Sep 30, 2009
Deaf Awareness
Deaf Awareness Week was actually last week, but better late than never! This video will give you an idea of what life sounds like for a person with a hearing impairment....
Brayden's Message: Enjoy Every Second
A special story by Bryaden's mom, Alicia.... A reminder to enjoy every second!
Find out more about Brayden and Alicia at their blog, Small Portion of a Life's Journey, or their Caring Bridge page.
My husband and I have been married for nearly 10 months. I have 2 girls, ages 7 and 4, from a previous relationship; he has one son, who is 3 from a previous relationship; and we share a son, who is Brayden, and he is nearly 14 1/2 months old. My husband is in the US Navy and we're currently stationed in Charleston, SC while he finishes Nuclear Power Training for the next 7 months.
My pregnancy was a roller coaster of emotions, everything from shock and denial to excitement and hope. I didn't know I was still pregnant until I was around 5 months pregnant, due to irregular bleeding, and we found out then that there was a problem. I found out during an ultrasound in about my 22nd week that Brayden had a problem with his brain. They didn't know at that time what exactly the diagnosis was, or if they did they didn't tell me that it was hydranencephaly. We were advised to terminate, but I couldn't bring myself to do that and held on to hope that Brayden would be okay.
I was scheduled for a c-section, my husband was in SC and I was in MO so this was for convenience and due to the fact that Brayden's head was measuring very large. They warned me that he would possibly not survive the birthing process if he survived the pregnancy. And if he did survive, he wouldn't be able to eat, breathe, or regulate his own body temperature...and he wouldn't leave the hospital. Brayden decided to come earlier than the scheduled c-section & although I had complications from my c-section, Brayden was a strong little man and didn't need any help after birth.
Aside from his head being large, he didn't appear to have any other health problems. We thought, perhaps, that the prognosis previously given had been wrong.
Since the doctors told us that there was absolutely no hope for him to survive and sent us home on hospice care, telling us to prepare for his passing, we were devastated and prepared for the worst.
My other 2 girls were well informed to the fact that their little brother had a problem with his brain, and that he would probably not be with us for very long. It was a couple of months before we realized that he was doing very well, despite the odds given to him, and many more months before we stopped planning for his passing and celebrating his life with us instead.
I found great information at the Rays of Sunshine web site. I joined the Yahoo support group through that site to network with other parents of children with hydran. Through them I found a great sense of optimism for Brayden and his life, rather than the doom and gloom outcome provided by the doctors in the beginning.
I also found great support through the hospice program in the early days. They offered a supportive staff, especially our nurse and pastor who visited with us every few days. We were dropped from the program after we elected to have a shunt placed to relieve the CSF pressure building up in Brayden's head. That was a difficult decision, I had relied on the hospice care for the emotional support they provided, but that surgery saved my son's life!
Brayden's diagnosis is Hydranencephaly ...a large portion of his brain was damaged in utero, ultimately by a stroke, and replaced with sacs of cerebrospinal fluid. The cause is unknown. We were told that he didn't have a brain, when in fact he does have pieces of his, which are apparently doing some work of their own.
Brayden is not on any medications! That's a huge feat considering his condition!! He receives Early Intervention services every other week, Physical Therapy twice a week, Occupational Therapy once a week, Speech Therapy twice a week...and visits with the neurology team every 6 months.
He is defying the odds, growing stronger every day, and proving himself to be nothing short of a miracle!
Brayden is stubborn and proves that during his therapy sessions by doing the complete opposite of what he's supposed to do, while smiling every second of it. His dad plays the guitar, so he LOVES that, but really loves any kind of music...even more if there are lights involved! He loves the people that surround him, his daddy and I and his sisters, and will show great amounts of unhappiness if he's not with us...especially me, he's a mommy's boy through and through :) Most of the time, unless he's hungry or sleepy, he's a happy little man full of smiles and chuckles for everyone he loves.
My advice to other parents is to never take the Dr's word, or the textbook diagnosis and prognosis, as the last word. There are stories of children and adults alike, defying the odds given to them and proving their doctor's prognosis wrong. Having hope for your child can prove to grant miracles in itself. Keeping the levels of optimism high is important, a happy atmosphere is nurturing for any child, especially one that is said to be teetering on the edge of life here on Earth. Read everything you find about your child's condition, knowledge is power, and use it to advocate for your child and fight for what you know they need to provide them with the best quality of life possible!! Most importantly, enjoy every second...
Resources I find helpful:
~the book Changed by a Child: Companion Notes for Parents of a Child with a Disability by Barbara Gill
~ my own blog full of information and inspiration
~blog surfing has proven to provide massive amounts of inspirational stories!
~networking with parents in your area with special needs children
~national parent-to-parent networking for parents of children with your child's condition specifically
~online support groups...search Yahoo Groups and you'll find one for your child's condition
Sep 28, 2009
Every Child Deserves Unconditional Acceptance
Children's Craniofacial Association has declared September as Craniofacial Acceptance Month.
HE'S MY SON
Yes, I am aware that September is over. But I can honestly say acceptance is something I fight for every day of the year, on behalf of my son. Born at 36 weeks, Austin was diagnosed with Branchiootorenal Syndrome, a rare genetic disorder that affects 1 in 40,000 people. BOR itself is not a craniofacial disorder it is an autosomal dominant genetic disorder that includes malformations of the ear and cysts in the neck, hearing loss, and malformations of the kidney.
As a result of BOR Syndrome, Austin's list of physical challenges also double as medical dictionary tongue twisters: Gastro-esophageal reflux disease, Microtia, Aural Atresia, Hemifacial Microsomia, Macrocephaly, Hypotonia and Tracheotomy, to name a few. These days I rattle them off with ease, I can explain what each one means to ME and how it affects Austin. BOR contributed to Austin's ears not developing, his jaw being so small that his tongue obstructed his airway, and some facial nerve paralysis.
Although Austin’s life would not be possible without a lot of assistive medical technology; he does have a life, a very full life indeed. He is like any typical 23 month old, he enjoys hanging out with his cousins at Disneyland, watches Blue's Clues, plays with blocks & puzzles and reads his favorite books.
While going for doctor visits or having therapists and nurses in his home are common for him, he remains friendly and (mostly) happy to see them. To explain how he lives his life with a Trach, G-tube or Chronic Lung Disease would require a much lengthier story than we have time and space for here, but in all of his struggles Austin has continued surprise us with his utter resilience. You can read the details on his blog.
HE HAS WHAT?
