SUDEP (Sudden Unexpected Death in epilepsy) is estimated to account for 34% of all sudden deaths in children. Wear purple Friday March 26th and remember Hannah. Let's help all the children like Hannah out there and bring awareness to epilepsy.
Wednesday, March 24, 2010
Purple Day Friday...
These were t-shirts my sister had made for our family. Don't forget to wear purple in memory of Hannah and to raise awareness for Epilepsy.
SUDEP (Sudden Unexpected Death in epilepsy) is estimated to account for 34% of all sudden deaths in children. Wear purple Friday March 26th and remember Hannah. Let's help all the children like Hannah out there and bring awareness to epilepsy.
SUDEP (Sudden Unexpected Death in epilepsy) is estimated to account for 34% of all sudden deaths in children. Wear purple Friday March 26th and remember Hannah. Let's help all the children like Hannah out there and bring awareness to epilepsy.
Monday, March 22, 2010
PPCD
Last week was a long one. I was ready for it to be over. The boys had Spring break so things were even more out of routine. I had way too much time on my hands no matter how much I tried to stay busy. On Friday the boys, Leeann(Kyle's gf), and I made a trip to the cemetary. I took Easter flowers and a lawn rabbit for Hannah's grave. I think I did o.k. It's hard. The grave is still relatively fresh so it's ugly. The ugliness of it really bothers me. I know that sounds strange but it's the way I feel. I'm thinking about ways to change that.
This morning was my first day in PPCD at Franklin. I really enjoyed it. The kids are awesome. All boys. Hannah would have LOVED it. Nothing has felt "right" since she passed away. Today felt right. I look forward to next time.
Thank you for your prayers and support! They mean the world to us!
This morning was my first day in PPCD at Franklin. I really enjoyed it. The kids are awesome. All boys. Hannah would have LOVED it. Nothing has felt "right" since she passed away. Today felt right. I look forward to next time.
Thank you for your prayers and support! They mean the world to us!
Tuesday, March 16, 2010
Two months tomorrow
Tomorrow will mark the two month passing of Hannah. I'm typing this today because I don't believe I will be able to tomorrow. I've often complained that the days fly in life but man they sure do slow in death. It feels like she has been gone for years. My body literally aches to feel her against me. It's definately getting harder I think.
I find myself really struggling. As long as I do Hannah unrelated things or things that I feel honor Hannah's memory I am o.k. It's the everyday things I struggle with. I have yet to purchase groceries. Who would have thought something as normal as buying groceries would involve grieving. I did not realize how much I shopped for Hannah and Hannah related stuff. Right now I go in the store and grab a thing or two and it becomes too much so I have to go. What I do purchase is frozen stuff that I can just throw in the oven or microwave. I can't bring myself to put together a meal. Dinner time was special for me because Hannah was there under foot saying, "it's hot, very hot, yes it is" or "it's time to eat eat". In between mixing or putting ingredients together I'd have to sing and dance "First you hop hop hop all over the place, shake your dino tail and make a funny face, everybody is twisting and turning, we have a lot of fun while we're learning to do the dino dance!" I'm so very thankful that although it was annoying and a little difficult to do at times I did it anyway. Then, today I had to leave Cracker Barrel because there was way too many Easter related things around. Little clutch purses, hair accessories, and toys everywhere. If Easter is this hard I don't want to even imagine Christmas.
It is hard. It's excruciating sometimes. The thing I'm most thankful for right now is that my faith went through a transformation the last couple years. Without that transformation I would not be able to get through this. There are nights when I just cry out for help because the pain is too much to bare and I've always felt strength come. I'm constantly reminded that someone much bigger than I am is at work in my life and He loves me. One of these days I really need to take the time to tell all the things that transpired even months before Hannah's passing. I didn't understand them then but I do now. I'm thankful.
I want to say thank you to everyone that was involved in Hannah's life in any way. You made it a good one. She loved all of you and so do I. Please keep us in your prayers. We have Easter and the very next month would have been her 9th birthday. What an incredible celebration we would have had! God Bless!
