokes until she could no longer live.
BUT... I WAS WRONG!!! Amazingly, with this MRI... we learned that no only did Jilly NOT have another stroke... but, the two areas that showed in the previous MRI, were no longer there. They could not explain it... maybe there was some type of shaddow on the previous scan... but what mattered is: Jilly only had ONE stroke area!!! (one is so much better than two or three, right!!!)
Within a week of the stroke, Jilly started to wake... she was extremely fussy, and did not find comfort in snuggling with me... like we used to do. It broke my heart, to think that maybe Jilly did not remember me! She had moaned and tossed her head back and forth for a week... she had rubbed all the hair off the back of her head (except the hair that grew, just above her neck). But slowly, I saw signs of my old Jilly... then she smiled for her big brother... that was the day I smiled again!!! And from that day on, I will never give up... like I had done! Jilly never gave up, she fought through it all, SHE KNEW HOW TO FIGHT, IT WAS ME THAT NEEDED TO LEARN HOW, AND IT WAS JILLY, WHO TAUGHT ME!
It has been a long journey, fighting back from this stroke... but together, we will do it!
Today, March 1st, 2010 is Jilly's 2yr. anniversary of her " LIVE DAY", the day she survived a stroke. Jilliann Rose, mommy could not be more proud of you! You are my HERO, and you have taught me so much! I love you Jilly, with all of my heart, I am sorry that you have had to endure such difficult things... but, I am here for you... I will fight for you, when you are too weak to fight... I will be there for you always! You are my precious rose, beautiful and amazing!!! Love, Mama
JILLIANN SEIZED FOR A FULL HOUR... a full tonic clonic seizure... her color was a mottled blue and white, her chest and abdomen sucked in with every breath, that was being assisted with a bag and mask. At first, a doctor was assisting her breathing... then he handed it over to the man who comes to your hospital room each and every night... to make sure you have the correct O2 equipment, and your mask and bag. At that time, I did not know that he was a respiratory therapist, nor did I know that he was the most qualified person to assist Jilliann... I felt very confused about that, and could not understand a doctor allowing someone else to do something so important as to keep my Jilly breathing. The "man who came to help" held the mask tighter on her face, it appeared as if he was smothering her, vs. helping her... I started questioning him... but he was ignoring me (I later realized, that he was concentrating on his job: to keep my Jilly breathing!!! ) Someone had to calm me and say... he knows what he is doing, he is the best! Her little body was lifting off of the bed uncontrollably, I remember a doctor, staring at the monitor and giving out orders for medications. And worst of all, I remember thinking... that it would be better for Jilly to die, than to continue to endure this seizure, that looked like it was going to tear her body in half. After about 45min., I pushed my way out of the corner and collapsed into one of my older son's arms and cryed out "what am I going to do, what am I going to do"??? I just could not imagine going on, with out my Jilliann!!!
Finally, the seizure stopped and the doctors rushed Jillian down to do a MRI of her brain. They wanted to see if she had another stroke, or a brain bleed. At this point she was unconscious, but breathing on her own. It seemed like a eternity, before they returned with the stroke team... to tell me that Jilly had two more stroke areas now. At that point, I believed that Jilliann would lay in a bed, unconscious, the rest of her life. I did not know another child, who had a stroke... it was something that I knew was possible for a "heart child", but I did not know that a child could survive one and ever have any quality of life again. I DID NOT KNOW HOW TO FIGHT THIS FIGHT!!!
I remember, talking to our Stroke Team Neurologist again... at that time, I had questions:
Would Jilliann survive this, would she ever wake up, would she ever do anything ever again, and I remember asking specifically: "How can she ever fight this?... She has been through so much already"! Well I will never forget what I was told... IT IS YOU, THAT NEEDS TO LEARN TO FIGHT THIS, JILLY ALREADY KNOWS HOW TO FIGHT... SHE HAS DONE THAT SINCE THE DAY SHE WAS BORN!!! Then our neurologist, gave me a hug... she probably does not know how much that meant to me... but it did give me hope!
I did not know how to fight something, when Jilly lay there semi-conscious for days... I just kept asking, "when will she wake up" and the answer was always, "her brain needs to rest". I knew they could not answer that question for me, although I had some wonderful talks with the Neurologist, who explained that babies/children's brains are amazing... they are still growing and maturing, and are even capable of compensating for a damaged area... hearing that from the Neurologist, did give me hope!
3 days later, Jilliann began to have seizures again... they were much more mild, but she was on antiseizure meds., more were added... and again, Jilly went down for another MRI of her brain. I feared the worst, that this was just a cycle of strokes until she could no longer live.
BUT... I WAS WRONG!!! Amazingly, with this MRI... we learned that no only did Jilly NOT have another stroke... but, the two areas that showed in the previous MRI, were no longer there. They could not explain it... maybe there was some type of shaddow on the previous scan... but what mattered is: Jilly only had ONE stroke area!!! (one is so much better than two or three, right!!!)
Within a week of the stroke, Jilly started to wake... she was extremely fussy, and did not find comfort in snuggling with me... like we used to do. It broke my heart, to think that maybe Jilly did not remember me! She had moaned and tossed her head back and forth for a week... she had rubbed all the hair off the back of her head (except the hair that grew, just above her neck). But slowly, I saw signs of my old Jilly... then she smiled for her big brother... that was the day I smiled again!!! And from that day on, I will never give up... like I had done! Jilly never gave up, she fought through it all, SHE KNEW HOW TO FIGHT, IT WAS ME THAT NEEDED TO LEARN HOW, AND IT WAS JILLY, WHO TAUGHT ME!