Microtia is an incompletely formed ear. It may be just a small ear, or other variations including having only a bump of tissue at the location where the ear should normally be found. Microtia may occur as an isolated deformity although it typically presents as part of a spectrum of other defects, either minor or major. It occurs more commonly in males and on the right side (unilateral). Approximately 10% may occur on both sides (bilateral) which is Austin’s case.
Aural Atresia is the closing or absence of an ear canal in the middle ear. Microtia and Atresia can occur alone or together. They can also be associated with Hemifacial Microsomia.
Children born with bilateral Microtia/Atresia often require bone-conduction hearing aids within the first few months of life. Austin got his hearing aid at 4.5 months. Although the surgeries to correct this problem used to be started as early as 4 years of age in the past, most surgeons prefer to start the external ear surgeries at about 6 to 7 years of age.
Hemifacial Microsomia is a condition in which the lower half of one side of the face does not grow normally. The most obvious sign of this condition is a partially formed ear or total absence of an ear and partial facial paralysis. The syndrome varies in severity, but always includes the underdevelopment of the ear and the mandible. This is the second most common facial birth defect after clefts.
The jaw abnormality (micrognathia) in children with hemifacial microsomia may range from a small but normally shaped parts of the jaw bone resulting in a mild asymmetry to complete absence of these structures resulting in a more severe jaw deformity. Because of the jaw abnormality these infants may be at risk for breathing and feeding problems and need to be evaluated by a specialist if there are any indications of airway compromise or failure to gain weight. Occasionally a tracheotomy and/or gastrostomy are needed to help with breathing and feeding.
Branchiootorenal (BOR Syndrome): Just like any other syndrome there is not one clear cut case of BOR, it is actually now classified as a spectrum disorder.
The B in BOR refers to the branchial arches, the area of the embryo that develops into the outer and middle ear, the neck and the lower part of the baby's face. There are several types of malformations of the branchial arches in BOR; Austin has auricular pits, which are very small holes about the size of the hole in a pierced ear, just below his ears. Normally these might be found on the neck area.
Oto refers to the ear and in particular the hearing loss that is part of the syndrome. The hearing loss can be sensorineural, conductive or mixed. It can be stable or progressive and the severity can range from mild to profound. Austin has bilateral, severe conductive hearing impairment (70-90dB).
Renal refers to the kidneys which can be abnormal in size, shape and/or structure. They may be smaller than usual or have a malformation that does not interfere with function or cause any symptoms. Austin thankfully does not have any kidney problems at present.
BEYOND THE FACE IS A HEART
Children with craniofacial differences come in many packages, but the one thing all have in common is that there is a living, breathing, feeling person behind those big named syndromes and disorders. These kids are funny, serious, loving, quirky, accepting and enduring. Each should be acknowledged for their own individual talents, as well as, their challenges.
Keep in mind beyond the face is a heart; the person you are staring, gawking or pointing at is someone's much loved child, it may be my son. Consider instead, a smile and a wave.
---------------------------------------------
There are many wonderful organizations you can consider supporting. They offer affected families medical treatment or support and resources.
Children's Craniofacial Association (CCAKids)
AmeriFace
Little Baby Face Foundation
FACES: The National Craniofacial Association
Foundation for Faces of Children
HE'S MY SON
Yes, I am aware that September is over. But I can honestly say acceptance is something I fight for every day of the year, on behalf of my son. Born at 36 weeks, Austin was diagnosed with Branchiootorenal Syndrome, a rare genetic disorder that affects 1 in 40,000 people. BOR itself is not a craniofacial disorder it is an autosomal dominant genetic disorder that includes malformations of the ear and cysts in the neck, hearing loss, and malformations of the kidney.
As a result of BOR Syndrome, Austin's list of physical challenges also double as medical dictionary tongue twisters: Gastro-esophageal reflux disease, Microtia, Aural Atresia, Hemifacial Microsomia, Macrocephaly, Hypotonia and Tracheotomy, to name a few. These days I rattle them off with ease, I can explain what each one means to ME and how it affects Austin. BOR contributed to Austin's ears not developing, his jaw being so small that his tongue obstructed his airway, and some facial nerve paralysis.
Although Austin’s life would not be possible without a lot of assistive medical technology; he does have a life, a very full life indeed. He is like any typical 23 month old, he enjoys hanging out with his cousins at Disneyland, watches Blue's Clues, plays with blocks & puzzles and reads his favorite books.
While going for doctor visits or having therapists and nurses in his home are common for him, he remains friendly and (mostly) happy to see them. To explain how he lives his life with a Trach, G-tube or Chronic Lung Disease would require a much lengthier story than we have time and space for here, but in all of his struggles Austin has continued surprise us with his utter resilience. You can read the details on his blog.
HE HAS WHAT?
Microtia is an incompletely formed ear. It may be just a small ear, or other variations including having only a bump of tissue at the location where the ear should normally be found. Microtia may occur as an isolated deformity although it typically presents as part of a spectrum of other defects, either minor or major. It occurs more commonly in males and on the right side (unilateral). Approximately 10% may occur on both sides (bilateral) which is Austin’s case.
Aural Atresia is the closing or absence of an ear canal in the middle ear. Microtia and Atresia can occur alone or together. They can also be associated with Hemifacial Microsomia.
Children born with bilateral Microtia/Atresia often require bone-conduction hearing aids within the first few months of life. Austin got his hearing aid at 4.5 months. Although the surgeries to correct this problem used to be started as early as 4 years of age in the past, most surgeons prefer to start the external ear surgeries at about 6 to 7 years of age.
Hemifacial Microsomia is a condition in which the lower half of one side of the face does not grow normally. The most obvious sign of this condition is a partially formed ear or total absence of an ear and partial facial paralysis. The syndrome varies in severity, but always includes the underdevelopment of the ear and the mandible. This is the second most common facial birth defect after clefts.
The jaw abnormality (micrognathia) in children with hemifacial microsomia may range from a small but normally shaped parts of the jaw bone resulting in a mild asymmetry to complete absence of these structures resulting in a more severe jaw deformity. Because of the jaw abnormality these infants may be at risk for breathing and feeding problems and need to be evaluated by a specialist if there are any indications of airway compromise or failure to gain weight. Occasionally a tracheotomy and/or gastrostomy are needed to help with breathing and feeding.
Branchiootorenal (BOR Syndrome): Just like any other syndrome there is not one clear cut case of BOR, it is actually now classified as a spectrum disorder.
The B in BOR refers to the branchial arches, the area of the embryo that develops into the outer and middle ear, the neck and the lower part of the baby's face. There are several types of malformations of the branchial arches in BOR; Austin has auricular pits, which are very small holes about the size of the hole in a pierced ear, just below his ears. Normally these might be found on the neck area.
