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!!!
Friday, March 26, 2010
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!!!
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