It has been a long journey, fighting back from this stroke... but together, we will do it!
Today, March 1st, 2010 is Jilly's 2yr. anniversary of her " LIVE DAY", the day she survived a stroke. Jilliann Rose, mommy could not be more proud of you! You are my HERO, and you have taught me so much! I love you Jilly, with all of my heart, I am sorry that you have had to endure such difficult things... but, I am here for you... I will fight for you, when you are too weak to fight... I will be there for you always! You are my precious rose, beautiful and amazing!!! Love, Mama
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Saturday, February 27, 2010
Jilly and her car
DID I SAY, JILLY WOULD OVERCOME HER FEARS OR WHAT!?! It took all day, but Jilliann has finally decided the fun of riding in her car... is better, than the fear of getting in, or the disappointment of not getting in! Hooray for Jilly, you did it!!!
Sensory issues and knowing where their bodies are in space:
I plan to finish the story, of the day of the stroke-March 1st, 2008... on March 1st 2010. I figured it was appropriate, being that it will be our 2yr. anniversary of "Jilly's Live Day". Most probably wonder what I mean by Live Day... well, in the military... when a soldier has a near death experience, and survives it... they call it a "Live Day". I figure that Jilliann deserves a day of her own, to call her "LIVE DAY", so March 1st it is!!!
I wanted to talk a little about one of the effects of the stroke: Jilly's stroke area, hit a bundle of nerves that give and receive messages. I was told in the beginning, that not only did she loose the use of her left side... but she no longer felt, or received messages from that side. As Jilly slowly regained use of her left side, one of my questions was: is she regaining feeling of that left side. The answer is a bit unclear, with a young child... as they cannot tell you what they feel, nor do they remember what "normal" felt like. So, I asked older kids... what it was like for them. I was told that typically, as they regain use... they also regain feeling, "in some sort of way". What I mean by that is, it may not feel "normal", but they do feel. That is obvious, with Jilliann... as she feels pain with a shot, or some other type of uncomfortable effect to the left side. But, the question is... does it feel normal over there? What I have learned is, at least in Jilly's case: that the problem area, is how that side of the body feels "in space". The signal to the brain, has a road block... the brain learns to compensate with other areas... but it does not mean, it is a normal connection. When we take a step... our brain automatically tells us exactly where we placed our foot... a stroke pt. may not feel that exactly right. Our experience with this is: that it makes Jilliann nervous... I think of it as if I was trying to walk steps in the dark, with no railing to hold on to... I would feel nervous, not seeing the next step... just as Jilly feels nervous, not feeling her step. I think the biggest reaction to that, we see with Jilly is, that she gets upset and cries... if she is set off balance in any way! An example is: we just bought a little ride in car by little tikes: the Coupe... we imagined her loving it... as she loves to be put in a clothes basket and pushed around a room. Well, it did not go as imagined... it was heart breaking to see: the slightest movement as she was excitedly climbing into the car... has scared her to the point, of not being able to get in it. She desperatly wants to, she will put her upper body in it, or she will stick her feet in through the door... but she can not bring herself, to put her full weight in it and depend on it for safety! The tears welled up inside of me, as I watched her cry... devestated at wanting to do it, but couldn't. Luckily, Jilly will overcome this (at least I think she will, as she usually doesn't give up). So far today, there is no tears... but she still cannot get in it. The day she accomplishes it, I WILL post a picture!!!
Please post comments, on your experience with this issue! Thanks for listening!
HEART/STROKE HUGS!!!
I wanted to talk a little about one of the effects of the stroke: Jilly's stroke area, hit a bundle of nerves that give and receive messages. I was told in the beginning, that not only did she loose the use of her left side... but she no longer felt, or received messages from that side. As Jilly slowly regained use of her left side, one of my questions was: is she regaining feeling of that left side. The answer is a bit unclear, with a young child... as they cannot tell you what they feel, nor do they remember what "normal" felt like. So, I asked older kids... what it was like for them. I was told that typically, as they regain use... they also regain feeling, "in some sort of way". What I mean by that is, it may not feel "normal", but they do feel. That is obvious, with Jilliann... as she feels pain with a shot, or some other type of uncomfortable effect to the left side. But, the question is... does it feel normal over there? What I have learned is, at least in Jilly's case: that the problem area, is how that side of the body feels "in space". The signal to the brain, has a road block... the brain learns to compensate with other areas... but it does not mean, it is a normal connection. When we take a step... our brain automatically tells us exactly where we placed our foot... a stroke pt. may not feel that exactly right. Our experience with this is: that it makes Jilliann nervous... I think of it as if I was trying to walk steps in the dark, with no railing to hold on to... I would feel nervous, not seeing the next step... just as Jilly feels nervous, not feeling her step. I think the biggest reaction to that, we see with Jilly is, that she gets upset and cries... if she is set off balance in any way! An example is: we just bought a little ride in car by little tikes: the Coupe... we imagined her loving it... as she loves to be put in a clothes basket and pushed around a room. Well, it did not go as imagined... it was heart breaking to see: the slightest movement as she was excitedly climbing into the car... has scared her to the point, of not being able to get in it. She desperatly wants to, she will put her upper body in it, or she will stick her feet in through the door... but she can not bring herself, to put her full weight in it and depend on it for safety! The tears welled up inside of me, as I watched her cry... devestated at wanting to do it, but couldn't. Luckily, Jilly will overcome this (at least I think she will, as she usually doesn't give up). So far today, there is no tears... but she still cannot get in it. The day she accomplishes it, I WILL post a picture!!!