Oto refers to the ear and in particular the hearing loss that is part of the syndrome. The hearing loss can be sensorineural, conductive or mixed. It can be stable or progressive and the severity can range from mild to profound. Austin has bilateral, severe conductive hearing impairment (70-90dB).
Renal refers to the kidneys which can be abnormal in size, shape and/or structure. They may be smaller than usual or have a malformation that does not interfere with function or cause any symptoms. Austin thankfully does not have any kidney problems at present.
BEYOND THE FACE IS A HEART
Children with craniofacial differences come in many packages, but the one thing all have in common is that there is a living, breathing, feeling person behind those big named syndromes and disorders. These kids are funny, serious, loving, quirky, accepting and enduring. Each should be acknowledged for their own individual talents, as well as, their challenges.
Keep in mind beyond the face is a heart; the person you are staring, gawking or pointing at is someone's much loved child, it may be my son. Consider instead, a smile and a wave.
---------------------------------------------
There are many wonderful organizations you can consider supporting. They offer affected families medical treatment or support and resources.
Children's Craniofacial Association (CCAKids)
AmeriFace
Little Baby Face Foundation
FACES: The National Craniofacial Association
Foundation for Faces of Children
Make Your Day Monday: Dreams Do Come True!
To follow are TWO special stories about TWO special boys who had a dream and that dream came true!....
Ben
Thanks to Make-A-Wish and a VIP, Ben and his family got to enjoy a Saturday at the NH Speedway. They were lucky enough to be inside a suite, where it was quiet...and warm, with unlimited beverages and food. Ben LOVED watching the races...and the cool crashes.
Thanks for a great family day Make-A-Wish!
Tucker
(click Tucker's name to read his amazing kidz story)
Have you ever had one of those days that you keep thinking "this day is so amazing, it is like a dream"? Tucker's family lived it! Here is their story....
We were given tickets from Shriner's Hospital. We received these tickets because Tucker has been a patient at Shriner's. It was so incredibly amazing we will NEVER forget it!! ... We were so blessed to experience this amazing day!!
We had no idea just how good these seats were!! We thought we were getting some good seats in the grandstands or something. They escorted us to the pit area next to the track on the second floor up above. There were tables and chairs and lots of food!! Couldn't even believe it!! They had coloring books for the kids, m&m candies, goldfish, jelly beans, drinks and bubbles to blow. We were given VIP wristbands and pit passes to go anywhere we wanted and see anything we wanted at any time!!!
Joan our escort explained to us that this was a gift from the Austin Hatcher Foundation. It is a foundation for pediatric cancer. Founded by a pediatric spine surgeon who also was a father of a child who died from an aggressive form of cancer. His name was Austin Hatcher Osborn. They called him "Hatch." Their story is a hard one to read but helps you understand why this foundation is what it is!! The foundations goal is to support research towards the diagnoses, treatment and development of a cure for pediatric cancer and to provide support and hope to children and families undergoing treatment as well as to those who have lost children due to cancer. Take a minute and click on Hatch to read their story!! It is through their generosity that we were able to live this dream!!
It was really like we were living a dream!!! The boys can't stop telling everyone about their amazing day!!
Read more about Tucker's exciting day at his family's blog HERE!
Ben
Thanks to Make-A-Wish and a VIP, Ben and his family got to enjoy a Saturday at the NH Speedway. They were lucky enough to be inside a suite, where it was quiet...and warm, with unlimited beverages and food. Ben LOVED watching the races...and the cool crashes.
Thanks for a great family day Make-A-Wish!Tucker
(click Tucker's name to read his amazing kidz story)
Have you ever had one of those days that you keep thinking "this day is so amazing, it is like a dream"? Tucker's family lived it! Here is their story....
We were given tickets from Shriner's Hospital. We received these tickets because Tucker has been a patient at Shriner's. It was so incredibly amazing we will NEVER forget it!! ... We were so blessed to experience this amazing day!!
We had no idea just how good these seats were!! We thought we were getting some good seats in the grandstands or something. They escorted us to the pit area next to the track on the second floor up above. There were tables and chairs and lots of food!! Couldn't even believe it!! They had coloring books for the kids, m&m candies, goldfish, jelly beans, drinks and bubbles to blow. We were given VIP wristbands and pit passes to go anywhere we wanted and see anything we wanted at any time!!!
Joan our escort explained to us that this was a gift from the Austin Hatcher Foundation. It is a foundation for pediatric cancer. Founded by a pediatric spine surgeon who also was a father of a child who died from an aggressive form of cancer. His name was Austin Hatcher Osborn. They called him "Hatch." Their story is a hard one to read but helps you understand why this foundation is what it is!! The foundations goal is to support research towards the diagnoses, treatment and development of a cure for pediatric cancer and to provide support and hope to children and families undergoing treatment as well as to those who have lost children due to cancer. Take a minute and click on Hatch to read their story!! It is through their generosity that we were able to live this dream!!
It was really like we were living a dream!!! The boys can't stop telling everyone about their amazing day!!
Read more about Tucker's exciting day at his family's blog HERE!
Sep 27, 2009
Consider the Lillies
When I was expecting Caleb we knew he had significant challenges. We did not know if he would be born alive, if he would live after birth, or if we would ever get to take him home. This song brought me so much comfort during those months that he was tucked inside. After Caleb was born, a dear friend, who knew how much I loved this song, sent it to my hospital room in her CD player. I listened to it over and over during that tender hospital stay.
This same friend brought me lilies on Caleb's first birthday...
Take special note of the last verse:
Consider the sweet, tender children
Who must suffer on this earth...
The pains of all of them he carried
From the day of his birth.
He clothes the lilies of the field,
He feeds the lambs in His fold,
And he will heal those who trust him,
And make their hearts as gold.
Who must suffer on this earth...
The pains of all of them he carried
From the day of his birth.
He clothes the lilies of the field,
He feeds the lambs in His fold,
And he will heal those who trust him,
And make their hearts as gold.
Sep 26, 2009
Sep 25, 2009
Flu Season Doesn't Have to Be Boring!
Given Cristin's topic of avoiding the flu, I decided it was important to think of some fun things to do during flu season, even if your child's condition requires that you stay indoors. Try these ideas for sure-to-please fun for the entire family!....I just LOVE this 'Bored No More' Box by Lu Bird Baby. I love it because it's simple, but I think the kiddos will have a lot of fun with it!....
And this next idea is right up my alley. I LOVE camping, and when I was a kiddo, my friends and I were all about the indoor camping. Adventures in Diapering and Beyond takes the indoor camping up a notch, not missing a single detail! You've got to head to their blog and check out all their fun ideas, including ambiance, decorations, activities, and food (of course!)....