I find myself really struggling. As long as I do Hannah unrelated things or things that I feel honor Hannah's memory I am o.k. It's the everyday things I struggle with. I have yet to purchase groceries. Who would have thought something as normal as buying groceries would involve grieving. I did not realize how much I shopped for Hannah and Hannah related stuff. Right now I go in the store and grab a thing or two and it becomes too much so I have to go. What I do purchase is frozen stuff that I can just throw in the oven or microwave. I can't bring myself to put together a meal. Dinner time was special for me because Hannah was there under foot saying, "it's hot, very hot, yes it is" or "it's time to eat eat". In between mixing or putting ingredients together I'd have to sing and dance "First you hop hop hop all over the place, shake your dino tail and make a funny face, everybody is twisting and turning, we have a lot of fun while we're learning to do the dino dance!" I'm so very thankful that although it was annoying and a little difficult to do at times I did it anyway. Then, today I had to leave Cracker Barrel because there was way too many Easter related things around. Little clutch purses, hair accessories, and toys everywhere. If Easter is this hard I don't want to even imagine Christmas.
It is hard. It's excruciating sometimes. The thing I'm most thankful for right now is that my faith went through a transformation the last couple years. Without that transformation I would not be able to get through this. There are nights when I just cry out for help because the pain is too much to bare and I've always felt strength come. I'm constantly reminded that someone much bigger than I am is at work in my life and He loves me. One of these days I really need to take the time to tell all the things that transpired even months before Hannah's passing. I didn't understand them then but I do now. I'm thankful.
I want to say thank you to everyone that was involved in Hannah's life in any way. You made it a good one. She loved all of you and so do I. Please keep us in your prayers. We have Easter and the very next month would have been her 9th birthday. What an incredible celebration we would have had! God Bless!
Monday, March 15, 2010
Metabolic genetecist testing results.
On Saturday I got a sweet letter from the metabolic geneticist outlining the tests they did in the hospital before Hannah passed away and the results. Everything came back normal. I really wasn't surprised. I think we mostly just had them done to rule out syndromes that are common in kids who have seizures.
This is what I believe Hannah had (just needed a little more time to get to Chicago. I got wrapped up in the "hows" of getting her there etc. and just thought we had time. :( Her epi here wanted to rule out everything else before considering Dravet.)
Dravet syndrome
INTRODUCTION
Dravet (Dra-vay) syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a neurodevelopmental disorder beginning in infancy and characterized by severe epilepsy that does not respond well to treatment. Estimates of the prevalence of this rare disorder have ranged from 1:20,000 to 1:40,000 births, though the incidence may be found to be greater as the syndrome becomes better recognized and new genetic evidence is discovered. It is thought to occur with similar frequency in both genders and knows no geographic or ethnic boundaries.
The course of Dravet syndrome is highly variable from person to person. Seizures begin during the first year of life and development is normal prior to their onset. In most cases, the first seizures occur with fever and are generalized tonic-clonic (grand mal) or unilateral (one-sided) convulsions. These seizures are often prolonged and may lead to status epilepticus, a medical emergency. In time, seizures increase in frequency and begin to occur without fever. Additional seizure types appear, most often these are myoclonic, atypical absence, and complex-partial seizures.
During the second to fourth year of life, varying degrees of developmental delay typically become apparent and can include regression of aquired skills.
Additional features that are seen in significant numbers of patients with Dravet syndrome may include sensory integration disorders and other autism spectrum characteristics, orthopedic or movement disorders, frequent or chronic upper respiratory and ear infections, sleep disturbance, dysautonomia, and problems with growth and nutrition.
GENETICS
The sodium channel gene SCN1A is currently the most clinically relevant gene found to cause epilepsy and is a known contributor to a significant percentage (approximately 50-80%) of cases of Dravet syndrome. Researchers have documented many different mutations of the SCN1A gene, however the majority of them do not result in Dravet syndrome. SCN1A mutations most often lead to milder forms of epilepsy, including Generalized Epilepsy with Febrile Seizures (GEFS), Generalized Epilepsy with Febrile Seizures Plus (GEFS+), Intractable Childhood Epilepsy with Generalized Tonic-Clonic Seizures (ICEGTC), and Severe Myoclonic Epilepsy, Borderline (SMEB). Dravet syndrome is generally considered to be the severe end of a broad spectrum of SCN1A-related epilepsies.
