The last few months have been a roller coaster. Nicholas chose to go to Walt Disney World for his Make-A-Wish Trip, Duchenne was not invited on this trip and it was stress free! Nicholas had an episode on the airplane that looked like a full body muscle spasm/cramp and he seemed unaware of his surroundings when we landed. He is now being referred over for an EEG since this is not the first time this has happened. I am praying that we do not have more shoved onto our already full plate. Our summer has been non-stop and clinic has been every week along with our never ending therapy. We have been camping almost every weekend and recently this last weekend we had a nice long weekend at the lake with my side of the family.
This Sunday evening when we got home, we all crashed out from being so exhausted. I woke up in the middle of the night, sitting up as fast as I could, couldn't breathe and was crying. I got a cup of Almond Milk and sat down trying to re-visit what my Nightmare was about and WHY I was so disturbed. So Here is what I recalled...
I was on an Island where my husband met me on the beach where we were walking and holding hands. My family was dancing and laughing and soon all my friends joined them, but we (my husband and I) were on the shore line, which seemed to be perfect and we weren't getting wet. Soon I see my son in the water with water wings on, the cheap kind that can pop at any minute. He was floating under glass in the ocean. He was laughing and smiling and having a good time but I couldn't help him through the glass. No one could see that the glass was keeping him in the water and that the water wings were going to pop, just wasn't sure when they would pop. Everyone around me was him having a good time, but they didn't see the glass or the thinning water wings. I was desperately trying to get the glass up or break it before they popped or he drowned. I looked in the distance and I saw all of my Duchenne Family throwing fishing lines with large weights on them into the water. The weights were only breaking some of the glass where I saw some boys, but not mine being saved.
Later in the morning I realized that the Glass was Duchenne, the weights were drugs that were specific to deletions. This has been on my mind more than I knew it. I am so beyond scared that my son wont get a therapy in his time. He doesn't qualify for any drug trials due to either his age, behavior or that he has other genetic diagnosis. I know we are not alone, I know that other families are waiting like us, BUT it doesnt make the pain and fear go away any less or more. Its pain and fear non-the-less and no matter what anyone says of does, its there until I am told a CURE is found.
Newborn
Run for Our Son's Donation
Tuesday, July 16, 2013
Thursday, March 21, 2013
Duchenne, Behavior, Kinder and My son
Kingarten has opened a whole new avenue for Nicholas. His behaviors are deemed as unacceptable by his school and to be honest, I just think they dont know how to handle them.
Nicholas is a sweet, caring, gentle creature that has a smile on his face no matter what happened 5 minutes ago. He will always welcome others with a hug of which I encourage because we aren't sure how much longer he will be able to "hug", special thanks to our friend "Duchenne". Nicholas recently has been getting therapy from Lucille Packards children's Hospital at Stanford. We chose Pivotal Response Therapy with the help of his lead Psychologist. His PRT is working out GREAT. He is being very flexible, finding his own solutions and completing tasks on request. The school on the other hand initially deemed his recently new verbal requests and demands as another defiant behavior, we deemed that as a step forward, he wasn't screaming anymore! Im assuming this is because they are so use to flashing a picture of a stick man in front of a child then giving them a lollipop when they complete the deemed task. Needless to say he is moving mountains and I am proud regardless what the districts behavior specialist feels. His psychology team feels he is doing excellent and is very proud of his flexibility.
In the midst of his behavior at school, they had neglected his physical needs. He has been doing P.E. which includes a stretching band (a big no no for Duchenne) and he was jumping on the trampoline another No No. My husband and I had no idea he was doing these activities at school, assuming the adaptive PE was being followed through. Nicholas had been crying of leg pains at school and at home, we now know why. The OI re-addressed his do's and don'ts with the school so I didn't have to go through all the crying, frustration all over again. This is the exact reason WHY I am always so worried and at the school for hours.
School has been such an important part of Nicholas' day, he enjoys learning (in his own way), and he loves reading of which he has recieved 3 reading awards this year. Recently he recieved an award for math. We currently are searching new options for 1st grade and in discussions with his Psycology team to finalize our decision.
Duchenne OH Duchenne! the past few months Nicholas has requested to utilize his adaptive stroller daily and well, it is just too small. CCS has ordered him a new convaid and he was so excited to pick out the push chair, colors and accessories with his Physical Therapist. We also let him pick out his AFO's. I believe its important to allow them to be "THE" decision maker when it comes to choices. They dont get to choose this life, but allowing them to choose what it looks like.
This morning I had a mixed blessing thanks to PRT and Duchenne. He got dressed and was ready to go, I saw he had a really difficult time getting up from the floor. As he was getting up he said "A little help please!" I ran to assist him before he fell. We then decided to do a little stretching to get us moving, he felt really tight and was uncomfortable. He then told me it was time to go, so we were out the door. I opened the doors to the van and Bella hopped right in, buckled up and as I walked to Nicholas's side I herd him ask for help again. This time he was waiting patiently (thank you PRT), but needed help just to crawl into the van (F&*^ you Duchenne). This time he didnt want a little push with assistance, he wanted to be picked up and placed into his seat (again F%^& you Duchenne). He looked at me with his big beautiful smile, big bright brown eyes and said "Mommy, Thank you so much! I love you to the moon"! I kissed him on his head and then bucked him in. We were late for school and I didnt have time to think about what had just happened, afterall its just our life. I then started recalling the day before at his school. 2 women standing in the same place everyday at his school waiting for their children to get out were staring at us through the fence as I was pushing him in his chair. I had that feeling when someone is watching you and it feels like they are shooting you with Superman rays. I kept walking and unfortunately we had to walk right past them to get into our car. The younger woman(maybe in her 20's) says to the older woman " Look, he isnt a baby! I told you!" Those words ran through my brain over and over again until we got to the school this morning. When we got to the school, I got Bella out and Nicholas said "Mommy Im going to make good choices and wait until you get sister and my stroller out because I need help. My legs hurt very bad today". I was so happy he used his words and waited like a champ! BUT on the inside I was fighting back the Niagra Falls of tears.
