Well it officially has been one year since Nicholas got pneumonia. This was the start of our roller coaster of health for our precious boy. I would have never thought that the outcome would have landed us here, a place so deep that at times there is no light at the end of our tunnel. The pain in my heart for my son is a pain that pierces my heart and continues to strike everyday as I read story's or emails from parents who have been on this path longer than us. I recently was told by a parent that no matter how long its been since the day of the diagnosis, the pain is the same for all, and we are all in this together to help one another.
Nicholas is now back on his nebulizer and antibiotics due to a cold that most people just take Robitussin, cough drops and 3 days later they are feeling better. This brings back last year to me as if it were yesterday! How I hated giving him all those medications, breathing treatments and Shots! He was such a trooper, that now he says "mom is it time for my treatment"? Its very bittersweet to me. I am grateful for all the other moms that i have met along the way, they hold my hand, tell me its ok to cry, tell me to try something different, and don't ever judge the decisions I make for my son's health, but will not hesitate to tell me there is always another way.
I have come to hate the winter and probably will for a long time, one day we will see light and one day he will be 100% healthy.
Newborn
Run for Our Son's Donation
Thursday, December 30, 2010
Friday, December 17, 2010
WHY?
Christmas time brings joy and happiness to most children. My children are playing, laughing, singing Christmas songs and anticipation is high for the day that they may open the gifts wrapped so neat under our bright, decorated tree. My husband and I are so excited as this year both our children "get " Christmas and they know all about SANTA.
Christmas also brings much sadness to many families who have lost a child to DMD, CANCER, or other circumstances. I am constantly reading that another young boy has lost his life to DUCHENNE. This time of year is very hard for our boys, due to colds that turn to pneumonia in as little as a few days. Duchenne attacks the lungs as well as the heart, and as we have learned our son has not been sparred this too.
Many people who read my face book, blogs, emails, sign on my car, or my sweatshirt, think I am going overboard with DUCHENNE awareness. They commonly ask WHY so much? WHY..well my son can not advocate for himself, he can not take himself to the doctor, he can not speak about his disease. WHY is that so many boys have lost there lives and they can not speak, so I will speak for them, I will speak for the boys who WILL be diagnosed, I will speak for the parents who have yet to hear those words that all DMD parents hear..."your son has Duchenne muscular Dystrophy, there is no cure, and he MAY live to be 20, but there is no guarantee.
In the past month 3 boys, that I know of, have passed away leaving a huge hole in there families hearts and leaving a huge hole in our close community. Imagine one Christmas opening gifts with your child and the next....they are gone. I don't want to imagine that or even live that for my son...SO when you ask WHY?! Well I want my son to beat this, I want all these boys to beat this.
A wise man once said " You are only a failure, the day you stop trying"
This Christmas has really touched me in a way that I have never felt before. I don't take life for granted, I don't question WHY, I question HOW. HOW can we cure this disease.
Christmas also brings much sadness to many families who have lost a child to DMD, CANCER, or other circumstances. I am constantly reading that another young boy has lost his life to DUCHENNE. This time of year is very hard for our boys, due to colds that turn to pneumonia in as little as a few days. Duchenne attacks the lungs as well as the heart, and as we have learned our son has not been sparred this too.
Many people who read my face book, blogs, emails, sign on my car, or my sweatshirt, think I am going overboard with DUCHENNE awareness. They commonly ask WHY so much? WHY..well my son can not advocate for himself, he can not take himself to the doctor, he can not speak about his disease. WHY is that so many boys have lost there lives and they can not speak, so I will speak for them, I will speak for the boys who WILL be diagnosed, I will speak for the parents who have yet to hear those words that all DMD parents hear..."your son has Duchenne muscular Dystrophy, there is no cure, and he MAY live to be 20, but there is no guarantee.
In the past month 3 boys, that I know of, have passed away leaving a huge hole in there families hearts and leaving a huge hole in our close community. Imagine one Christmas opening gifts with your child and the next....they are gone. I don't want to imagine that or even live that for my son...SO when you ask WHY?! Well I want my son to beat this, I want all these boys to beat this.