Sep 24, 2009
Character
Kendall
"Character cannot be developed in ease and quiet. Only through experiences of trial and suffering can the soul be strengthened, vision cleared, ambition inspired, and success achieved."
~Helen Keller
Sep 23, 2009
The Princess & The Monkey
Because it is Mitochondrial Disease Awareness week, I thought it was appropriate to share a story about a child with Mitochondrial Disease. Her mom, Colleen, happens to be a member of the kidz krew.
Bob and I have 2 children, Kennedy (8), Zach (5)..and Bob has twin daughters (15)
Kennedy- went in for ultrasound @ 33wks and found out I had barely any amniotic fluid. She needed to be delivered. I was so nervous (this happened on September 11 also, so everything was crazy). She was delivered the next day after a long quiet night. Zach-I was excited. I was so nervous during ultrasounds making sure all the amniotic fluid was fine. He was delivered full term with no complications.
Kennedy-healthy newborn, but started to see issues when she wasn't meeting milestones of sitting up, crawling, etc. She started seeing specialist around 2 years old, but couldnt find anything but some abnormalities that didnt pinpoint any disorder. She had global delays and ftt, but was fairly healthy. At almost 6 she had a small seizure and started meds. After she turned 6
the seizures increased very quickly and were hard to control. She was hospitalized for almost 2 months. She was diagnosed with Mitochondrial Disease Complex I at that time. She suffered damage, became immobile and couldn't eat or talk anymore. Her seizures were well controlled for one year and now she is back in the hospital with them starting up again.
Zach- healthy child. started noticing speech delays at a year. He did not even babble. At 2 he was diagnosed autistic.
Kennedy has been hard, because initially we thought we had a child with a physical disability (CP) but was healthy. When she started having seizures and became ill, it was hard dealing with the thoughts that she might not be here with us long. It is something we still are dealing with.
Zach- We were not suprised by the diagnosis...from birth we noticed he was content doing things on his own. We knew from doing therapy and his delays that he would probably get that diagnosis.
It is difficult having two children with different disabilites. I have sometimes wanted more children, but the thoughts run through your mind...should we? Is it fair to our children that need so much from us? Is it fair to a new baby? Would this child have a disability?
I just try to think optimistically. I like reading other's blogs, and trying to give my support to others with special needs children. I think that is my coping mechanism. I also have started reviewing some Christian literature more recently and find I like books that are spiritual and are based on special needs.
Kennedy has mitochondrial disease... Information can be found at umdf.org and mitoaction.org. With this disease, you mostly have to treat the symptoms. There is no cure. Most take some supplements like CoQ10 and levocarnitine. We have tried many things for the seizures that have helped a little while, best one that has worked for a long time were combo of phenobarbital and felbatol. We are probably going to be adding something soon.
Bob's daughter Cortnie also has seizures. She was doing good for a while and wasn't on anything, but started having them again a year or two ago. She has had to play around with combos also. Her twin Corie does not have any.
Zach-we mostly just try to deal with communication and behaviors. He has done lots of head banging, but has gotten better by increasing communication skills and distraction. We and school use picture schedules and social stories and they help a lot.
Kennedy loves toddler stuff like Backyardigans, Laurie Berkner band, and Dr. Seuss books. She has a great sense of humor and is a very happy girl. She loves when others get into trouble and laughs so hard. Zach loves music stuff, especially right now he loves singing The Wonderpets song and loves to dance to The Fresh Beat Band. He loves trains and cars and MIng mIng.
Our goals for Kennedy are to stay healthy and get rid of these seizures! With Zach we'd like to see increased communication skills and hope he stays on track academically. He just started Kindergarten. Right now he spends part of the day in special education room because he loses focus in big groups. He is strong academically and we are hoping this helps him stay that way. He too is a very friendly kid, just sometimes is happy playing alone.
My advice to others is to trust your feelings...if you are feeling your toddler is having delays or issues, go ahead and call the doctor. I think early intervention helps so much. It helps educate the parents as well as helping get appropriate services for your child.
Bob and I have 2 children, Kennedy (8), Zach (5)..and Bob has twin daughters (15)
Kennedy- went in for ultrasound @ 33wks and found out I had barely any amniotic fluid. She needed to be delivered. I was so nervous (this happened on September 11 also, so everything was crazy). She was delivered the next day after a long quiet night. Zach-I was excited. I was so nervous during ultrasounds making sure all the amniotic fluid was fine. He was delivered full term with no complications.
Kennedy-healthy newborn, but started to see issues when she wasn't meeting milestones of sitting up, crawling, etc. She started seeing specialist around 2 years old, but couldnt find anything but some abnormalities that didnt pinpoint any disorder. She had global delays and ftt, but was fairly healthy. At almost 6 she had a small seizure and started meds. After she turned 6
the seizures increased very quickly and were hard to control. She was hospitalized for almost 2 months. She was diagnosed with Mitochondrial Disease Complex I at that time. She suffered damage, became immobile and couldn't eat or talk anymore. Her seizures were well controlled for one year and now she is back in the hospital with them starting up again.
Zach- healthy child. started noticing speech delays at a year. He did not even babble. At 2 he was diagnosed autistic.
Kennedy has been hard, because initially we thought we had a child with a physical disability (CP) but was healthy. When she started having seizures and became ill, it was hard dealing with the thoughts that she might not be here with us long. It is something we still are dealing with.
Zach- We were not suprised by the diagnosis...from birth we noticed he was content doing things on his own. We knew from doing therapy and his delays that he would probably get that diagnosis.
It is difficult having two children with different disabilites. I have sometimes wanted more children, but the thoughts run through your mind...should we? Is it fair to our children that need so much from us? Is it fair to a new baby? Would this child have a disability?
I just try to think optimistically. I like reading other's blogs, and trying to give my support to others with special needs children. I think that is my coping mechanism. I also have started reviewing some Christian literature more recently and find I like books that are spiritual and are based on special needs.
Kennedy has mitochondrial disease... Information can be found at umdf.org and mitoaction.org. With this disease, you mostly have to treat the symptoms. There is no cure. Most take some supplements like CoQ10 and levocarnitine. We have tried many things for the seizures that have helped a little while, best one that has worked for a long time were combo of phenobarbital and felbatol. We are probably going to be adding something soon.
Bob's daughter Cortnie also has seizures. She was doing good for a while and wasn't on anything, but started having them again a year or two ago. She has had to play around with combos also. Her twin Corie does not have any.
Zach-we mostly just try to deal with communication and behaviors. He has done lots of head banging, but has gotten better by increasing communication skills and distraction. We and school use picture schedules and social stories and they help a lot.