Please post comments, on your experience with this issue! Thanks for listening!
HEART/STROKE HUGS!!!
Tuesday, February 23, 2010
Leading up to the stroke...
I am going to start with the month leading up to Jilly's stroke. Jilly had been hospitalized here in NY for GI issues... it was not uncommon for this to happen, with her severe reflux of both her upper and lower digestive system, and her delayed emptying system. At this point, we were unable to feed her into her g-j tube without severe pain; so she was started on IV fluids and all GI feedings were stopped. This always seemed to do the trick of settling things down, but unfortunatly as a cardiac pt., it is very difficult to place an IV... she had been receiving IV fluids for a few days, but each day required a new IV site. Unfortunatly, it got to a point where no one was able to find a good vein, and throughout a whole day, it was attempted 14 times... even the NICU doc at our local hospital could not get one started (trying even in the skull). After about 5hrs. of NO fluids, Jilly's body starts to react with her heart rate going sky high... it becomes critical at this point. So, it was decided that Jilliann needed to be transported to our cardiac hosp. in PA, CHOP. Unfortunatly, we were in the midst of a blizzard... CHOP has a transport team, that would typically arrive by helicoptor... but it was too windy, so they decided to send a leer jet instead... it would arrive at our local airport, then the transport team got in a ambulance and came to the AOMC to pick Jilly up. Because she was not critical at this point... I was able to fly with them...WOW, what a ride that was!!! It took them 30min. to arrive (going against the wind), and it took us 15min. to fly back to Philly (normally a 4-5hr. drive), and we even got to land sidewards! CHOP'S CICU (cardiac intensive care) nurses were able to get Jilly's IV started... they are the experts afterall, and all was well! The plan was to continue with IV fluids, then slowly start up her GI feeds, at a rate that she could tollerate. These things take a toll on Jilliann in the form of large weight loss, but she is strong, a fighter since birth... and she was well on the road to recovery.
Jilly was originally scheduled for her cleft palate surgery on Feb. 19th 2008, just a few weeks after our arrival at CHOP. It was decided, that she was strong enough to go ahead with the surgery... so we did. All seemed to go well, until she caught a virus (adenovirus) and again, her digestive system acted up... she screamed in pain every time we tried to feed her, so she had to go back on IV fluids. Unfortunatly, with all the previous weight loss and now again only being on IV fluids... she started loosing even more weight, and was becoming weaker and weaker over the next week. It was now time to consider placing a central line, so that she could receive feedings ( a regular IV will not work for this, the veins closer to the surface are smaller and the TPN {total parenteral nutrition} would irritate and burn the veins) so the last day of Feb. 2008, Jilly went into surgery to have a broviac placed into her leg. It was decided by cardiology, that putting a central line in the upper body was too dangerous for the heart... so the leg it was! The surgery went well, and that night the TPN was started by the surgeon.
The next day, was MARCH 1ST 2008... during that day, Jilly's central line came apart at one of its connections and as I picked her up out of bed... I found that her pj's were soaked with blood... I called for a nurse... everything was cleaned up and it was found that there was quite a puddle of blood in her bed also. The nurse hooked her line together and started running it, she also replaced the TPN with a new bag. It is very important that all of the air is extracted out of the line, so not to put air into the body's blood flow... shortly after all this happening that day... JILLY HAD A STROKE!!! We were sitting on the couch together, playing and trying to get Jilly to taste some food... when she started to tip over to one side repeatably... I thought that was odd, but there was nothing else unusual at this point. I decided to pick her up and lay her down, to check and see if anything was bothering her (it appeared like she was purposely leaning to one side) Well, as I layed Jilly down... the left side of her body flopped to the couch, as if she had no control over it. I picked her up and tried again, and the same thing happened. IT WAS AT THAT POINT, THAT I SUSPECTED THAT JILLY HAD, HAD A STOKE! I called the nurse in and said I want a doctor immediatly, I think Jilly had a stroke... before long, there was a team of doctors, examining Jilliann... she was sent down for a CT of the brain, we went back to our room and soon, a new team of doctors arrived "The StrokeTeam" , and they comfirmed what I had suspected... Jilly had a stroke!
I think I will stop here today... it was a devastating day, and just remembering it, is traumatic for me! I had no clue what the near future would bring at that point, it was going to get worse!
But, at that point... I did not think it could get worse, my little girl who had worked so hard to live, to acheive what she had, to this point... and with a bad heart and low muscle tone. It had
not been easy for Jilliann... she had endured 2 open heart surgeries, stomach surgery for a g-tube placement and nissan fundoplication, to help with her reflux. She had been hospitalized
3/4 of her life at that point, due to the heart and stomach issues. And had just recently had her cleft palate surgery... and NOW, SHE HAD A STROKE... I remember laying her down in bed, looking at her helpless little body, seeing her look up at me as if to say... why can't I sit up mommy? I started to cry, and said "my little girl had a stroke", why is life so hard for her, hasn't she had enough troubles and NOW THIS TOO! I felt so sad for her! Before the Stroke Team left, they asked me if I had any questions... at that point, I was numb... I was trying to accept that Jilliann had really had a stroke, it seemed like a bad dream! I said "no, I do not have any questions" and they told me they would be back tomorrow, and that they were available 24/7 if I needed to talk.
That was the end of the day, so I thought........ I CRIED!!!
Looking back, I learned four very important things that day...