A wise man once said " You are only a failure, the day you stop trying"
This Christmas has really touched me in a way that I have never felt before. I don't take life for granted, I don't question WHY, I question HOW. HOW can we cure this disease.
Tuesday, December 7, 2010
Winter Journey
We survived Disneyland!Again!
This year Nicholas enjoyed Disneyland much more than any other year, and laughed more than he has ever laughed. Our trip was a short one and started off with the Disney trick or treat (saved us money and rode all the rides;}) the next day we went to California adventure and just took our sweet time as Nicholas lead us through the park to each ride. His favorite part was watching the roller coaster blast off and he would yell "woahhh" each time like it was the first time, over and over again.
Sal and Nicholas then attended the MDA Holiday party and they looked so handsome as they walked out the door, I Just had to take pictures! Isabella and I stayed home, due to her getting the first cold of the season. We did not want to take the chance of getting anyone sick, especially any child or adult with Muscular Dystrophy, it could be very dangerous. So we stayed home and spent girl time together.
Soon after Nicholas would get sick and with much luck we took a very aggressive approach and he is feeling much better. This scared both Sal and I as we looked back to our year. It was exactly this time last year that Nicholas would get so sick and was on every type of breathing treatment and steroid and then hospitalized shortly after. I still feel as if we are on that roller coaster that started a year ago. The roller coaster seems to have jumped the track now and we never know when its going to start going out of control again. I hear many people with "normal" kids tell me that its normal and kids need to get colds. Well there kids doesn't have DMD and they don't realize how a simple cold or flue that affects a "normal" child, could be lethal to mine.
We are preparing for Nicholas' birthday party, its a swim party at the Jim Booth swim school. I thought, What a great way for him to play and still be comfortable! Isabella and Nicholas love swimming and the faculty at Jim booth is awesome! Warm, indoor and shallow! They have been taking lessons on Wednesday and Mondays and are already starting to swim!
The last but I feel is very dear to my heart is that I submitted our short story on DMD to Misty Vanderweele's new book that will be released in February 2011. This was so hard for me to express not only my emotions but tell my sons journey from beginning to current without crying or even hoping not to forget something, which I'm sure i left out a lot! I felt this was so important for my story to be herd, so that the person who doesn't know or understand, or live DMD, could get a small glimpse of what its like to think your life is going so perfect and then in a blink of an eye.....its shattered and your dreams, ideas, and vision of your child's future is destroyed by a Disease that I had never even herd of until that terrible day at the neurologist office. Its important for people to understand that it can happen to ANYONE! I have new dreams now and my dreams are to not only raise awareness, but to one day be able to say to my grandchildren, this is what your father has and he is a surviver, I dream that it will be like a broken bone that will mend with treatment. I stand by PPMD's motto ONE VOICE to END DUCHENNE!
This year Nicholas enjoyed Disneyland much more than any other year, and laughed more than he has ever laughed. Our trip was a short one and started off with the Disney trick or treat (saved us money and rode all the rides;}) the next day we went to California adventure and just took our sweet time as Nicholas lead us through the park to each ride. His favorite part was watching the roller coaster blast off and he would yell "woahhh" each time like it was the first time, over and over again.
Sal and Nicholas then attended the MDA Holiday party and they looked so handsome as they walked out the door, I Just had to take pictures! Isabella and I stayed home, due to her getting the first cold of the season. We did not want to take the chance of getting anyone sick, especially any child or adult with Muscular Dystrophy, it could be very dangerous. So we stayed home and spent girl time together.