GEFS -------------- GEFS+ ----------- ICEGTC ------------ SMEB -------------- SMEI/Dravet syndrome
Mutations of the SCN1A gene have an autosomal dominant inheritance pattern, meaning that they can be passed from parent to child. However, in Dravet syndrome, although at least one-fourth of the affected individuals have some history of febrile seizures or epilepsy in their extended family, the gene mutation nearly always arises “de novo”, or new to the individual, meaning that neither parent tests positive for the gene mutation and it is thought to have occurred spontaneously after conception. Modifying genes and environmental factors likely play an important role in determining the severity of the resulting condition. Other genes have also recently been implicated in Dravet syndrome, including SCN9A and PCDH19. Much remains to be understood about the causes of Dravet syndrome and research is ongoing. Although Hannah tested normal for SCN1A and PCDH19 I have friends who have had their children retested and the mutation was found the second time. Also you can be clinical for Dravet without the gene mutation.
TREATMENT
At this time, the treatments available for Dravet syndrome are focused on improving symptoms, primarily anticonvulsant medications to control seizures. Response to these medicines is variable, but often seizures persist despite treatment. While certain medications have been found to be generally useful for individuals with Dravet syndrome, others have been quite consistently found to have an aggravating effect. The helpfulness of other anticonvulsant therapies, such as the Ketogenic Diet and vagus nerve stimulation (VNS), are in ongoing evaluation. Once again, results tend to be highly variable from person to person.
Early implementation of global therapies is essential to support optimal development. Patients with Dravet syndrome should receive physical, occupational, speech, and social/play therapies and an enriched environment is encouraged. Treatments to address orthopedic, sleep, autonomic, immune and growth problems may be important considerations.
OUTCOMES
Outcomes, once again, tend to be variable. For many individuals, the progression of Dravet syndrome begins to stabilize after the age of four. Partial and myoclonic seizures may attenuate, and in some cases disappear. Convulsive seizures, though their frequency and intensity may moderate, usually persist, often occurring during sleep. Fever continues to provoke seizures and can still lead to status epilepticus. Communication, motor, and cognitive function stabilize, but significant delays remain to varying degrees. Despite being at increased risk for accidents, infection, status epilepticus, and Sudden Unexplained Death in Epilepsy (SUDEP), an individual with Dravet syndrome has an 85% chance of surviving into adulthood. Because this disorder is rare and has relatively recently been identified as a distinct syndrome, little is known about long-term prognosis and life expectancy.
http://www.idea-league.org/dravet-syndrome You can read more extensively and follow links at this site.
I posted this information for any other moms who may be following Hannah's story and they need this information. I only learned about Dravet a couple years ago and I learned about it from parents who had kids with it. I wish I had been more "pushy". Not that it would have changed the outcome but for my own peace of mind. Please support the Idea League and what they are doing to help these kiddos. Through them I have learned of many other children like Hannah who have left their families way too soon. It's a devastating experience and one that hopefully some day is preventable.
This is what I believe Hannah had (just needed a little more time to get to Chicago. I got wrapped up in the "hows" of getting her there etc. and just thought we had time. :( Her epi here wanted to rule out everything else before considering Dravet.)
Dravet syndrome
INTRODUCTION
Dravet (Dra-vay) syndrome, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a neurodevelopmental disorder beginning in infancy and characterized by severe epilepsy that does not respond well to treatment. Estimates of the prevalence of this rare disorder have ranged from 1:20,000 to 1:40,000 births, though the incidence may be found to be greater as the syndrome becomes better recognized and new genetic evidence is discovered. It is thought to occur with similar frequency in both genders and knows no geographic or ethnic boundaries.
The course of Dravet syndrome is highly variable from person to person. Seizures begin during the first year of life and development is normal prior to their onset. In most cases, the first seizures occur with fever and are generalized tonic-clonic (grand mal) or unilateral (one-sided) convulsions. These seizures are often prolonged and may lead to status epilepticus, a medical emergency. In time, seizures increase in frequency and begin to occur without fever. Additional seizure types appear, most often these are myoclonic, atypical absence, and complex-partial seizures.
During the second to fourth year of life, varying degrees of developmental delay typically become apparent and can include regression of aquired skills.
Additional features that are seen in significant numbers of patients with Dravet syndrome may include sensory integration disorders and other autism spectrum characteristics, orthopedic or movement disorders, frequent or chronic upper respiratory and ear infections, sleep disturbance, dysautonomia, and problems with growth and nutrition.