1. On a central line, there are connections and ports... the connections should always be connected by what is called a secure loc... it gives extra security, that the line will not come apart... it is crutial that these are used. At the time, CHOP'S policy in the CICU, was to use
these on all central lines... but the step down unit, did not have this policy, nor did the hospital
as a whole! I have since, made sure that the policy is in place for the whole entire hospital... Please make sure it is in your hospital!!!
2. If a central line does come apart, in any way... ask for the surgeon to come inspect it, before it is ran again. The surgeon who placed Jilliann's line, feels that should of been done, but it was not! I did not feel right about the whole thing of just hooking it up and running it, but I did not know anything about central lines so I did not speak up. The surgeon could of done a ultrasound to verify there was no clots or air bubbles in her body before starting it back up.
3. You know your child best, if it does not feel right... speak up! I should of done so, when it came to going ahead with the cleft palate surgery... it was not a critical surgery, it could of been postponed... if your child is not up to par, and a surgery can wait, then wait!
4. Strokes are horrible, none of our kids should experience them... but looking back... it was not the end of her world! Yes, it was a major step backwards and yes it caused a lot of pain and sorrow... but it is survivable, and you can come out of it a better person! I did not know that, that particular day... but I do know that now!!!
Jilly was originally scheduled for her cleft palate surgery on Feb. 19th 2008, just a few weeks after our arrival at CHOP. It was decided, that she was strong enough to go ahead with the surgery... so we did. All seemed to go well, until she caught a virus (adenovirus) and again, her digestive system acted up... she screamed in pain every time we tried to feed her, so she had to go back on IV fluids. Unfortunatly, with all the previous weight loss and now again only being on IV fluids... she started loosing even more weight, and was becoming weaker and weaker over the next week. It was now time to consider placing a central line, so that she could receive feedings ( a regular IV will not work for this, the veins closer to the surface are smaller and the TPN {total parenteral nutrition} would irritate and burn the veins) so the last day of Feb. 2008, Jilly went into surgery to have a broviac placed into her leg. It was decided by cardiology, that putting a central line in the upper body was too dangerous for the heart... so the leg it was! The surgery went well, and that night the TPN was started by the surgeon.
The next day, was MARCH 1ST 2008... during that day, Jilly's central line came apart at one of its connections and as I picked her up out of bed... I found that her pj's were soaked with blood... I called for a nurse... everything was cleaned up and it was found that there was quite a puddle of blood in her bed also. The nurse hooked her line together and started running it, she also replaced the TPN with a new bag. It is very important that all of the air is extracted out of the line, so not to put air into the body's blood flow... shortly after all this happening that day... JILLY HAD A STROKE!!! We were sitting on the couch together, playing and trying to get Jilly to taste some food... when she started to tip over to one side repeatably... I thought that was odd, but there was nothing else unusual at this point. I decided to pick her up and lay her down, to check and see if anything was bothering her (it appeared like she was purposely leaning to one side) Well, as I layed Jilly down... the left side of her body flopped to the couch, as if she had no control over it. I picked her up and tried again, and the same thing happened. IT WAS AT THAT POINT, THAT I SUSPECTED THAT JILLY HAD, HAD A STOKE! I called the nurse in and said I want a doctor immediatly, I think Jilly had a stroke... before long, there was a team of doctors, examining Jilliann... she was sent down for a CT of the brain, we went back to our room and soon, a new team of doctors arrived "The StrokeTeam" , and they comfirmed what I had suspected... Jilly had a stroke!
I think I will stop here today... it was a devastating day, and just remembering it, is traumatic for me! I had no clue what the near future would bring at that point, it was going to get worse!
But, at that point... I did not think it could get worse, my little girl who had worked so hard to live, to acheive what she had, to this point... and with a bad heart and low muscle tone. It had
not been easy for Jilliann... she had endured 2 open heart surgeries, stomach surgery for a g-tube placement and nissan fundoplication, to help with her reflux. She had been hospitalized
3/4 of her life at that point, due to the heart and stomach issues. And had just recently had her cleft palate surgery... and NOW, SHE HAD A STROKE... I remember laying her down in bed, looking at her helpless little body, seeing her look up at me as if to say... why can't I sit up mommy? I started to cry, and said "my little girl had a stroke", why is life so hard for her, hasn't she had enough troubles and NOW THIS TOO! I felt so sad for her! Before the Stroke Team left, they asked me if I had any questions... at that point, I was numb... I was trying to accept that Jilliann had really had a stroke, it seemed like a bad dream! I said "no, I do not have any questions" and they told me they would be back tomorrow, and that they were available 24/7 if I needed to talk.
That was the end of the day, so I thought........ I CRIED!!!
Looking back, I learned four very important things that day...
1. On a central line, there are connections and ports... the connections should always be connected by what is called a secure loc... it gives extra security, that the line will not come apart... it is crutial that these are used. At the time, CHOP'S policy in the CICU, was to use
these on all central lines... but the step down unit, did not have this policy, nor did the hospital
as a whole! I have since, made sure that the policy is in place for the whole entire hospital... Please make sure it is in your hospital!!!
2. If a central line does come apart, in any way... ask for the surgeon to come inspect it, before it is ran again. The surgeon who placed Jilliann's line, feels that should of been done, but it was not! I did not feel right about the whole thing of just hooking it up and running it, but I did not know anything about central lines so I did not speak up. The surgeon could of done a ultrasound to verify there was no clots or air bubbles in her body before starting it back up.
3. You know your child best, if it does not feel right... speak up! I should of done so, when it came to going ahead with the cleft palate surgery... it was not a critical surgery, it could of been postponed... if your child is not up to par, and a surgery can wait, then wait!