I know I am rambling so I will rap it up. I am very proud of the mountains Nicholas is moving with his behavior. I have such mixed feelings that now my beautiful 6 year old boy can tell me his pain, his feelings and yet he still has a smile. One step forward in behavior, 2 steps back Duchenne.
And last, Nicholas and I have completed another race together. The race picture below is from LPCH summer scamper. I had the pleasure of having a special friend run with Nicholas and I at She.is.Beautiful in Santa Cruz this last weekend. The view of the Monterey Bay was crystal clear and our path was healing. He told me that he loves racing and this race was the best DAY EVER!
Nicholas is a sweet, caring, gentle creature that has a smile on his face no matter what happened 5 minutes ago. He will always welcome others with a hug of which I encourage because we aren't sure how much longer he will be able to "hug", special thanks to our friend "Duchenne". Nicholas recently has been getting therapy from Lucille Packards children's Hospital at Stanford. We chose Pivotal Response Therapy with the help of his lead Psychologist. His PRT is working out GREAT. He is being very flexible, finding his own solutions and completing tasks on request. The school on the other hand initially deemed his recently new verbal requests and demands as another defiant behavior, we deemed that as a step forward, he wasn't screaming anymore! Im assuming this is because they are so use to flashing a picture of a stick man in front of a child then giving them a lollipop when they complete the deemed task. Needless to say he is moving mountains and I am proud regardless what the districts behavior specialist feels. His psychology team feels he is doing excellent and is very proud of his flexibility.
In the midst of his behavior at school, they had neglected his physical needs. He has been doing P.E. which includes a stretching band (a big no no for Duchenne) and he was jumping on the trampoline another No No. My husband and I had no idea he was doing these activities at school, assuming the adaptive PE was being followed through. Nicholas had been crying of leg pains at school and at home, we now know why. The OI re-addressed his do's and don'ts with the school so I didn't have to go through all the crying, frustration all over again. This is the exact reason WHY I am always so worried and at the school for hours.
School has been such an important part of Nicholas' day, he enjoys learning (in his own way), and he loves reading of which he has recieved 3 reading awards this year. Recently he recieved an award for math. We currently are searching new options for 1st grade and in discussions with his Psycology team to finalize our decision.
Duchenne OH Duchenne! the past few months Nicholas has requested to utilize his adaptive stroller daily and well, it is just too small. CCS has ordered him a new convaid and he was so excited to pick out the push chair, colors and accessories with his Physical Therapist. We also let him pick out his AFO's. I believe its important to allow them to be "THE" decision maker when it comes to choices. They dont get to choose this life, but allowing them to choose what it looks like.
This morning I had a mixed blessing thanks to PRT and Duchenne. He got dressed and was ready to go, I saw he had a really difficult time getting up from the floor. As he was getting up he said "A little help please!" I ran to assist him before he fell. We then decided to do a little stretching to get us moving, he felt really tight and was uncomfortable. He then told me it was time to go, so we were out the door. I opened the doors to the van and Bella hopped right in, buckled up and as I walked to Nicholas's side I herd him ask for help again. This time he was waiting patiently (thank you PRT), but needed help just to crawl into the van (F&*^ you Duchenne). This time he didnt want a little push with assistance, he wanted to be picked up and placed into his seat (again F%^& you Duchenne). He looked at me with his big beautiful smile, big bright brown eyes and said "Mommy, Thank you so much! I love you to the moon"! I kissed him on his head and then bucked him in. We were late for school and I didnt have time to think about what had just happened, afterall its just our life. I then started recalling the day before at his school. 2 women standing in the same place everyday at his school waiting for their children to get out were staring at us through the fence as I was pushing him in his chair. I had that feeling when someone is watching you and it feels like they are shooting you with Superman rays. I kept walking and unfortunately we had to walk right past them to get into our car. The younger woman(maybe in her 20's) says to the older woman " Look, he isnt a baby! I told you!" Those words ran through my brain over and over again until we got to the school this morning. When we got to the school, I got Bella out and Nicholas said "Mommy Im going to make good choices and wait until you get sister and my stroller out because I need help. My legs hurt very bad today". I was so happy he used his words and waited like a champ! BUT on the inside I was fighting back the Niagra Falls of tears.
I know I am rambling so I will rap it up. I am very proud of the mountains Nicholas is moving with his behavior. I have such mixed feelings that now my beautiful 6 year old boy can tell me his pain, his feelings and yet he still has a smile. One step forward in behavior, 2 steps back Duchenne.
And last, Nicholas and I have completed another race together. The race picture below is from LPCH summer scamper. I had the pleasure of having a special friend run with Nicholas and I at She.is.Beautiful in Santa Cruz this last weekend. The view of the Monterey Bay was crystal clear and our path was healing. He told me that he loves racing and this race was the best DAY EVER!
Thursday, November 1, 2012
Kindergarten 2012
Well its now November 1st and we have completed our annual IEP. Nicholas started Kindergarten this year and it was so bittersweet for me. He is academically growing and so interested in learning. He has won super reader awards for 2 months in a row now and he just keeps going. The year started off a little bumpy as the school did not fully understand when I said he does not transition well, yet seeks for structure. It has taken 3 months for the "school" to adjust to him.