Kennedy loves toddler stuff like Backyardigans, Laurie Berkner band, and Dr. Seuss books. She has a great sense of humor and is a very happy girl. She loves when others get into trouble and laughs so hard. Zach loves music stuff, especially right now he loves singing The Wonderpets song and loves to dance to The Fresh Beat Band. He loves trains and cars and MIng mIng.
Our goals for Kennedy are to stay healthy and get rid of these seizures! With Zach we'd like to see increased communication skills and hope he stays on track academically. He just started Kindergarten. Right now he spends part of the day in special education room because he loses focus in big groups. He is strong academically and we are hoping this helps him stay that way. He too is a very friendly kid, just sometimes is happy playing alone.
My advice to others is to trust your feelings...if you are feeling your toddler is having delays or issues, go ahead and call the doctor. I think early intervention helps so much. It helps educate the parents as well as helping get appropriate services for your child.
Sep 22, 2009
Try This Tuesday: Try NOT To Get Sick This Flu Season!
I don't like advice, giving or taking it. But, I do have a little experience with keeping a special needs, medically complex, ok blatantly sick baby, healthy and out of the hospital for his first winter. There may be some of you out there, staring down your first winter with an at risk baby. It sucks, I won't lie, but it can be done, and you can stay sane.
Here's what I did that first winter in which we were told to count on at least one admission to the hospital for pneumonia, the admission that never happened.
We'd been told to avoid large groups of people. We have a large family, dozens of cousins, a gaggle of doting aunts, and the Grandmas! How do you tell the Grandmas to keep their hands off the baby!
You tell them:
*If you're sick, anyone in your family is sick, anyone you walked by in the grocery store is sick, any passenger in any car you passed on the road is sick; STAY AWAY FROM MY BABY.
*If you're sure you're healthy, you may visit.
*No kissing the baby. No way. No how. Kissing privileges are for Mommy and Daddy only. Deal with it.
*Wash your hands before you touch the baby.
On second thought, here are some gloves, wear two pair please.
*See that bottle of Purell over there, use it every 30 seconds if you don't mind.
The holidays can be tough. Everyone wants to get together, have a big party, spoil the little ones rotten, shower the littlest ones with love and snuggles and, gah, more kisses.
That first winter, we skipped the holidays. Thanksgiving was a quiet affair, just Dennis, myself and Graham. Christmas was more of the same. Visitors were allowed, a few at a time, after passing the rigorous health screening.
I know we upset some folks. Graham actually didn't seem very sick. It wouldn't have taken much to land him in the hospital though, and our goal was simply keeping him out.
Other precautions that I took;
*Doctor appointments are unavoidable. I had a system with his pediatrician; I'd call ahead that I was on my way so they'd be ready for me as I ran in, bypassing the petri dish waiting room and heading straight for a treatment room.
*Try to get the first appointment of the day, (come on, you're up anyway), so as not to run into any other snot nosed patients.
*If your baby is going to get a Synagis (RSV) shot once a month, the office should be offering it as a separate clinic. Ours was on a Saturday morning, and the appointments were staggered so kids didn't really run into each other. If your doctor isn't doing this, well, they should. Mention it, you know, squeaky wheel and all.
*For therapy appointments, I'd wait in the car until the exact time of the appointment and go right into the therapy room.
*For hospital visits, I'd keep the stroller closed up so no one was tempted to even peek inside and breathe on Graham.
*Call your doctor out if he/she doesn't scrub up before touching your kid. They won't mind, and if they do, tough.
Things that may help during your winter of isolation:
*Clean the house. I know, wicked fun. But the smell of bleach was so comforting to me knowing I was killing all sorts of nasty germs.
*Embrace your inner lazy ass. You won't be leaving the house much. There's only so much cleaning you can do. You won't have many visitors. Watch bad daytime TV. Troll the Internet (fun stuff, not boring medical stuff, you know all that crap already anyway). Learn to cross stitch (this was my favorite). Blab on the phone.
*Exercise? Um, I got some tapes, maybe did them a couple times. If you can do it, rock on with your bad self, I'll be on the couch eating Smartfood.
I'm not going to preach; "make time for yourself". You know this is bull. Keep your baby home and healthy. You'll have time for yourself in your next life.
So Graham just started first grade. He's a grubby little varmint going to school with a bunch of other grubby little varmints. Oh, and they're all Deaf so they're extra handsy. The Swine Flu perfect storm.
I'm not freaking out, really.
He'll get his flu shot, and the H1N1 shot. I'm going to pull the Mommy of SN kid/nurse card and say;
GET YOUR FREAKING FLU SHOT.
Unless there is a real medical reason that you can't (and I know there are several), just get the stupid shot. I can't stand hearing;
"I've never gotten the flu shot and I've never gotten the flu."
Just get the damn shot. Scared of needles? I'm a great shot, all my patients tell me so, come on over, I'll hook you up. The shot is not a 100% guarantee that you won't get some sort of flu, but seriously, don't you want to do everthing you can to keep yourself and your family from getting the flu?
Which leads me to the single most important and simplest thing you can do to stay healthy this flu season:
WASH YOUR HANDS
I bopped on over to the CDC website for their handwashing guidelines. Good stuff for sure, but I had some things to add.
When washing hands with soap and water:
*Wet your hands with clean running water and apply soap. Use warm water if it is available. Not too hot! You don't need to be in pain to kill those germs.
*Rub hands together to make a lather and scrub all surfaces. Rubbing is key, it busts up all those germie cells, pulverizes the little suckers.
*Continue rubbing hands for 20 seconds. Need a timer? Sing Yankee Doodle Dandy, make up dirty words to amuse yourself. If there are children present, the ABC's work.
*Rinse hands well under running water.
*Dry your hands using a paper towel or air dryer. If possible, use your paper towel to turn off the faucet, remember the dirty hand you used to turn it on? Ya. The handle is nasty, don't go touching it with your clean hand ok?
*Even at home, use paper towels. That cloth thing hanging on the cabinet door? When was the last time you washed it? I thought so. If you have tree killing guilt, let your hands air dry, it's better for your skin anyway.
*Try not to touch the door handle to the bathroom, or any other door handle or knob that you encounter anywhere, those things are crawling with germs. Kick doors open whenever you can.
*Remember: If soap and water are not available, use alcohol-based gel to clean hands.
When using an alcohol-based hand sanitizer:
*Apply product to the palm of one hand.
*Rub hands together. I know some people think that the alcohol alone is going to kill all those microbes. Well guess what. It doesn't. You need friction to kill those bad boys. So RUB RUB RUB (that's what he said) like your life depends on it!
*Keep rubbing the product over all surfaces of hands and fingers until hands are dry. I go all the way up to my elbows.