4. Strokes are horrible, none of our kids should experience them... but looking back... it was not the end of her world! Yes, it was a major step backwards and yes it caused a lot of pain and sorrow... but it is survivable, and you can come out of it a better person! I did not know that, that particular day... but I do know that now!!!
Monday, February 22, 2010
Question: How do we know, what is related to what?
So today, is a very special day to me... it is the first time we took our baby girl home... 3yrs. ago! We were petrified of what we were about to learn... we had no clue at this point, that Jilly would be here with us 3 yrs. later... I am so thankful for these past 3yrs. I have learned so much, met so many new friends, and learned how to be strong, thanks to my little hero: Jilliann Rose!
Today, I am thinking about what Noah's mom mentioned... how do we know what is stroke related or CHD related? I find my self, asking our Physical Therapist that question all the time! Jilly also has neuromuscular issues, believed to be congenital; causing her to have hypotonia (low muscle tone) otherwise known as a "floppy baby". The only dx. we have so far is periphreal neuropathy (meaning the nerves coming from her spine to her limbs-arms and legs). So you take a child with a bad heart/and bad nerves/who has had a stroke/ and has spent 1/3 of her life in a hospital, another 1/3 home recovering... that only leaves 1/3 of her life, to work on developing in all areas of life...
So, how do we know???
I think maybe, we can't know... we can guess, asume, and sometimes even hope that a certain symptom is related to a certain cause... because that would be the better choice!
We have been blessed on one issue of stroke.. the" tightness", because of Jilly's "looseness" she was born with... it counteracts the tightness that should of been on the Left side of her body, making that side more like normal. But, the two sides of her body, are not equal... the right side being floppy from low tone. I cannot imagine if the two sides of our body... were so different, and yet our STROKE kids seem to learn to compensate... even to the point where only us and their therapists know the difference! Then there is the heart issue... is the weakness, because of fatigue due to low heart function or poor oxygen levels?
I think that must ALWAYS play some part in any issue. Who does not feel weak, when they are not feeling well!!! Jilly is 2 months away from heart surgery, the Fontan... I hear from more experienced moms, that I will see a difference in strength and endurance... along with better color... so I guess I will soon see, how much the heart... is making a difference!
What do you think???
Today, I am thinking about what Noah's mom mentioned... how do we know what is stroke related or CHD related? I find my self, asking our Physical Therapist that question all the time! Jilly also has neuromuscular issues, believed to be congenital; causing her to have hypotonia (low muscle tone) otherwise known as a "floppy baby". The only dx. we have so far is periphreal neuropathy (meaning the nerves coming from her spine to her limbs-arms and legs). So you take a child with a bad heart/and bad nerves/who has had a stroke/ and has spent 1/3 of her life in a hospital, another 1/3 home recovering... that only leaves 1/3 of her life, to work on developing in all areas of life...
So, how do we know???
I think maybe, we can't know... we can guess, asume, and sometimes even hope that a certain symptom is related to a certain cause... because that would be the better choice!
We have been blessed on one issue of stroke.. the" tightness", because of Jilly's "looseness" she was born with... it counteracts the tightness that should of been on the Left side of her body, making that side more like normal. But, the two sides of her body, are not equal... the right side being floppy from low tone. I cannot imagine if the two sides of our body... were so different, and yet our STROKE kids seem to learn to compensate... even to the point where only us and their therapists know the difference! Then there is the heart issue... is the weakness, because of fatigue due to low heart function or poor oxygen levels?
I think that must ALWAYS play some part in any issue. Who does not feel weak, when they are not feeling well!!! Jilly is 2 months away from heart surgery, the Fontan... I hear from more experienced moms, that I will see a difference in strength and endurance... along with better color... so I guess I will soon see, how much the heart... is making a difference!
What do you think???
Sunday, February 21, 2010
CHD WARRIORS / STROKE SURVIVORS
List: CHD WARRIORS/STROKE SURVIVORS:
I am happy to say, that I have made contact with other families who are willing to share their info. on this blog! I really think we can learn from each other, and support each other!
If anyone is interested in being added to the list... please let me know!
1. Charlie Grauber Jr. (Age: 2yrs. old )
CHD - HRHS, DILV / STROKE SURVIVOR
Mom of Charlie: Senalda Grauber (facebook)
Childrens Hospital of Philadelphia, PA.
Carepage: https://www.carepages.com/carepages/BabyCharlieGrauberJr
February 21 at 3:11pm.: By all means share Charlies information... I think that's a great idea... I remember what it felt like to be in this all alone... If it helps another family I'm all for it. Let me know if there's anything I can help with. Oh P.S. Huge heart hugs for starting the blog to support other heart families and expanding ours.
2. Noah Nero (2yrs.old )
CHD-HLHS / STROKE SURVIVOR
Mom of Noah: Cherish Nero (facebook)
All Childrens Hospital St. Petersburg, FL
Carepage: https://www.carepages.com/carepages/NoahsQuest
February 21 at 4:56pm.: His strokes are not something we really think much about anymore. They both happened within his first month of life. He spent so much time in the hospital for his first 18 months that we never knew if his delays/issues were stroke related or from being in the hospital. There was a time when he could not move the right side of his body. It is still not as strong as the left, but you would never really notice unless you sat in a therapy session with him. As a result of his strokes he has two brain infarcts - one on the left side and one on the right. In a way, I think we are very fortunate that they happened so early in his life. His body has compensated well for the infarcts. He is still remarkably delayed - but again...it's hard to tell if that is a result of extended life in the hospital or his brain. But feel free to post anything about him that may be helpful to other parents!