His behavior issues that were being reported were valid, yet not addressed by the school and I was growing more concerned. I had this feeling since Nicholas was very young that his over stimulation and need for structure was so much more than just being a very clean and "exact" child. I addressed my concerns with his Neurologist and psychologist once more due to his disruption at school increasing and he didn't seem like the happy kid we knew so well over the summer break. I had waited for an appropriate referral for an assessment from the Autism clinic at Stanford, then our Doctors called them and got us right in. He showed he was a very high functioning child yet on the spectrum of Autism. This was not really a surprise to me, but yet another knife in my heart. We now are dealing with Duchenne, B-Thalassemia, Gilbert's syndrome, OCD, Autism Spectrum and ADHD, Not to mention his Asthma and odd outbreaks of random rashes. Surprisingly we are hanging in there!
He started another medication in hopes to allow him to have quality of life, Tenex. Its other name is guacafine and we were told it was a 50/50 chance it may or may not work. His psychologist was in hopes that it would at least allow him to sleep as he has been waking up frequently at night or not going to sleep at all. Which can put a real damper on daily life. So far so good! Transitions have been smoother and he is sleeping better, a few night terrors though.
We are now starting PRT at Stanford with a very down to earth understanding Doctor who "gets him"! Although these issues are so hard to deal with, I feel blessed. I feel blessed that he is oblivious to other children who make fun of him, because he really doesn't care. I feel blessed to know so many doctors/scientist on a personal level who specialize in his disorders. These are things that many don't see or have. I am hopeful that one day I can just simply focus on my child for who he is and not always his medical health. One day at a time and one step after another.
His behavior issues that were being reported were valid, yet not addressed by the school and I was growing more concerned. I had this feeling since Nicholas was very young that his over stimulation and need for structure was so much more than just being a very clean and "exact" child. I addressed my concerns with his Neurologist and psychologist once more due to his disruption at school increasing and he didn't seem like the happy kid we knew so well over the summer break. I had waited for an appropriate referral for an assessment from the Autism clinic at Stanford, then our Doctors called them and got us right in. He showed he was a very high functioning child yet on the spectrum of Autism. This was not really a surprise to me, but yet another knife in my heart. We now are dealing with Duchenne, B-Thalassemia, Gilbert's syndrome, OCD, Autism Spectrum and ADHD, Not to mention his Asthma and odd outbreaks of random rashes. Surprisingly we are hanging in there!
He started another medication in hopes to allow him to have quality of life, Tenex. Its other name is guacafine and we were told it was a 50/50 chance it may or may not work. His psychologist was in hopes that it would at least allow him to sleep as he has been waking up frequently at night or not going to sleep at all. Which can put a real damper on daily life. So far so good! Transitions have been smoother and he is sleeping better, a few night terrors though.
Monday, July 30, 2012
CIRM Stem Cell Research Updates: Patient advocates speak in support of disease team...
Duchenne Advocates Voices herd!
Monday, June 4, 2012
Begining of Summer 2012
It's June and Summer has begun! Nicholas official last day of Pre-School was last Thursday and It was a little sad for me. He will be in summer school starting this week, but its only an hour of "play" a day. He will officially start Kindergarten in August! YIKES how time fly's!
We kicked our summer off with a mini camping trip to Lake Nacimento. We met my dear Friend Sparra and her little family of 3 on Saturday and my Aunt & Uncle brought the boat down. The weather started off very windy but by the end of the weekend it was in the 100's without a breeze in sight.
My children were so excited to be on my uncles boat. They both look forward to every trip to the lake and this year my uncle let them drive. Nicholas loved spending time with my Aunt and Uncle on the boat he had a smile from ear to ear.
These little trips to the lake are very meaningful to our family as we never know when it will be our last trip as a family. I always find myself inspecting all the dock's as we speed past them or checking out the pontoon boats to see if there is a safe ramp or easy access. Even a few steps or stairs could mean we would have to miss a trip to avoid having to carry our 47lb child up and down or holding him to avoid a huge tumble (Nicholas had an accident the day before leaving on our trip just by simply rolling off the couch onto his face. He doesn't have the speed to place his hands in front of his face to break falls).
Summer time brings a lot of excitement to my whole family because of the lake, beach and water sports. I hope that we can have many more trips before Duchenne grabs a hold of him. Memories are so important and maybe just as important as Independence.
We kicked our summer off with a mini camping trip to Lake Nacimento. We met my dear Friend Sparra and her little family of 3 on Saturday and my Aunt & Uncle brought the boat down. The weather started off very windy but by the end of the weekend it was in the 100's without a breeze in sight.
My children were so excited to be on my uncles boat. They both look forward to every trip to the lake and this year my uncle let them drive. Nicholas loved spending time with my Aunt and Uncle on the boat he had a smile from ear to ear.
These little trips to the lake are very meaningful to our family as we never know when it will be our last trip as a family. I always find myself inspecting all the dock's as we speed past them or checking out the pontoon boats to see if there is a safe ramp or easy access. Even a few steps or stairs could mean we would have to miss a trip to avoid having to carry our 47lb child up and down or holding him to avoid a huge tumble (Nicholas had an accident the day before leaving on our trip just by simply rolling off the couch onto his face. He doesn't have the speed to place his hands in front of his face to break falls).
Summer time brings a lot of excitement to my whole family because of the lake, beach and water sports. I hope that we can have many more trips before Duchenne grabs a hold of him. Memories are so important and maybe just as important as Independence.
Tuesday, February 14, 2012
One of those Days
It's been a while since my last log and a lot has happened since then...Where oh where to start?
We went to Cincinnati Children's Hospital and met with the Infamous Dr. Brenda Wong, who is not only super duper intelligent but her bedside manner is wonderful! I knew from the moment we entered the front door of CCH that we made the right decision to fly across the US! Nicholas had several test including a DEXA scan and bone density test. Which showed he was at 3 1/2 years, one year behind. Dr. Wong was very impressed with Nicholas walk test and feels he has a mild phenotype of Duchenne of which looked to be Becker's, yet his deletions proved otherwise. She still advised us that it cannot predict his progression, but to continue with our supplements and she added a few more to our list. We also chose to start him on Deflazacort of which he is tolerating very well, a little pricey but worth his sanity Vs. prednisone.