Soon after Nicholas would get sick and with much luck we took a very aggressive approach and he is feeling much better. This scared both Sal and I as we looked back to our year. It was exactly this time last year that Nicholas would get so sick and was on every type of breathing treatment and steroid and then hospitalized shortly after. I still feel as if we are on that roller coaster that started a year ago. The roller coaster seems to have jumped the track now and we never know when its going to start going out of control again. I hear many people with "normal" kids tell me that its normal and kids need to get colds. Well there kids doesn't have DMD and they don't realize how a simple cold or flue that affects a "normal" child, could be lethal to mine.
We are preparing for Nicholas' birthday party, its a swim party at the Jim Booth swim school. I thought, What a great way for him to play and still be comfortable! Isabella and Nicholas love swimming and the faculty at Jim booth is awesome! Warm, indoor and shallow! They have been taking lessons on Wednesday and Mondays and are already starting to swim!
The last but I feel is very dear to my heart is that I submitted our short story on DMD to Misty Vanderweele's new book that will be released in February 2011. This was so hard for me to express not only my emotions but tell my sons journey from beginning to current without crying or even hoping not to forget something, which I'm sure i left out a lot! I felt this was so important for my story to be herd, so that the person who doesn't know or understand, or live DMD, could get a small glimpse of what its like to think your life is going so perfect and then in a blink of an eye.....its shattered and your dreams, ideas, and vision of your child's future is destroyed by a Disease that I had never even herd of until that terrible day at the neurologist office. Its important for people to understand that it can happen to ANYONE! I have new dreams now and my dreams are to not only raise awareness, but to one day be able to say to my grandchildren, this is what your father has and he is a surviver, I dream that it will be like a broken bone that will mend with treatment. I stand by PPMD's motto ONE VOICE to END DUCHENNE!
Wednesday, November 3, 2010
Lilttle Yellow Bus
When I was growing up, I was oblivious to "Special needs Kids", I never knew that there were kids that even had to be in wheelchairs! My days consisted of Riding one of our many horses, taking care of the pigs, playing sports and swimming at the river. I could do all of these things by myself at the age of 8 with no help!
When my son First came home all the "bad" memories of my childhood flashed front of me, and I knew I could end the bad cycle and he would never have to experience those things...If I had anything to do with it, he was going to have the best time of his life!
So when my son was diagnosed with Duchenne, the "good memories" I had as a child flashed in my brain like a movie.....I couldn't control these experiences, INDEPENDENCE! Would he never have that?!
The school district offered us a bus to and from school, that terrified me! How could my 3 1/2 year old son get on a bus with a total stranger, drive around town and then get off at school by himself!? I kept telling myself, what if he falls, he's too young, he will be scared, and my "I cant's" went on and on and on.... I finally met the driver, who was an absolute ANGEL, she assured me that he would enjoy it and that I shouldn't do anything I wasn't comfortable with...BUT give him a chance to have his freedom and to experience riding the bus..
This morning was our first day of Bus service, so Nicholas and I talked about getting on the bus and Mommy waiting here for him to come home from school. I thought he was going to cry. Well I was wrong!!! He waited patiently at the driveway, when he saw the bus he started yelling"yeah the little yellow bus", "can I ride it please mommy, please"! I knew right then and there, he needs his own memories not MINE!
He got on the little yellow bus with no problems, then Isabella our 19 month old daughter starts crying. She starts saying"no brother, don't go"! I started crying just as bad as her! We waited and waved at him as the bus was driving away and he was looking at us with a smile. I waved and then Isabella waved and said"bye bye brother"
I cant wait for him to come home and tell me all about his day and his experience....because it will be a good memory of the little yellow bus!
When my son First came home all the "bad" memories of my childhood flashed front of me, and I knew I could end the bad cycle and he would never have to experience those things...If I had anything to do with it, he was going to have the best time of his life!
So when my son was diagnosed with Duchenne, the "good memories" I had as a child flashed in my brain like a movie.....I couldn't control these experiences, INDEPENDENCE! Would he never have that?!