3. Jilliann Rose Kimble (Age: 3yrs. old )
CHD - HLHS, Double Outlet Right Ventricle, and Mitral Atresia varient / STROKE SURVIVOR
Carepage: https://www.carepages.com/carepages/SILLYJILLY07
Mom of Jilly:
Joy Proper Kimble (facebook)
Horseheads, NY /Childrens Hospital of Philadelphia, PA
blog: http://join-for-jilly.blogspot.com/
4. Susan Faith Jenness (Age: 2yrs. old )
CHD - double inlet single ventricle complex with ventricular inversion, hypoplastic left ventricle, transposition of the great arteries (TGA), ASD, remote VSD, severe aortic stenosis with a coarchtation of the aorta, and right aortic arch. / STROKE SURVIVOR
Mom of Susan: CandiceBayJenness (facebook)
Duluth, GA
Carepage: https://www.carepages.com/carepages/SusanFaiththeLittleMiracle
5. Bryton Maxim (Age: 16yrs. old )
CHD -transposition of the greater arteries, heart transplant/ STROKE SURVIVOR
Mom to Bryton: Terri Maxim
Children's Hospital Boston
Carepage: https://www.carepages.com/carepages/brytonmaxim
Posted Feb. 19, 2010 : After Bryton's heart transplant, he had a stroke. Actually, the transplant team believes that he may have had a smaller stroke just prior to the transplant while he was on the mechanical heart. I would love to be on the list. Bryton is doing so much better these days. He will never completely regain what he lost and that is so sad. It will be good to connect with others who have the same experience. Thanks for putting that out there for us.
6. Teri Benson (Age: 29yrs. old)
(CHD/STROKE SURVIVOR)
Elk Grove, CA
carepage being created, will update when complete
facebook: Teri Benson
e-mail: minnieweasel@gmail.com
February 22 at 12:20pm.: Hey Joy, Such a fantastic idea!!! You can definitely share my info with others. I remember how lost and alone I felt after I had my first stroke. If my story can make help one person feel less alone, it's worth it! Feel free to share any of my info.
7. Josie Ball (Age: 4 1/2 yrs. old)
(CHD / 2X STROKE SURVIVOR )
Mom to Josie: Melissa Martin Ball (facebook)
Danville, IL
Carepage: https://www.carepages.com/carepages/JosieBall
8. Owen Veloso (Age: 1 1/2 yrs. old)
CHD - HLHS / STROKE SURVIVOR
Mom to Owen: Laura Veloso (facebook)
Ontario, Canada
Carepage: https://www.carepages.com/carepages/OwenVeloso
Sick Kids Foundation (Hospital for Sick Children- Toronto, Ontario)
Dx: Hypoplastic Left Heart w/aortic atresia
Owen had his stroke at around 8 or 9 days old. He had arrested and was on ECMO at the time, so the exact day is unknown. As a result he has left side weakness. The stroke did not really effect Owen until it was time to start working on his physical development. It has been quite a struggle. Currently, Owen is 20months old and is still unable to walk. He only began to crawl at the beginning of the year, shortly after learning to get up into the sitting position on his own. He works with an occupational therapist and a physio therapist. Owen has shed many tears but his determination is astounding. On Feb. 16, 2010 he pulled himself to the standing position for the very first time!!! We do not have any doubts he will be walking soon.
9. Andrew Hirt (Age: 10 yrs.old)
CHD - HRHS, Tricuspid Atresia, Pulmonary Atresia and an ASD / STROKE SURVIVOR
Mom to Andrew: Carolyn Hirt (facebook)
Lees Summit, MO
Carepage: https://www.carepages.com/carepages/AndrewHirt
10. Lorelei Hoagland ( age:4yrs.)
CHD - HLHS / STROKE SURVIVOR
Mom to Lorelei: Nicole Haarmann Hoagland (facebook)
O'Fallon, MO
Carepage: https://www.carepages.com/carepages/Loreleih
I am happy to say, that I have made contact with other families who are willing to share their info. on this blog! I really think we can learn from each other, and support each other!
If anyone is interested in being added to the list... please let me know!
1. Charlie Grauber Jr. (Age: 2yrs. old )
CHD - HRHS, DILV / STROKE SURVIVOR
Mom of Charlie: Senalda Grauber (facebook)
Childrens Hospital of Philadelphia, PA.
Carepage: https://www.carepages.com/carepages/BabyCharlieGrauberJr
February 21 at 3:11pm.: By all means share Charlies information... I think that's a great idea... I remember what it felt like to be in this all alone... If it helps another family I'm all for it. Let me know if there's anything I can help with. Oh P.S. Huge heart hugs for starting the blog to support other heart families and expanding ours.
2. Noah Nero (2yrs.old )
CHD-HLHS / STROKE SURVIVOR
Mom of Noah: Cherish Nero (facebook)
All Childrens Hospital St. Petersburg, FL
Carepage: https://www.carepages.com/carepages/NoahsQuest
February 21 at 4:56pm.: His strokes are not something we really think much about anymore. They both happened within his first month of life. He spent so much time in the hospital for his first 18 months that we never knew if his delays/issues were stroke related or from being in the hospital. There was a time when he could not move the right side of his body. It is still not as strong as the left, but you would never really notice unless you sat in a therapy session with him. As a result of his strokes he has two brain infarcts - one on the left side and one on the right. In a way, I think we are very fortunate that they happened so early in his life. His body has compensated well for the infarcts. He is still remarkably delayed - but again...it's hard to tell if that is a result of extended life in the hospital or his brain. But feel free to post anything about him that may be helpful to other parents!