Nicholas Behavior was noted to be typical of a Duchenne boy and he did show anxiety, over-stimulation, and lots of sensory overload (lots of need for pressure IE: hugs, tip toe walk). Serial casting was talked about and we are in the process of getting that pre-authorized at Stanford LPCH.
We then met with Dr. John Day who so happen to take over the open position of MDA Neurologist at Stanford. I am very happy with Stanford's choice to bring him here, he is very supportive and educated in Duchenne. We are feeling very blessed to have him right here and only an hour away! He will now manage all of Nicholas care.
Christmas seemed to be right around the corner and we were excited that PPMD would have a F.A.C.E.S group for NorCal. This was a big step for CA! We have been so limited in care, support, and now we were getting a whole new package! So exciting!
Nicholas had an appointment with Dr. Nancy Yaun in Pulmonology(whom is another great MDA Dr.), we received a call asking to re-schedule his appointment so we could meet with Dr. Bu and Dr. Yaun. I had then asked what the results were for Nicholas' sleep study, they "forgot" to call me and THANK GOD I remembered to ask! His results showed Moderate Sleep Apnea and wanted to remove his tonsils and a few other test while he was under IV. Needless to say his surgery went well, he was not happy after. But is healing well and just had his follow up sleep study so we hope it's now clear of Apnea...
Unfortunatly right before Christmas both Nicholas and Bella got a very bad virus with vomiting. Everyone seemed to be doing better, then on christmas morning Nicholas had his very first Seizure! It was so very scarey! He woke up and asked to take a bath before we left to go see family. He vomited and while in the bath he seemed very spaced out, he acted as if he was going to pass out. He got out of the tub, walked into the living room, picked up a lego and his eyes rolled back! his hand went into a fist and then started shaking. after a minute he dropped to the floor and passed out! We jumped in the car to the ER at Stanford as I don't trust our local hospital with my dog. I called every doctor he had at stanford and as soon as we walked in they took us straight back into a room, passed all the people waiting in the ER waiting room and an ER Doctor was waiting for us. Nicholas was very dehydrated and took a whole bag of saline. He was starting to "wake up" from the seizure when we go into the room. He looked at the nurse and said" OH NO it's christmas at the hospital!" The nurses eyes got teary and told him that she was sorry but they had a present for him! She came back with Lightning McQueen and Matter cars. We finally got to go home after blood work and fluid. Nicholas slept for 2 days straight. The one thing that made me sad was that we spent Christmas alone, no one came by, no christmas Dinner and I was a wreck while my son slept off the affects of his seizure and virus.
Yesterday and today I have been on the phone, exchanging emails just to get Nicholas evaluated for Serial casting and the behavioral team to monitor his prozac. It seems to not be clear to anyone what the protocol for a Duchenne boy is, but it is clear what he needs. So far there are no protocols at the local service providers we go to, so we have had to go back up to Stanford and request referrals again. It's been a little stressful and overwhelming to explain to each person on the phone "why" he needs what he needs and "What" his diagnosis is. I find it so upsetting that these "professionals" don't know what Duchenne is and constantly repeat back to me "So he has MS?", it's a little frustrating...
To top the day, I found out a little girl that goes to Nicholas' school had passed away this past weekend. My instant reaction was to cry, even though I did not know the child my heart was broke. To think that your child could be gone in an instant is not a thought I want to think, but it's our reality. The fact that Nicholas has Duchenne already steals time from us. His life weighs on my mind everyday, every hour of every minute. I do realize Children with Duchenne are living to be young men, but they also don't have other genetic disorders that doctors have NO idea how they will affect one another like Nicholas. It weighs heavy on my heart. Some days I don't want to go to bed, it means one more day gone. Other days its a great memory made that I will never forget.
We went to Cincinnati Children's Hospital and met with the Infamous Dr. Brenda Wong, who is not only super duper intelligent but her bedside manner is wonderful! I knew from the moment we entered the front door of CCH that we made the right decision to fly across the US! Nicholas had several test including a DEXA scan and bone density test. Which showed he was at 3 1/2 years, one year behind. Dr. Wong was very impressed with Nicholas walk test and feels he has a mild phenotype of Duchenne of which looked to be Becker's, yet his deletions proved otherwise. She still advised us that it cannot predict his progression, but to continue with our supplements and she added a few more to our list. We also chose to start him on Deflazacort of which he is tolerating very well, a little pricey but worth his sanity Vs. prednisone.
Nicholas Behavior was noted to be typical of a Duchenne boy and he did show anxiety, over-stimulation, and lots of sensory overload (lots of need for pressure IE: hugs, tip toe walk). Serial casting was talked about and we are in the process of getting that pre-authorized at Stanford LPCH.
We then met with Dr. John Day who so happen to take over the open position of MDA Neurologist at Stanford. I am very happy with Stanford's choice to bring him here, he is very supportive and educated in Duchenne. We are feeling very blessed to have him right here and only an hour away! He will now manage all of Nicholas care.
Christmas seemed to be right around the corner and we were excited that PPMD would have a F.A.C.E.S group for NorCal. This was a big step for CA! We have been so limited in care, support, and now we were getting a whole new package! So exciting!
Nicholas had an appointment with Dr. Nancy Yaun in Pulmonology(whom is another great MDA Dr.), we received a call asking to re-schedule his appointment so we could meet with Dr. Bu and Dr. Yaun. I had then asked what the results were for Nicholas' sleep study, they "forgot" to call me and THANK GOD I remembered to ask! His results showed Moderate Sleep Apnea and wanted to remove his tonsils and a few other test while he was under IV. Needless to say his surgery went well, he was not happy after. But is healing well and just had his follow up sleep study so we hope it's now clear of Apnea...