The school district offered us a bus to and from school, that terrified me! How could my 3 1/2 year old son get on a bus with a total stranger, drive around town and then get off at school by himself!? I kept telling myself, what if he falls, he's too young, he will be scared, and my "I cant's" went on and on and on.... I finally met the driver, who was an absolute ANGEL, she assured me that he would enjoy it and that I shouldn't do anything I wasn't comfortable with...BUT give him a chance to have his freedom and to experience riding the bus..
This morning was our first day of Bus service, so Nicholas and I talked about getting on the bus and Mommy waiting here for him to come home from school. I thought he was going to cry. Well I was wrong!!! He waited patiently at the driveway, when he saw the bus he started yelling"yeah the little yellow bus", "can I ride it please mommy, please"! I knew right then and there, he needs his own memories not MINE!
He got on the little yellow bus with no problems, then Isabella our 19 month old daughter starts crying. She starts saying"no brother, don't go"! I started crying just as bad as her! We waited and waved at him as the bus was driving away and he was looking at us with a smile. I waved and then Isabella waved and said"bye bye brother"
I cant wait for him to come home and tell me all about his day and his experience....because it will be a good memory of the little yellow bus!
Thursday, October 21, 2010
Tippy Toes
So for those of you that don't know what AFO's are... barely know, lol.
Nicholas' neurologist recommended he get AFO's to wear at night due to his tip-toe walking that started shortly before he was hospitalized this January 2010.
(Late onset tiptoe walking--defined as tiptoeing which begins 4 or more months after a heel-toe gait has been established-usually indicates a neuromuscular problem such as CharcotMarie-Tooth disease, Duchenne's muscular dystrophy, or a spinal cord anomaly, and requires evaluation by a pediatric neurologist)
Many people who did not understand his disease suggested to me that Nicholas was most likely Autistic due to the toe walk, which we know is not the case(although not uncommon in Duchenne boys) thanks to our MDA clinic who has full team approach to asses your child.
The Neurologist suggested we get in contact with CCS (California Children's Service), they would give us services he needed and prescribe the AFO's. Wells its been 4 looooonnggg months and I keep calling them every week...his case is still on some unknown persons desk in Sacramento with no response.
Sooo being the impatient mother that I am I made an appointment at Hanger in Salinas, ca. myself....
They got us in quick, the office was a Little confused on what he needed, but figured it out quick. First they wrapped his leg's in a cast, then once it dried the Orthosist cut it off. Nicholas did NOT like the "yuckies"(wet cast). One week latter Nicholas got his new AFO's with cool race cars and trucks on them. He was actually really excited. He layed down when we got home, a normal routine for him, and asked me "Mommy can I have may car brace's"? He lets me put them on with no problems...so far.
It has been 3 days of use, and Tippy toes are not so tippy anymore. Yesterday was the FIRST day in months that he hasnt complained his legs hurt! He hasn't cried as much either! yeah!
The best part is...my insurance paid 100%!!!! wooo hoo!
so what exactly are AFO's? Hope this helps;)
Ankle-foot orthoses (AFOs) are orthoses or braces, usually plastic, encompassing the ankle joint and all or part of the foot. AFOs are externally applied, and are intended to control position and motion of the ankle, compensate for weakness, or correct deformities.[4] They control the ankle directly, and can be designed to control the knee joint indirectly as well
Nicholas' neurologist recommended he get AFO's to wear at night due to his tip-toe walking that started shortly before he was hospitalized this January 2010.
(Late onset tiptoe walking--defined as tiptoeing which begins 4 or more months after a heel-toe gait has been established-usually indicates a neuromuscular problem such as CharcotMarie-Tooth disease, Duchenne's muscular dystrophy, or a spinal cord anomaly, and requires evaluation by a pediatric neurologist)
Many people who did not understand his disease suggested to me that Nicholas was most likely Autistic due to the toe walk, which we know is not the case(although not uncommon in Duchenne boys) thanks to our MDA clinic who has full team approach to asses your child.
The Neurologist suggested we get in contact with CCS (California Children's Service), they would give us services he needed and prescribe the AFO's. Wells its been 4 looooonnggg months and I keep calling them every week...his case is still on some unknown persons desk in Sacramento with no response.