3. Jilliann Rose Kimble (Age: 3yrs. old )
CHD - HLHS, Double Outlet Right Ventricle, and Mitral Atresia varient / STROKE SURVIVOR
Carepage: https://www.carepages.com/carepages/SILLYJILLY07
Mom of Jilly:
Joy Proper Kimble (facebook)
Horseheads, NY /Childrens Hospital of Philadelphia, PA
blog: http://join-for-jilly.blogspot.com/
4. Susan Faith Jenness (Age: 2yrs. old )
CHD - double inlet single ventricle complex with ventricular inversion, hypoplastic left ventricle, transposition of the great arteries (TGA), ASD, remote VSD, severe aortic stenosis with a coarchtation of the aorta, and right aortic arch. / STROKE SURVIVOR
Mom of Susan: CandiceBayJenness (facebook)
Duluth, GA
Carepage: https://www.carepages.com/carepages/SusanFaiththeLittleMiracle
5. Bryton Maxim (Age: 16yrs. old )
CHD -transposition of the greater arteries, heart transplant/ STROKE SURVIVOR
Mom to Bryton: Terri Maxim
Children's Hospital Boston
Carepage: https://www.carepages.com/carepages/brytonmaxim
Posted Feb. 19, 2010 : After Bryton's heart transplant, he had a stroke. Actually, the transplant team believes that he may have had a smaller stroke just prior to the transplant while he was on the mechanical heart. I would love to be on the list. Bryton is doing so much better these days. He will never completely regain what he lost and that is so sad. It will be good to connect with others who have the same experience. Thanks for putting that out there for us.
6. Teri Benson (Age: 29yrs. old)
(CHD/STROKE SURVIVOR)
Elk Grove, CA
carepage being created, will update when complete
facebook: Teri Benson
e-mail: minnieweasel@gmail.com
February 22 at 12:20pm.: Hey Joy, Such a fantastic idea!!! You can definitely share my info with others. I remember how lost and alone I felt after I had my first stroke. If my story can make help one person feel less alone, it's worth it! Feel free to share any of my info.
7. Josie Ball (Age: 4 1/2 yrs. old)
(CHD / 2X STROKE SURVIVOR )
Mom to Josie: Melissa Martin Ball (facebook)
Danville, IL
Carepage: https://www.carepages.com/carepages/JosieBall
8. Owen Veloso (Age: 1 1/2 yrs. old)
CHD - HLHS / STROKE SURVIVOR
Mom to Owen: Laura Veloso (facebook)
Ontario, Canada
Carepage: https://www.carepages.com/carepages/OwenVeloso
Sick Kids Foundation (Hospital for Sick Children- Toronto, Ontario)
Dx: Hypoplastic Left Heart w/aortic atresia
Owen had his stroke at around 8 or 9 days old. He had arrested and was on ECMO at the time, so the exact day is unknown. As a result he has left side weakness. The stroke did not really effect Owen until it was time to start working on his physical development. It has been quite a struggle. Currently, Owen is 20months old and is still unable to walk. He only began to crawl at the beginning of the year, shortly after learning to get up into the sitting position on his own. He works with an occupational therapist and a physio therapist. Owen has shed many tears but his determination is astounding. On Feb. 16, 2010 he pulled himself to the standing position for the very first time!!! We do not have any doubts he will be walking soon.
9. Andrew Hirt (Age: 10 yrs.old)
CHD - HRHS, Tricuspid Atresia, Pulmonary Atresia and an ASD / STROKE SURVIVOR
Mom to Andrew: Carolyn Hirt (facebook)
Lees Summit, MO
Carepage: https://www.carepages.com/carepages/AndrewHirt
10. Lorelei Hoagland ( age:4yrs.)
CHD - HLHS / STROKE SURVIVOR
Mom to Lorelei: Nicole Haarmann Hoagland (facebook)
O'Fallon, MO
Carepage: https://www.carepages.com/carepages/Loreleih
Today is the first day of my new blog... I intend on learning more about blogging, I must admit, I do not have a clue what I am doing! I hope it will get better as I go, and am open for any suggestions from those who blog or know computers better than myself (that will not be hard to find)! It is very important to me, that there is a place for families to meet... who have experienced the journey, of the combination of :
CHD'S AND STROKES. I currently know, about 10 families, with these circumstances and have recently met some families, who know NO others... I believe we can learn from each other's experiences/journeys... and I hope that anyone interested, will join together! Thank you for visiting JILLY'S CHD/STROKE JOURNEY! Heart and Stroke Hugs!!!
CHD'S AND STROKES. I currently know, about 10 families, with these circumstances and have recently met some families, who know NO others... I believe we can learn from each other's experiences/journeys... and I hope that anyone interested, will join together! Thank you for visiting JILLY'S CHD/STROKE JOURNEY! Heart and Stroke Hugs!!!
Introduction:
Sadly, children with CHD'S (Congenital Heart Defects) are prone to many complications. One of those complications, is a STROKE.
I hope to find more up to date information on this subject.
HERE IS SOME INFORMATION I FOUND ON STROKES IN CARDIAC KIDS:
John Kylan Lynch, DO, MPH writes:
Cardiac disorders, identified in up to 50% of strokes in
case series, are the most common risk factor for stroke in
children . In the Canadian Pediatric Ischemic Stroke
Registry (CPISR) , cardiac disease was identified in 25%
of children with AIS. Cardiac disorders were the most common
risk factor among children hospitalized with AIS in
the United States from 1979 to 2000 (27% of all cases).