When should you wash your hands?
*Before preparing or eating food. Duh.
*After going to the bathroom. Duh.
*After changing diapers or cleaning up a child who has gone to the bathroom. Duh.
*Before and after tending to someone who is sick. Duh.
*After blowing your nose, coughing, or sneezing. Yes, and the coughing and/or sneezing should be done into your sleeve, not into your hands.
*After handling an animal or animal waste, cause I know you're all picking up dog poop with your bare hands.
*After handling garbage. Um, duh.
*Before and after treating a cut or wound. I know, duh.
Basically, if your hands aren't red, chapped and bleeding by Columbus day, you're not doing it right. Forget your perfectly manicured nails. Cut those things short, slather good lotion on when you can, wear nice cotton gloves at night, and schedule that mani/pedi for Mother's day.
I probably haven't told you anything you don't already know, and I've probably forgotten much.
Please chime in with any thoughts, ideas, or even questions!
Thanks for reading,
Here's what I did that first winter in which we were told to count on at least one admission to the hospital for pneumonia, the admission that never happened.
We'd been told to avoid large groups of people. We have a large family, dozens of cousins, a gaggle of doting aunts, and the Grandmas! How do you tell the Grandmas to keep their hands off the baby!
You tell them:
*If you're sick, anyone in your family is sick, anyone you walked by in the grocery store is sick, any passenger in any car you passed on the road is sick; STAY AWAY FROM MY BABY.
*If you're sure you're healthy, you may visit.
*No kissing the baby. No way. No how. Kissing privileges are for Mommy and Daddy only. Deal with it.
*Wash your hands before you touch the baby.
On second thought, here are some gloves, wear two pair please.
*See that bottle of Purell over there, use it every 30 seconds if you don't mind.
The holidays can be tough. Everyone wants to get together, have a big party, spoil the little ones rotten, shower the littlest ones with love and snuggles and, gah, more kisses.
That first winter, we skipped the holidays. Thanksgiving was a quiet affair, just Dennis, myself and Graham. Christmas was more of the same. Visitors were allowed, a few at a time, after passing the rigorous health screening.
I know we upset some folks. Graham actually didn't seem very sick. It wouldn't have taken much to land him in the hospital though, and our goal was simply keeping him out.
Other precautions that I took;
*Doctor appointments are unavoidable. I had a system with his pediatrician; I'd call ahead that I was on my way so they'd be ready for me as I ran in, bypassing the petri dish waiting room and heading straight for a treatment room.
*Try to get the first appointment of the day, (come on, you're up anyway), so as not to run into any other snot nosed patients.
*If your baby is going to get a Synagis (RSV) shot once a month, the office should be offering it as a separate clinic. Ours was on a Saturday morning, and the appointments were staggered so kids didn't really run into each other. If your doctor isn't doing this, well, they should. Mention it, you know, squeaky wheel and all.
*For therapy appointments, I'd wait in the car until the exact time of the appointment and go right into the therapy room.
*For hospital visits, I'd keep the stroller closed up so no one was tempted to even peek inside and breathe on Graham.
*Call your doctor out if he/she doesn't scrub up before touching your kid. They won't mind, and if they do, tough.
Things that may help during your winter of isolation:
*Clean the house. I know, wicked fun. But the smell of bleach was so comforting to me knowing I was killing all sorts of nasty germs.
*Embrace your inner lazy ass. You won't be leaving the house much. There's only so much cleaning you can do. You won't have many visitors. Watch bad daytime TV. Troll the Internet (fun stuff, not boring medical stuff, you know all that crap already anyway). Learn to cross stitch (this was my favorite). Blab on the phone.
*Exercise? Um, I got some tapes, maybe did them a couple times. If you can do it, rock on with your bad self, I'll be on the couch eating Smartfood.
I'm not going to preach; "make time for yourself". You know this is bull. Keep your baby home and healthy. You'll have time for yourself in your next life.
So Graham just started first grade. He's a grubby little varmint going to school with a bunch of other grubby little varmints. Oh, and they're all Deaf so they're extra handsy. The Swine Flu perfect storm.
I'm not freaking out, really.
He'll get his flu shot, and the H1N1 shot. I'm going to pull the Mommy of SN kid/nurse card and say;
GET YOUR FREAKING FLU SHOT.
Unless there is a real medical reason that you can't (and I know there are several), just get the stupid shot. I can't stand hearing;
"I've never gotten the flu shot and I've never gotten the flu."
Just get the damn shot. Scared of needles? I'm a great shot, all my patients tell me so, come on over, I'll hook you up. The shot is not a 100% guarantee that you won't get some sort of flu, but seriously, don't you want to do everthing you can to keep yourself and your family from getting the flu?
Which leads me to the single most important and simplest thing you can do to stay healthy this flu season:
WASH YOUR HANDS
I bopped on over to the CDC website for their handwashing guidelines. Good stuff for sure, but I had some things to add.
When washing hands with soap and water:
*Wet your hands with clean running water and apply soap. Use warm water if it is available. Not too hot! You don't need to be in pain to kill those germs.
*Rub hands together to make a lather and scrub all surfaces. Rubbing is key, it busts up all those germie cells, pulverizes the little suckers.
*Continue rubbing hands for 20 seconds. Need a timer? Sing Yankee Doodle Dandy, make up dirty words to amuse yourself. If there are children present, the ABC's work.
*Rinse hands well under running water.
*Dry your hands using a paper towel or air dryer. If possible, use your paper towel to turn off the faucet, remember the dirty hand you used to turn it on? Ya. The handle is nasty, don't go touching it with your clean hand ok?
*Even at home, use paper towels. That cloth thing hanging on the cabinet door? When was the last time you washed it? I thought so. If you have tree killing guilt, let your hands air dry, it's better for your skin anyway.
*Try not to touch the door handle to the bathroom, or any other door handle or knob that you encounter anywhere, those things are crawling with germs. Kick doors open whenever you can.
*Remember: If soap and water are not available, use alcohol-based gel to clean hands.
When using an alcohol-based hand sanitizer:
*Apply product to the palm of one hand.
*Rub hands together. I know some people think that the alcohol alone is going to kill all those microbes. Well guess what. It doesn't. You need friction to kill those bad boys. So RUB RUB RUB (that's what he said) like your life depends on it!
*Keep rubbing the product over all surfaces of hands and fingers until hands are dry. I go all the way up to my elbows.
When should you wash your hands?
*Before preparing or eating food. Duh.
*After going to the bathroom. Duh.
*After changing diapers or cleaning up a child who has gone to the bathroom. Duh.
*Before and after tending to someone who is sick. Duh.