GENETICS
The sodium channel gene SCN1A is currently the most clinically relevant gene found to cause epilepsy and is a known contributor to a significant percentage (approximately 50-80%) of cases of Dravet syndrome. Researchers have documented many different mutations of the SCN1A gene, however the majority of them do not result in Dravet syndrome. SCN1A mutations most often lead to milder forms of epilepsy, including Generalized Epilepsy with Febrile Seizures (GEFS), Generalized Epilepsy with Febrile Seizures Plus (GEFS+), Intractable Childhood Epilepsy with Generalized Tonic-Clonic Seizures (ICEGTC), and Severe Myoclonic Epilepsy, Borderline (SMEB). Dravet syndrome is generally considered to be the severe end of a broad spectrum of SCN1A-related epilepsies.
GEFS -------------- GEFS+ ----------- ICEGTC ------------ SMEB -------------- SMEI/Dravet syndrome
Mutations of the SCN1A gene have an autosomal dominant inheritance pattern, meaning that they can be passed from parent to child. However, in Dravet syndrome, although at least one-fourth of the affected individuals have some history of febrile seizures or epilepsy in their extended family, the gene mutation nearly always arises “de novo”, or new to the individual, meaning that neither parent tests positive for the gene mutation and it is thought to have occurred spontaneously after conception. Modifying genes and environmental factors likely play an important role in determining the severity of the resulting condition. Other genes have also recently been implicated in Dravet syndrome, including SCN9A and PCDH19. Much remains to be understood about the causes of Dravet syndrome and research is ongoing. Although Hannah tested normal for SCN1A and PCDH19 I have friends who have had their children retested and the mutation was found the second time. Also you can be clinical for Dravet without the gene mutation.
TREATMENT
At this time, the treatments available for Dravet syndrome are focused on improving symptoms, primarily anticonvulsant medications to control seizures. Response to these medicines is variable, but often seizures persist despite treatment. While certain medications have been found to be generally useful for individuals with Dravet syndrome, others have been quite consistently found to have an aggravating effect. The helpfulness of other anticonvulsant therapies, such as the Ketogenic Diet and vagus nerve stimulation (VNS), are in ongoing evaluation. Once again, results tend to be highly variable from person to person.
Early implementation of global therapies is essential to support optimal development. Patients with Dravet syndrome should receive physical, occupational, speech, and social/play therapies and an enriched environment is encouraged. Treatments to address orthopedic, sleep, autonomic, immune and growth problems may be important considerations.
OUTCOMES
Outcomes, once again, tend to be variable. For many individuals, the progression of Dravet syndrome begins to stabilize after the age of four. Partial and myoclonic seizures may attenuate, and in some cases disappear. Convulsive seizures, though their frequency and intensity may moderate, usually persist, often occurring during sleep. Fever continues to provoke seizures and can still lead to status epilepticus. Communication, motor, and cognitive function stabilize, but significant delays remain to varying degrees. Despite being at increased risk for accidents, infection, status epilepticus, and Sudden Unexplained Death in Epilepsy (SUDEP), an individual with Dravet syndrome has an 85% chance of surviving into adulthood. Because this disorder is rare and has relatively recently been identified as a distinct syndrome, little is known about long-term prognosis and life expectancy.
http://www.idea-league.org/dravet-syndrome You can read more extensively and follow links at this site.
I posted this information for any other moms who may be following Hannah's story and they need this information. I only learned about Dravet a couple years ago and I learned about it from parents who had kids with it. I wish I had been more "pushy". Not that it would have changed the outcome but for my own peace of mind. Please support the Idea League and what they are doing to help these kiddos. Through them I have learned of many other children like Hannah who have left their families way too soon. It's a devastating experience and one that hopefully some day is preventable.
Wednesday, March 10, 2010
Koolio Chapman
One year ago today we met our Kool man. What a first year he's had with the Chapman family. I thank God everyday that he's in our lives and I thank God he was in the last over 10 months of Hannah's life. It was a fuller and more fulfilling one because she had her "Koo Yoo".(that's what she called him at first) Thank you 4paws for making it possible for Hannah to have such a devoted friend to the end. Our family is forever thankful for you. Thank you to all of Hannah's angels who helped us be able to make Koolio possible for her. Thank you HISD and HES for your willingness to work with us and make accomadations to include him in Hannah's school day. I just don't think I can thank all of you enough for making him a possiblity for our family. Sincerely, I thank you.