Several cardiac disorders are associated with stroke in children:
congenital heart disease, intracardiac defects, cardiac
procedures, and acquired heart disease. Cardiac disorders
can lead to the development of intracardiac thrombi that
may embolize to the brain or can lead to thrombosis in
cyanotic patients with anemia.
Congenital heart disease
(CHD) was the most common risk factor among children
hospitalized with stroke in California from 1991 to
2000. The incidence of CHD is one per 100 live births.
In the United States, early treatment and improved
surgical techniques for cardiac disorders have increased
survival rates and reduced cerebrovascular events: the
percentage of ischemic strokes due to cardiac disorders
decreased 76% among children hospitalized with ischemic
stroke between the years 1979 and 2000 [8].
http://en.wikipedia.org/wiki/Stroke
A stroke (sometimes called a cerebrovascular accident (CVA)) is the rapidly developing loss of brain function(s) due to disturbance in the blood supply to the brain, caused by a blocked or burst blood vessel. This can be due to ischemia (lack of glucose and oxygen supply) caused by thrombosis or embolism or due to a hemorrhage.[1] As a result, the affected area of the brain is unable to function, leading to inability to move one or more limbs on one side of the body, inability to understand or formulate speech, or inability to see one side of the visual field.[2]
http://pediatrics.aappublications.org/cgi/content/full/122/6/1292
ACCORDING TO THE OFFICIAL JOURNAL OF THE AMERICAN ACADEMY OF PEDIATRICS:
Published online December 1, 2008 PEDIATRICS Vol. 122 No. 6 December 2008, pp. 1292-1298 (doi:10.1542/peds.2007-1459)
ARTICLE
Frequency, Predictors, and Neurologic Outcomes of Vaso-occlusive Strokes Associated With Cardiac Surgery in Children
OBJECTIVE. Our aim was to define the frequency, predictors, and outcomes of stroke associated with cardiac surgery in children with congenital heart disease.
CONCLUSIONS. The frequency of vaso-occlusive stroke in children with congenital heart disease undergoing cardiac surgery was 5.4 cases per 1000 children. Age, duration of bypass, and reoperation may be associated with stroke risk.
The incidence rate of stroke after cardiac surgery among children with CHD was 5.4 cases per 1000 operations. Although this is likely an underestimate, it has important implications. Our study had insufficient power to identify predictors of stroke and potential preventative strategies. Ongoing research should continue toward improvements in intraoperative and postoperative management aimed at preventing neurologic morbidity.
Sadly, children with CHD'S (Congenital Heart Defects) are prone to many complications. One of those complications, is a STROKE.
I hope to find more up to date information on this subject.
HERE IS SOME INFORMATION I FOUND ON STROKES IN CARDIAC KIDS:
John Kylan Lynch, DO, MPH writes:
Cardiac disorders, identified in up to 50% of strokes in
case series, are the most common risk factor for stroke in
children . In the Canadian Pediatric Ischemic Stroke
Registry (CPISR) , cardiac disease was identified in 25%
of children with AIS. Cardiac disorders were the most common
risk factor among children hospitalized with AIS in
the United States from 1979 to 2000 (27% of all cases).
Several cardiac disorders are associated with stroke in children:
congenital heart disease, intracardiac defects, cardiac
procedures, and acquired heart disease. Cardiac disorders
can lead to the development of intracardiac thrombi that
may embolize to the brain or can lead to thrombosis in
cyanotic patients with anemia.
Congenital heart disease
(CHD) was the most common risk factor among children
hospitalized with stroke in California from 1991 to
2000. The incidence of CHD is one per 100 live births.
In the United States, early treatment and improved
surgical techniques for cardiac disorders have increased
survival rates and reduced cerebrovascular events: the
percentage of ischemic strokes due to cardiac disorders
decreased 76% among children hospitalized with ischemic
stroke between the years 1979 and 2000 [8].
http://en.wikipedia.org/wiki/Stroke
A stroke (sometimes called a cerebrovascular accident (CVA)) is the rapidly developing loss of brain function(s) due to disturbance in the blood supply to the brain, caused by a blocked or burst blood vessel. This can be due to ischemia (lack of glucose and oxygen supply) caused by thrombosis or embolism or due to a hemorrhage.[1] As a result, the affected area of the brain is unable to function, leading to inability to move one or more limbs on one side of the body, inability to understand or formulate speech, or inability to see one side of the visual field.[2]
http://pediatrics.aappublications.org/cgi/content/full/122/6/1292
ACCORDING TO THE OFFICIAL JOURNAL OF THE AMERICAN ACADEMY OF PEDIATRICS:
Published online December 1, 2008 PEDIATRICS Vol. 122 No. 6 December 2008, pp. 1292-1298 (doi:10.1542/peds.2007-1459)
ARTICLE
Frequency, Predictors, and Neurologic Outcomes of Vaso-occlusive Strokes Associated With Cardiac Surgery in Children
OBJECTIVE. Our aim was to define the frequency, predictors, and outcomes of stroke associated with cardiac surgery in children with congenital heart disease.
CONCLUSIONS. The frequency of vaso-occlusive stroke in children with congenital heart disease undergoing cardiac surgery was 5.4 cases per 1000 children. Age, duration of bypass, and reoperation may be associated with stroke risk.
The incidence rate of stroke after cardiac surgery among children with CHD was 5.4 cases per 1000 operations. Although this is likely an underestimate, it has important implications. Our study had insufficient power to identify predictors of stroke and potential preventative strategies. Ongoing research should continue toward improvements in intraoperative and postoperative management aimed at preventing neurologic morbidity.
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