Unfortunatly right before Christmas both Nicholas and Bella got a very bad virus with vomiting. Everyone seemed to be doing better, then on christmas morning Nicholas had his very first Seizure! It was so very scarey! He woke up and asked to take a bath before we left to go see family. He vomited and while in the bath he seemed very spaced out, he acted as if he was going to pass out. He got out of the tub, walked into the living room, picked up a lego and his eyes rolled back! his hand went into a fist and then started shaking. after a minute he dropped to the floor and passed out! We jumped in the car to the ER at Stanford as I don't trust our local hospital with my dog. I called every doctor he had at stanford and as soon as we walked in they took us straight back into a room, passed all the people waiting in the ER waiting room and an ER Doctor was waiting for us. Nicholas was very dehydrated and took a whole bag of saline. He was starting to "wake up" from the seizure when we go into the room. He looked at the nurse and said" OH NO it's christmas at the hospital!" The nurses eyes got teary and told him that she was sorry but they had a present for him! She came back with Lightning McQueen and Matter cars. We finally got to go home after blood work and fluid. Nicholas slept for 2 days straight. The one thing that made me sad was that we spent Christmas alone, no one came by, no christmas Dinner and I was a wreck while my son slept off the affects of his seizure and virus.
Yesterday and today I have been on the phone, exchanging emails just to get Nicholas evaluated for Serial casting and the behavioral team to monitor his prozac. It seems to not be clear to anyone what the protocol for a Duchenne boy is, but it is clear what he needs. So far there are no protocols at the local service providers we go to, so we have had to go back up to Stanford and request referrals again. It's been a little stressful and overwhelming to explain to each person on the phone "why" he needs what he needs and "What" his diagnosis is. I find it so upsetting that these "professionals" don't know what Duchenne is and constantly repeat back to me "So he has MS?", it's a little frustrating...
To top the day, I found out a little girl that goes to Nicholas' school had passed away this past weekend. My instant reaction was to cry, even though I did not know the child my heart was broke. To think that your child could be gone in an instant is not a thought I want to think, but it's our reality. The fact that Nicholas has Duchenne already steals time from us. His life weighs on my mind everyday, every hour of every minute. I do realize Children with Duchenne are living to be young men, but they also don't have other genetic disorders that doctors have NO idea how they will affect one another like Nicholas. It weighs heavy on my heart. Some days I don't want to go to bed, it means one more day gone. Other days its a great memory made that I will never forget.
Friday, September 9, 2011
Disneyland 1/2 Marathon
On Sunday September 4th I participated in the Disneyland 1/2 marathon. This was an exciting time for me, as I was at a point in my life that I could not sit around like a bump on a log I had to something to help my son.
My Niece and I woke to the alarm at 3:30am, we needed to be down at the start line at 4:15 am. We ate our prime gel, a little energy bar and off we went from Disney's Grand California to Disneyland Drive at the Disneyland Hotel. We came to a fenced off area with tents blocking what I could see was a stage and hear LOUD music and at 4:15am you could only imagine how fast that wakes you up. As i walked thought the gate to my surprise was almost 16,000 people!!! My heart jumped, my blood started pumping, and I could feel excitement from head to toe. Teams were doing warm ups, dancing and trying to keep warm with foil blankets.
Next thing I remember they are having us move to our corrals, you could imagine moving 16,000 people to one street over took a long time. Reminded me of herding cattle across a river. Once we got in our corral, people were all talking about all there previous runs, races, doing Disney's coast to coast and Goofy challenge. Intimidation was all around me and I really wasn't sure i could finish the race. When the 30 minute count down began, mickey came on stage, Drew Carey was introduced as he was running with us and the national anthem was sang. THEN Fireworks went in the air, the race was starting!
about 20-30 minutes after the race started my corral was called up to the start line, and we were off. I was scared all until I herd the announcer say GO "RUN for our SONS". IT WAS ON!
We ran through crowds of people, bands, cheerleaders, hula dancers, and families holding up signs that said "RUN MOMMY, I know it sucks but its for ME", I cried when i saw those simple things. We ran through California Adventure and Disneyland, and saw all the characters rooting for us. Then when we were running in the Angels Stadium I saw that we were at our half way marker. The buses were waiting for people who couldn't finish the race, I was still running and not even winded, just taking in the scenery.
My I-phone shut down at 11 miles as I was listening to Darius Weems song "Don't stop Believing". I herd Screams, people breathing hard, I thought to myself "Clear the mechanism" from that baseball movie, I cant remember the name. I was thinking about my son, The Bath boys and how they are trying to get a van, about a new friend I met on Facebook who's adopted son is 8 weeks old and has Duchenne. I thought to myself, if I have to keep running to END Duchenne, I will not stop. So much was on my mind that it made the race go quick.
I saw "Harbor"st., I knew this was IT, This was the street where you can see the monorail, where the old parking lot was before California Adventure was built, THIS is where I always felt my heart race as a child because I knew we WERE HERE! This time I felt more emotion then I have ever felt, MY tears rolled down my face like Niagara Falls! The sign said 12 Miles and I ran harder, I was almost there. An imagineer yelled and said "Don't stop, Don't forget WHY you are running, your almost there"! I came around the bend and I saw streamers, THOUSANDS of people, cameras, news anchors, Balloons and WATER! I ran through the finish line to a crowd that had completely stopped! WHAT? We run 13.1 miles to STOP?! Then it was line after line, get your metal, get a picture, get a bagel, banana, water, massage, stretch...I made it out and looked up and saw my Son, daughter and Grandmother. I looked at my grandma with tears and said "I did it", then I saw my husband and I felt relieved, my family was there just like I had dreamed. I held my son and cried. This was a great end to something I worked months on.
I saw all my fellow team mates as they kissed and hugged there family, this was exactly how I imagined it would feel, GREAT! I ran the race in 2hrs 38 min and plan to get a better time next race.