*After blowing your nose, coughing, or sneezing. Yes, and the coughing and/or sneezing should be done into your sleeve, not into your hands.
*After handling an animal or animal waste, cause I know you're all picking up dog poop with your bare hands.
*After handling garbage. Um, duh.
*Before and after treating a cut or wound. I know, duh.
Basically, if your hands aren't red, chapped and bleeding by Columbus day, you're not doing it right. Forget your perfectly manicured nails. Cut those things short, slather good lotion on when you can, wear nice cotton gloves at night, and schedule that mani/pedi for Mother's day.
I probably haven't told you anything you don't already know, and I've probably forgotten much.
Please chime in with any thoughts, ideas, or even questions!
Thanks for reading,
Sep 21, 2009
Mitochondrial Disease Awareness Week
(Here is the letter to the editor I submitted to our local paper last year)
Help find cure for mitochondrial disease
Years ago I realized I could deal with the struggles of having a child with a disability.
Until recently I didn't realize how difficult it would be to possibly lose that child to a progressive disease.
My daughter has a mitochondrial disease. Although she had delays, she was doing well and making progress. Within weeks her health went downhill fast. She started having seizures and GI issues that continued to get worse each week.
She spent Christmas in the hospital having seizures and vomiting frequently. The next day she was placed in an induced coma to try to stop the seizures. With our family by her side, we waited until New Year's Day to see our daughter open her eyes. A year before, we never would have imagined we would be anywhere near a hospital.
According to United Mitochondrial Disease Foundation, every 30 minutes, a child is born who will develop a mitochondrial disease. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease.
Exact numbers of children and adults suffering are hard to determine because so many people who suffer from mitochondrial disease are misdiagnosed. We now know the disease is approaching the frequency of childhood cancers.
Lack of awareness is why my family and I never realized the severity of this disease. We never realized that one week our daughter would be healthy and the next she would be fighting for her life.
Sept. 21 through 27 is Mitochondrial Disease Awareness Week. As UMDF raises money for research some children lead healthy lives while others are severely affected and fighting for their lives.
Please help all those fighting, like my daughter, by helping raise awareness. Awareness can raise much-needed money for researchers to find treatments and hopefully a cure for mitochondrial disease.
Colleen B.
About Mitochondrial Disease(info from UMDF)
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
WHY IS RESEARCH SO CRITICAL?
There are no known treatments or cures for mitochondrial disease.
Mitochondria may play a far greater role in human health than scientists and doctors have realized. Any health concern that is an energy problem could be related to the mitochondria.
Further research into the mitochondrion and primary mitochondrial diseases (those due to genetic defect) would benefit millions of people. It would offer hope to the thousands suffering from this debilitating and often fatal disease and provide a broad range of new therapeutic approaches for attempting to treat these other very common and incapacitating illnesses and conditions.
MITOCHONDRIAL DEFECTS ARE A CENTRAL FACTOR IN HUMAN HEALTH AND DISEASE.
Mitochondrial dysfunction is at the core of a surprising range of very common illnesses and conditions, and represents a promising new avenue for their treatment. As the mitochondria are responsible for producing energy, any illness that has an energy problem could be related to the mitochondria. Diseases in which mitochondrial dysfunction have been implicated include:
• Alzheimer’s Dementia, Parkinson’s disease, Huntington disease, Amyotrophic Lateral Sclerosis (ALS), mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke. Over 50 million people in the US suffer from these chronic degenerative disorders. While it cannot yet be said that mitochondrial defects cause these problems, it is clear that mitochondria are involved because their function is measurably disturbed.
• Even autoimmune diseases such as multiple sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to have a mitochondrial basis to illness.
• Mitochondrial dysfunction has been associated with a wide range of solid tumors, proposed to be central to the aging process, and found to be a common factor in the toxicity of a variety of physical and chemical agents.
Help find cure for mitochondrial disease
Years ago I realized I could deal with the struggles of having a child with a disability.
Until recently I didn't realize how difficult it would be to possibly lose that child to a progressive disease.
My daughter has a mitochondrial disease. Although she had delays, she was doing well and making progress. Within weeks her health went downhill fast. She started having seizures and GI issues that continued to get worse each week.
She spent Christmas in the hospital having seizures and vomiting frequently. The next day she was placed in an induced coma to try to stop the seizures. With our family by her side, we waited until New Year's Day to see our daughter open her eyes. A year before, we never would have imagined we would be anywhere near a hospital.
According to United Mitochondrial Disease Foundation, every 30 minutes, a child is born who will develop a mitochondrial disease. Each year, 1,000 to 4,000 children in the United States are born with a mitochondrial disease.
Exact numbers of children and adults suffering are hard to determine because so many people who suffer from mitochondrial disease are misdiagnosed. We now know the disease is approaching the frequency of childhood cancers.
Lack of awareness is why my family and I never realized the severity of this disease. We never realized that one week our daughter would be healthy and the next she would be fighting for her life.
Sept. 21 through 27 is Mitochondrial Disease Awareness Week. As UMDF raises money for research some children lead healthy lives while others are severely affected and fighting for their lives.
Please help all those fighting, like my daughter, by helping raise awareness. Awareness can raise much-needed money for researchers to find treatments and hopefully a cure for mitochondrial disease.
Colleen B.
About Mitochondrial Disease(info from UMDF)
Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.
Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.
WHY IS RESEARCH SO CRITICAL?
There are no known treatments or cures for mitochondrial disease.
Mitochondria may play a far greater role in human health than scientists and doctors have realized. Any health concern that is an energy problem could be related to the mitochondria.
Further research into the mitochondrion and primary mitochondrial diseases (those due to genetic defect) would benefit millions of people. It would offer hope to the thousands suffering from this debilitating and often fatal disease and provide a broad range of new therapeutic approaches for attempting to treat these other very common and incapacitating illnesses and conditions.
MITOCHONDRIAL DEFECTS ARE A CENTRAL FACTOR IN HUMAN HEALTH AND DISEASE.
Mitochondrial dysfunction is at the core of a surprising range of very common illnesses and conditions, and represents a promising new avenue for their treatment. As the mitochondria are responsible for producing energy, any illness that has an energy problem could be related to the mitochondria. Diseases in which mitochondrial dysfunction have been implicated include:
• Alzheimer’s Dementia, Parkinson’s disease, Huntington disease, Amyotrophic Lateral Sclerosis (ALS), mental retardation, deafness and blindness, diabetes, obesity, cardiovascular disease and stroke. Over 50 million people in the US suffer from these chronic degenerative disorders. While it cannot yet be said that mitochondrial defects cause these problems, it is clear that mitochondria are involved because their function is measurably disturbed.