Sooo being the impatient mother that I am I made an appointment at Hanger in Salinas, ca. myself....
They got us in quick, the office was a Little confused on what he needed, but figured it out quick. First they wrapped his leg's in a cast, then once it dried the Orthosist cut it off. Nicholas did NOT like the "yuckies"(wet cast). One week latter Nicholas got his new AFO's with cool race cars and trucks on them. He was actually really excited. He layed down when we got home, a normal routine for him, and asked me "Mommy can I have may car brace's"? He lets me put them on with no problems...so far.
It has been 3 days of use, and Tippy toes are not so tippy anymore. Yesterday was the FIRST day in months that he hasnt complained his legs hurt! He hasn't cried as much either! yeah!
The best part is...my insurance paid 100%!!!! wooo hoo!
so what exactly are AFO's? Hope this helps;)
Ankle-foot orthoses (AFOs) are orthoses or braces, usually plastic, encompassing the ankle joint and all or part of the foot. AFOs are externally applied, and are intended to control position and motion of the ankle, compensate for weakness, or correct deformities.[4] They control the ankle directly, and can be designed to control the knee joint indirectly as well
Wednesday, October 20, 2010
MDA Seminar
On Sunday my husband and I attended the MDA "ask the experts" learned a lot, Dr. McDonald from Davis touched base on new Trails....all so overwhelming, but yet hopeful.
We met a young man and his mother that gave us such inspiration and peace that I am forever changed. This young man traveled here from France to attend college and work. In France we learned, that they pay you to STAY HOME and not LIVE IN SOCIETY. He has graduated from a well known university and is now working in the infamous Silicon valley. This to me was amazing that he had so much drive, he got an opportunity an he took it! The sacrifice that his family has made to leave there country and let him LIVE the way he wants to.
His mother taught me that its more important to live in the "now" and not what is to be. Our cards are delt to us so we need to play the game the best we can, even though we know we know the outcome, have fun playing while we can.
Even though we had a language barrier we still understood each other and i have new friends that I am forever grateful to, they don't realize that they taught me to live NOW...
on another note, this young mans form of muscular dystrophy is unknown, he has never been able to walk and he was the happiest person n the room!
We met a young man and his mother that gave us such inspiration and peace that I am forever changed. This young man traveled here from France to attend college and work. In France we learned, that they pay you to STAY HOME and not LIVE IN SOCIETY. He has graduated from a well known university and is now working in the infamous Silicon valley. This to me was amazing that he had so much drive, he got an opportunity an he took it! The sacrifice that his family has made to leave there country and let him LIVE the way he wants to.
His mother taught me that its more important to live in the "now" and not what is to be. Our cards are delt to us so we need to play the game the best we can, even though we know we know the outcome, have fun playing while we can.
Even though we had a language barrier we still understood each other and i have new friends that I am forever grateful to, they don't realize that they taught me to live NOW...
on another note, this young mans form of muscular dystrophy is unknown, he has never been able to walk and he was the happiest person n the room!
Tuesday, October 12, 2010
The Begining of our story...sorda
Well I finally did it, a blog. My main objective is to advocate and raise awareness of DUCHENNE MUSCULAR DYSTROPHY. The Duchenne community is small but strong and very supportive, we are blessed to have been welcomed with open arms, suggestons and most of all HOPE!
Our Story begins as most Duchenne parents, our son got really sick. Janurary 2009 Nicholas was hospitalized for Pnemonia. His Liver enzimes were very high and had every test in the book done. When in the hospital Nicholas started limping, he complained his stomach hurt and his legs hurt. The stomach issue was addressed and he was referred to a Gastrointerologist. When he was released he was then referred to LPCH to a Hemotologist.
Nicholas was diagnoised with Bheta Thalassemia Intermedia (rare blood disorder) almost 4 months of hospital visits and appointments with tons of specialist. We thought we had our answer...but the hemotologist was not convinced the high liver enzime was related to the thallassemia. The GI decdided to do a liver biopsy, it came back normal....