I cant wait for next year, more awareness, more research money, closer to a CURE.
My Niece and I woke to the alarm at 3:30am, we needed to be down at the start line at 4:15 am. We ate our prime gel, a little energy bar and off we went from Disney's Grand California to Disneyland Drive at the Disneyland Hotel. We came to a fenced off area with tents blocking what I could see was a stage and hear LOUD music and at 4:15am you could only imagine how fast that wakes you up. As i walked thought the gate to my surprise was almost 16,000 people!!! My heart jumped, my blood started pumping, and I could feel excitement from head to toe. Teams were doing warm ups, dancing and trying to keep warm with foil blankets.
Next thing I remember they are having us move to our corrals, you could imagine moving 16,000 people to one street over took a long time. Reminded me of herding cattle across a river. Once we got in our corral, people were all talking about all there previous runs, races, doing Disney's coast to coast and Goofy challenge. Intimidation was all around me and I really wasn't sure i could finish the race. When the 30 minute count down began, mickey came on stage, Drew Carey was introduced as he was running with us and the national anthem was sang. THEN Fireworks went in the air, the race was starting!
about 20-30 minutes after the race started my corral was called up to the start line, and we were off. I was scared all until I herd the announcer say GO "RUN for our SONS". IT WAS ON!
We ran through crowds of people, bands, cheerleaders, hula dancers, and families holding up signs that said "RUN MOMMY, I know it sucks but its for ME", I cried when i saw those simple things. We ran through California Adventure and Disneyland, and saw all the characters rooting for us. Then when we were running in the Angels Stadium I saw that we were at our half way marker. The buses were waiting for people who couldn't finish the race, I was still running and not even winded, just taking in the scenery.
My I-phone shut down at 11 miles as I was listening to Darius Weems song "Don't stop Believing". I herd Screams, people breathing hard, I thought to myself "Clear the mechanism" from that baseball movie, I cant remember the name. I was thinking about my son, The Bath boys and how they are trying to get a van, about a new friend I met on Facebook who's adopted son is 8 weeks old and has Duchenne. I thought to myself, if I have to keep running to END Duchenne, I will not stop. So much was on my mind that it made the race go quick.
I saw "Harbor"st., I knew this was IT, This was the street where you can see the monorail, where the old parking lot was before California Adventure was built, THIS is where I always felt my heart race as a child because I knew we WERE HERE! This time I felt more emotion then I have ever felt, MY tears rolled down my face like Niagara Falls! The sign said 12 Miles and I ran harder, I was almost there. An imagineer yelled and said "Don't stop, Don't forget WHY you are running, your almost there"! I came around the bend and I saw streamers, THOUSANDS of people, cameras, news anchors, Balloons and WATER! I ran through the finish line to a crowd that had completely stopped! WHAT? We run 13.1 miles to STOP?! Then it was line after line, get your metal, get a picture, get a bagel, banana, water, massage, stretch...I made it out and looked up and saw my Son, daughter and Grandmother. I looked at my grandma with tears and said "I did it", then I saw my husband and I felt relieved, my family was there just like I had dreamed. I held my son and cried. This was a great end to something I worked months on.
I saw all my fellow team mates as they kissed and hugged there family, this was exactly how I imagined it would feel, GREAT! I ran the race in 2hrs 38 min and plan to get a better time next race.
I cant wait for next year, more awareness, more research money, closer to a CURE.
Tuesday, July 26, 2011
Training for my son
The past few months my friends and family has helped me raise over $3000.00 for the Disneyland Half marathon. This race will be my first ever marathon and I am very excited. Knowing that I am not only running in the happiest place on earth, but running for my son.
Earlier this year I joined "Run for our Sons" Team through Parent Project Muscular Dystrophy. I had no idea what I was to expect or how I was going to run 13.1 miles let alone raise $1200.00 to be able to run through MY favorite place in the world! Our fundraising started with simple emails sent to everyone in my contact list, daily postings on Facebook and before I knew it, I raised $1200.00 without any problems. Then I raised my personal goal to $3000. I knew that this would be a little more difficult, but no more difficult than it is for those many boys, men and few girls with Duchenne to be able to simply walk. So I hit the rest of my goal head on, with one thing in mind, FUNDING A CURE.
I decided to have a little Bake sale, WELL this little bake sale turned out to be a large bake sale and we sold sweatshirts, books, and every baked item you could think of. We met our goal of $3000. just by having a little bake sale. I found out that all you need to do is send a little information to your local paper and they will put your event in the local section. We had many Little league teams purchase dozens of cookies and cupcakes, it was a win win situation.
With all the fund raising set on the back burner I started to seriously train. Our whole family changed our eating habits, which is not to bad of an idea for anyone with Duchenne to avoid junk food. We started off with short walks, jogs, and I most recently ran 8.25 miles and felt GREAT. If my son had not had Duchenne I would have thought of every excuse on why I cant run, shouldn't run, or didn't have time to run.
I am still training, not as hard as I think I should be, but training none the less. I run with a double jogging stroller and every time I feel like giving up, I look down and see his little legs hanging over the seat with his body covered by the umbrella. What I see are two little legs with enlarged calves that I stretch everyday, Massage when he gets cramps and little legs that cant run like you or I. That's what keeps me going! I will keep running until I can see those little legs able to run and keep up with everyone else. The half marathon is about a month away and I know its going to be very emotional for me, I sometimes cry on runs. My reason for running is not selfish, its not to be healthier, to be thinner, not to have a sexy body or because its "My thing". My reason for running is my son, plain and simple and when people ask me how? why? I ask them "What would you do if your child was given a diagnosis with no cure"? Usually its no response.
So with all that is said and done, My next Stop is DISNEYLAND! Hope to see you there!