• Even autoimmune diseases such as multiple sclerosis, Sjogrens syndrome, lupus and rheumatoid arthritis appear to have a mitochondrial basis to illness.
• Mitochondrial dysfunction has been associated with a wide range of solid tumors, proposed to be central to the aging process, and found to be a common factor in the toxicity of a variety of physical and chemical agents.
Sep 20, 2009
Kidz Krew Grew By a Few!
I am so thrilled to have added a few more talented and amazing women to 'the krew.' Let's get you all introduced! ....
Amber
Brandon's mom
Blog: Pray for Brandon
Becky
Ben's mom
Blog: Benjamin McKay Orton
Janis is a busy single mom and personal assistant to Austin, an adorable, G-tube fed, Trached and BAHA-wearing toddler. Austin, born at 36 weeks, is diagnosed with Branchio-Oto-Renal (Melnick-Fraser) syndrome. At quick glance, his medical chart is likely to include the following terms: Bilateral Microtia, Aural Atresia, Hemifacial Microsomia, Dysphasia, Micrognathia, GERD, Chronic Lung Disease, Obstructive Sleep Apnea, Hypotonia and Macrocephaly, to name a few.
My name is Jocalyn. I am married to my best friend Justin, and blessed to be called "mom" by Kamden (a gifted and talented 8 year old) and Kendall (my baby with special needs.) I'm a once-party-girl-turned-career-girl-turned-stay-at-home-mom. I am enjoying my life, living in the now, (taking it one second at a time) while trusting in God to show me the way. And, I'm learning to love this new-found "special needs sisterhood" I've been plopped in the middle of...
Welcome, ladies! Thank you for your willingness to contribute and connect with others!
AmberBrandon's mom
Blog: Pray for Brandon
I love my kids and family more than anything.
Becky
Ben's mom
Blog: Benjamin McKay Orton
I am the lucky mother of four amazing children (two in each flavor) and wife to my soul mate who makes me laugh every single day. Our youngest child was born with a very little brain, but incidentally seems to teach us more than we could ever reciprocate. I am very fortunate to be able to stay home with him and be his caregiver. He communicates by showing unconditional love. Benjamin is my constant sidekick and makes my life complete! Aside from mothering, laundering, toilet scrubbing and chauffeuring I LOVE to eat fresh fruit, play basketball, read a good book and organize my closets. I enjoy playing the piano, a good scrabble game, holding newborns, learning new things and filling my home with freshly baked goodies. Being home with family is my favorite place to be. I choose to be happy and relish finding joy in my journey.
Janis is a busy single mom and personal assistant to Austin, an adorable, G-tube fed, Trached and BAHA-wearing toddler. Austin, born at 36 weeks, is diagnosed with Branchio-Oto-Renal (Melnick-Fraser) syndrome. At quick glance, his medical chart is likely to include the following terms: Bilateral Microtia, Aural Atresia, Hemifacial Microsomia, Dysphasia, Micrognathia, GERD, Chronic Lung Disease, Obstructive Sleep Apnea, Hypotonia and Macrocephaly, to name a few.
Janis is looking forward to the day when they can ditch all the doctors, nurses and therapists; in the meantime, she writes about Austin's life on her blog.
Jocalyn
Kendall's mom
Blog: Kendall's Hope
Jocalyn
Kendall's mom
Blog: Kendall's Hope
My name is Jocalyn. I am married to my best friend Justin, and blessed to be called "mom" by Kamden (a gifted and talented 8 year old) and Kendall (my baby with special needs.) I'm a once-party-girl-turned-career-girl-turned-stay-at-home-mom. I am enjoying my life, living in the now, (taking it one second at a time) while trusting in God to show me the way. And, I'm learning to love this new-found "special needs sisterhood" I've been plopped in the middle of...
Welcome, ladies! Thank you for your willingness to contribute and connect with others!
Come Thou Fount
Come, Thou Fount of every blessing,
Tune my heart to sing Thy grace;
Streams of mercy, never ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet,
Sung by flaming tongues above.
Praise the mount! I’m fixed upon it,
Mount of Thy redeeming love.
Sorrowing I shall be in spirit,
Till released from flesh and sin,
Yet from what I do inherit,
Here Thy praises I’ll begin;
Here I raise my Ebenezer;
Here by Thy great help I’ve come;
And I hope, by Thy good pleasure,
Safely to arrive at home.
Jesus sought me when a stranger,
Wandering from the fold of God;
He, to rescue me from danger,
Interposed His precious blood;
How His kindness yet pursues me
Mortal tongue can never tell,
Clothed in flesh, till death shall loose me
I cannot proclaim it well.
O to grace how great a debtor
Daily I’m constrained to be!
Let Thy goodness, like a fetter,
Bind my wandering heart to Thee.
Prone to wander, Lord, I feel it,
Prone to leave the God I love;
Here’s my heart, O take and seal it,
Seal it for Thy courts above.
O that day when freed from sinning,
I shall see Thy lovely face;
Clothed then in blood washed linen
How I’ll sing Thy sovereign grace;
Come, my Lord, no longer tarry,
Take my ransomed soul away;
Send thine angels now to carry
Me to realms of endless day.
Tune my heart to sing Thy grace;
Streams of mercy, never ceasing,
Call for songs of loudest praise.
Teach me some melodious sonnet,
Sung by flaming tongues above.
Praise the mount! I’m fixed upon it,
Mount of Thy redeeming love.
Sorrowing I shall be in spirit,
Till released from flesh and sin,
Yet from what I do inherit,
Here Thy praises I’ll begin;
Here I raise my Ebenezer;
Here by Thy great help I’ve come;
And I hope, by Thy good pleasure,
Safely to arrive at home.
Jesus sought me when a stranger,
Wandering from the fold of God;
He, to rescue me from danger,
Interposed His precious blood;
How His kindness yet pursues me
Mortal tongue can never tell,
Clothed in flesh, till death shall loose me
I cannot proclaim it well.
O to grace how great a debtor
Daily I’m constrained to be!
Let Thy goodness, like a fetter,
Bind my wandering heart to Thee.
Prone to wander, Lord, I feel it,
Prone to leave the God I love;
Here’s my heart, O take and seal it,
Seal it for Thy courts above.
O that day when freed from sinning,
I shall see Thy lovely face;
Clothed then in blood washed linen
How I’ll sing Thy sovereign grace;
Come, my Lord, no longer tarry,
Take my ransomed soul away;
Send thine angels now to carry
Me to realms of endless day.
Sep 19, 2009
He's My Son
He's My Son
by Mark Schultz
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Can You hear me?
Can You see him?
Please don't leave him
He's my son
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