One last lab needed to be done, I was told that most likely this will come back negative, just add the lab to his next blood draw, which was every few weeks due to the thallassemia, so we waited.
About one month later, we had our check with hemotology, and before you go to your apptointment they ask you for labs, so i added the lab slip......Nicholas hemotology appontment went well, still no answer on why his liver enzme was elevated and in the back of my mind I wasnt accepting "Maybe thats just him", I knew there was an answer weather i wanted to hear it or not it was out there.
The next day was June 2nd, I was doing some quick grocery shopping before picking the kids up from daycare and my phone rang, it said WITHELD, which ment one thing...it was one of his doctors. On the other end i herd a crack;ed voice, it was Nicholas' GI, She said I have somthing to tell you......The labs came back for Muscular Dystrophy and I cant tell you what kind, there are several and I have already made a referral for you to take him to see a Neurologist at LPCH. She said to me "I am so sorry and what ever I can do, I will". At that moment I dropped to my knees right in the middle of Savemart! I left my groceries and rushed to get my children.
As the days went by, my phone did not stop ringing, every doctor my son saw was calling. This scared me, was told not to google anything until we saw the neurologist.
Genetic test were done and sent to Boston, they came back quick (as per Neurologist, ussually takes 6 weeks, he called in 3 weeks). It was confirmed...DUCHENNE MUSCULAR DYSTROPHY, the leading genetic killer of boys!!!
It has been 4 months since we recieved his diagnosis and I am a wreck, but I am determand to do SOMTHING! I love my son and I will fight until the battle is won, until we END DUCHENNE.
Our Story begins as most Duchenne parents, our son got really sick. Janurary 2009 Nicholas was hospitalized for Pnemonia. His Liver enzimes were very high and had every test in the book done. When in the hospital Nicholas started limping, he complained his stomach hurt and his legs hurt. The stomach issue was addressed and he was referred to a Gastrointerologist. When he was released he was then referred to LPCH to a Hemotologist.
Nicholas was diagnoised with Bheta Thalassemia Intermedia (rare blood disorder) almost 4 months of hospital visits and appointments with tons of specialist. We thought we had our answer...but the hemotologist was not convinced the high liver enzime was related to the thallassemia. The GI decdided to do a liver biopsy, it came back normal....
One last lab needed to be done, I was told that most likely this will come back negative, just add the lab to his next blood draw, which was every few weeks due to the thallassemia, so we waited.
About one month later, we had our check with hemotology, and before you go to your apptointment they ask you for labs, so i added the lab slip......Nicholas hemotology appontment went well, still no answer on why his liver enzme was elevated and in the back of my mind I wasnt accepting "Maybe thats just him", I knew there was an answer weather i wanted to hear it or not it was out there.
The next day was June 2nd, I was doing some quick grocery shopping before picking the kids up from daycare and my phone rang, it said WITHELD, which ment one thing...it was one of his doctors. On the other end i herd a crack;ed voice, it was Nicholas' GI, She said I have somthing to tell you......The labs came back for Muscular Dystrophy and I cant tell you what kind, there are several and I have already made a referral for you to take him to see a Neurologist at LPCH. She said to me "I am so sorry and what ever I can do, I will". At that moment I dropped to my knees right in the middle of Savemart! I left my groceries and rushed to get my children.
As the days went by, my phone did not stop ringing, every doctor my son saw was calling. This scared me, was told not to google anything until we saw the neurologist.
Genetic test were done and sent to Boston, they came back quick (as per Neurologist, ussually takes 6 weeks, he called in 3 weeks). It was confirmed...DUCHENNE MUSCULAR DYSTROPHY, the leading genetic killer of boys!!!
It has been 4 months since we recieved his diagnosis and I am a wreck, but I am determand to do SOMTHING! I love my son and I will fight until the battle is won, until we END DUCHENNE.
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