Earlier this year I joined "Run for our Sons" Team through Parent Project Muscular Dystrophy. I had no idea what I was to expect or how I was going to run 13.1 miles let alone raise $1200.00 to be able to run through MY favorite place in the world! Our fundraising started with simple emails sent to everyone in my contact list, daily postings on Facebook and before I knew it, I raised $1200.00 without any problems. Then I raised my personal goal to $3000. I knew that this would be a little more difficult, but no more difficult than it is for those many boys, men and few girls with Duchenne to be able to simply walk. So I hit the rest of my goal head on, with one thing in mind, FUNDING A CURE.
I decided to have a little Bake sale, WELL this little bake sale turned out to be a large bake sale and we sold sweatshirts, books, and every baked item you could think of. We met our goal of $3000. just by having a little bake sale. I found out that all you need to do is send a little information to your local paper and they will put your event in the local section. We had many Little league teams purchase dozens of cookies and cupcakes, it was a win win situation.
With all the fund raising set on the back burner I started to seriously train. Our whole family changed our eating habits, which is not to bad of an idea for anyone with Duchenne to avoid junk food. We started off with short walks, jogs, and I most recently ran 8.25 miles and felt GREAT. If my son had not had Duchenne I would have thought of every excuse on why I cant run, shouldn't run, or didn't have time to run.
I am still training, not as hard as I think I should be, but training none the less. I run with a double jogging stroller and every time I feel like giving up, I look down and see his little legs hanging over the seat with his body covered by the umbrella. What I see are two little legs with enlarged calves that I stretch everyday, Massage when he gets cramps and little legs that cant run like you or I. That's what keeps me going! I will keep running until I can see those little legs able to run and keep up with everyone else. The half marathon is about a month away and I know its going to be very emotional for me, I sometimes cry on runs. My reason for running is not selfish, its not to be healthier, to be thinner, not to have a sexy body or because its "My thing". My reason for running is my son, plain and simple and when people ask me how? why? I ask them "What would you do if your child was given a diagnosis with no cure"? Usually its no response.
So with all that is said and done, My next Stop is DISNEYLAND! Hope to see you there!
Monday, July 11, 2011
Butterfly Garden
Most recently Nicholas learned about Butterflies at school. He brings his school projects home to share with his sister, and teaches her all he can. Nicholas really loved learning about the caterpillars and how they turn into Butterflies. We decided to get a Butterfly house, I was worried about keeping bugs captive. But I ordered them online anyways, hoping they would survive. I felt very guilty about ordering a creature and it being sent via mail.
The Caterpillars arrived safe and sound via the post office, and we ripped the box open! Nicholas and Bella gathered around the little container and they both said "OH, WOW", from that moment I knew i made a good choice to allow bugs in my home. Everyday we check on them and see how fat they are getting, they are all now at the top of the cup hanging ready to turn into beautiful painted lady's.
I started looking online at how i was going to release these little guys and give them the opportunity to survive. So...We started a butterfly garden. We planted parsley, ecineacia, Butterfly bush, marigolds, chives and mellons. It came together very nice and I suprised myself with making a "kid/butterfly" garden. This has made me feel so proud that my kids helped me plant and water the plants daily. Not to mention they see that our plants have attracted tons of new butterflies! Nicholas is learning the names of them while Bella is picking the flowers with the catapillars on them.
When I was doing my "Butterfly homework" I came across a wonderfull meaning of the butterfly. It made me think of Duchenne, my kids, my family.
If a child whispers a wish to a butterfly it will take that wish to the great spirit and it WILL come true. Because wishes only come true if the one who is told only shares it with the great spirit, sice butterflies cant make noise, your secret is safe.
So we will all be making our wish when we set our Butterflies free in the Garden. Can you guess what my wish will be?
The Caterpillars arrived safe and sound via the post office, and we ripped the box open! Nicholas and Bella gathered around the little container and they both said "OH, WOW", from that moment I knew i made a good choice to allow bugs in my home. Everyday we check on them and see how fat they are getting, they are all now at the top of the cup hanging ready to turn into beautiful painted lady's.
I started looking online at how i was going to release these little guys and give them the opportunity to survive. So...We started a butterfly garden. We planted parsley, ecineacia, Butterfly bush, marigolds, chives and mellons. It came together very nice and I suprised myself with making a "kid/butterfly" garden. This has made me feel so proud that my kids helped me plant and water the plants daily. Not to mention they see that our plants have attracted tons of new butterflies! Nicholas is learning the names of them while Bella is picking the flowers with the catapillars on them.
When I was doing my "Butterfly homework" I came across a wonderfull meaning of the butterfly. It made me think of Duchenne, my kids, my family.
If a child whispers a wish to a butterfly it will take that wish to the great spirit and it WILL come true. Because wishes only come true if the one who is told only shares it with the great spirit, sice butterflies cant make noise, your secret is safe.
Sunday, June 26, 2011
Heavy Heart
Most recently Nicholas was playing with another child at a function. This child is very kind and open to other adults, yet as I listened closer I could hear the "Normal" society's opinion of Duchenne come out of this young child's mouth and it made my heart very heavy. I could tell it wasn't purposely directed at my son, but ignorance that is taught and passed down from his parents without even realising it.
The day started out very normal for us, chasing the kids around trying to get them ready for our day. Nicholas screaming that he wanted to do something other than getting dressed, and Bella continuously saying she has to sit on the toilet. We finally got to our destination 20 minutes late and feeling full of anxiety,s then being told that we were late didn't make me feel any better. But all was well and the kids settled in as always.
Nicholas of course started playing with cars and wanted to play with the other children. He typically will play side by side and not with other children, but this day was different. Nicholas was trying very hard to interact, which is a huge step for him. I did my best to step back and let him play, but I listened closely just in case I had to intervene due to screaming or throwing toys. The first hour went very well and everyone seemed happy.