After Spring Break I'm going to go to Hannah's old school and help in the PPCD classroom when I can. I'm really excited and think that being around the kiddos and being in the environment Hannah so loved will do me a world of good. I'm hopeful that I can include the school she attended when she passed as well but am starting out at the old school first. I was so fortunate in that Hannah's teachers were more than her teachers, they became my friends. So, that's what's happening for now. I will certainly share any new developments with y'all when they come up. Thank you again for all your support and prayers. I need them.
Sunday, March 7, 2010
Blogs & stuff
I will be blogging about things unrelated to Hannah on www.chapmanliving.blogspot.com I'm feeling the need to go back to blogging on the chapmanliving site I created back in 2005. It's more of a general family blog. So those of you who are following, you may want to check chapmanliving out. I am planning to keep up Hannah's blog to some extent. I know there are things that will be Hannah related happening.
If y'all would please help me pray about something I'd appreciate it. I was contacted about an amazing opportunity to share Hannah's impact on my life. The program is called Chris Fabry live and it's an incredible radio program. I do not have any information on it and it's not a for sure thing. Mr. Fabry just contacted me and asked me to think/pray about it and he'd keep in touch. I'm asking God to order my steps and want anything I say or do to honor Hannah and glorify Him.
I miss my girl everyday. I miss her so much sometimes it's hard to breath. My friend's grandson; Javan, asked me yesterday if I still missed Hannah. I told him, "yes, I do". He said, "I do too." I couldn't help but remember the last time she saw him. He put her in his wagon and he pulled her all over the yard. She LOVED it and I think he enjoyed it too.Today I was cleaning and I found a hair tie that had quite a bit of her hair on it. I just rubbed my fingers across that hair over and over and longed to kiss that sweet head. I found pictures of her that we haven't put in an album yet and it made me long for that wonderful giggle and beautiful smile. I don't believe I'll ever stop longing for her. Still even though I miss her I find myself so very proud of her for the life she lived despite the odds. I look back at those NICU pictures and remember she only had a 50/50 chance of survival and she made it nearly 9 years. I can't help but thank God for giving me 9 years with my Hannah. I will forever be grateful for the time we had. Forever.
My friend Vicki had this bracelet made for me. It's a memorial bracelet. The picture doesn't do it justice but the bracelet is so perfect. It has Hannah's name and her birth date, etc. I'll attach a picture.
Thanks so much for everything. Especially all the prayers and support. We need them so much.
God Bless!
If y'all would please help me pray about something I'd appreciate it. I was contacted about an amazing opportunity to share Hannah's impact on my life. The program is called Chris Fabry live and it's an incredible radio program. I do not have any information on it and it's not a for sure thing. Mr. Fabry just contacted me and asked me to think/pray about it and he'd keep in touch. I'm asking God to order my steps and want anything I say or do to honor Hannah and glorify Him.
I miss my girl everyday. I miss her so much sometimes it's hard to breath. My friend's grandson; Javan, asked me yesterday if I still missed Hannah. I told him, "yes, I do". He said, "I do too." I couldn't help but remember the last time she saw him. He put her in his wagon and he pulled her all over the yard. She LOVED it and I think he enjoyed it too.Today I was cleaning and I found a hair tie that had quite a bit of her hair on it. I just rubbed my fingers across that hair over and over and longed to kiss that sweet head. I found pictures of her that we haven't put in an album yet and it made me long for that wonderful giggle and beautiful smile. I don't believe I'll ever stop longing for her. Still even though I miss her I find myself so very proud of her for the life she lived despite the odds. I look back at those NICU pictures and remember she only had a 50/50 chance of survival and she made it nearly 9 years. I can't help but thank God for giving me 9 years with my Hannah. I will forever be grateful for the time we had. Forever.
My friend Vicki had this bracelet made for me. It's a memorial bracelet. The picture doesn't do it justice but the bracelet is so perfect. It has Hannah's name and her birth date, etc. I'll attach a picture.
Thanks so much for everything. Especially all the prayers and support. We need them so much.
God Bless!
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