I herd a door slam! The first thing I thought was my son got mad, angry, sad and slammed the door on his sister. Nicholas came running straight to me, crying saying "not nice, he pushed me out of the room, he doesn't like me"! So I decided to go around the corner and as I did I herd this "I don't like him, he is slow and he isn't cool, he is following me, tell him to go away", the parent just told the child to go play in the other room away from my son. So in my mind, the parent condoned the behavior of slamming the door in my sons face. Condoned that the child didn't like my child because he was slow and not "cool". I keep thinking to myself, maybe I'm being over-protective, over-looking the situation.
As the month has gone by I have realised that we avoid birthday parties, farmers markets (jump houses) all because the other kids cant understand why my son takes his time climbing onto things, slow to catch a ball, cant get up or run as quickly as them. I have seen him pushed to the ground, yelled at and now rejected. This is so hurtful especially coming from his peers. I believe it could all be avoided if parents took the time to talk with their children, teach their children, not just send them to play in another room or avoid playing with a child who has a disability. They learn how to socialize as adults from playing as a child.
My heart is heavy because my son did not understand why, he wants to be a normal child, he doesn't want to be slow or hard to understand. He just wants to be Nicholas...
The day started out very normal for us, chasing the kids around trying to get them ready for our day. Nicholas screaming that he wanted to do something other than getting dressed, and Bella continuously saying she has to sit on the toilet. We finally got to our destination 20 minutes late and feeling full of anxiety,s then being told that we were late didn't make me feel any better. But all was well and the kids settled in as always.
Nicholas of course started playing with cars and wanted to play with the other children. He typically will play side by side and not with other children, but this day was different. Nicholas was trying very hard to interact, which is a huge step for him. I did my best to step back and let him play, but I listened closely just in case I had to intervene due to screaming or throwing toys. The first hour went very well and everyone seemed happy.
I herd a door slam! The first thing I thought was my son got mad, angry, sad and slammed the door on his sister. Nicholas came running straight to me, crying saying "not nice, he pushed me out of the room, he doesn't like me"! So I decided to go around the corner and as I did I herd this "I don't like him, he is slow and he isn't cool, he is following me, tell him to go away", the parent just told the child to go play in the other room away from my son. So in my mind, the parent condoned the behavior of slamming the door in my sons face. Condoned that the child didn't like my child because he was slow and not "cool". I keep thinking to myself, maybe I'm being over-protective, over-looking the situation.
As the month has gone by I have realised that we avoid birthday parties, farmers markets (jump houses) all because the other kids cant understand why my son takes his time climbing onto things, slow to catch a ball, cant get up or run as quickly as them. I have seen him pushed to the ground, yelled at and now rejected. This is so hurtful especially coming from his peers. I believe it could all be avoided if parents took the time to talk with their children, teach their children, not just send them to play in another room or avoid playing with a child who has a disability. They learn how to socialize as adults from playing as a child.
My heart is heavy because my son did not understand why, he wants to be a normal child, he doesn't want to be slow or hard to understand. He just wants to be Nicholas...
Wednesday, February 9, 2011
Daily life
Today I was thinking about all the simple things that I take for granted.
When I talk I use my arms to express emotion.
When I have a question in a room, I raise my hand.
When I need to use the restroom, I don't think twice, I go.
When I'm Hungry, I go get food out of the kitchen.
When I drop something, I pick it up.
The list can go on and on. Most of us don't think twice about these actions. These are common everyday actions, that we do daily without help.
Then I think of all the boys with Duchenne. All of the above, is hard for them to do. Some of these items such as going to the restroom, they think 100 times over and over again on just how to ask the aide at school for help. When they drop an item, they have to WAIT for someone to get it. These are all common things that you and I do daily, yet most of us don't think twice or seem to care.
I have herd everything from boys with Duchenne not wanting to go back to school because its just not accessible enough and it takes too much energy for them to get around. To schools not understanding the needs, which goes back to my belief that if you don't live it you don't know it. Most boys with Duchenne cant go to private schools because they don't offer all the services that are in a public IEP, which I read this morning and made me so upset. These boys are being pushed from society simply because society doesn't understand the simple measures it should take. The common, healthy person is lazy, and only thinks for themselves. Not that I am saying all people are, but if we think hard on this, you realize that all public areas are made for the walking, non-wheelchair, self sufficient person. Why cant we just make ALL areas, computers, ATMS, schools, stores, ect.... accessible?! Society pleases only those who are "normal". Just my thought for today, take or leave it....
When I talk I use my arms to express emotion.
When I have a question in a room, I raise my hand.
When I need to use the restroom, I don't think twice, I go.
When I'm Hungry, I go get food out of the kitchen.
When I drop something, I pick it up.
The list can go on and on. Most of us don't think twice about these actions. These are common everyday actions, that we do daily without help.
Then I think of all the boys with Duchenne. All of the above, is hard for them to do. Some of these items such as going to the restroom, they think 100 times over and over again on just how to ask the aide at school for help. When they drop an item, they have to WAIT for someone to get it. These are all common things that you and I do daily, yet most of us don't think twice or seem to care.
I have herd everything from boys with Duchenne not wanting to go back to school because its just not accessible enough and it takes too much energy for them to get around. To schools not understanding the needs, which goes back to my belief that if you don't live it you don't know it. Most boys with Duchenne cant go to private schools because they don't offer all the services that are in a public IEP, which I read this morning and made me so upset. These boys are being pushed from society simply because society doesn't understand the simple measures it should take. The common, healthy person is lazy, and only thinks for themselves. Not that I am saying all people are, but if we think hard on this, you realize that all public areas are made for the walking, non-wheelchair, self sufficient person. Why cant we just make ALL areas, computers, ATMS, schools, stores, ect.... accessible?! Society pleases only those who are "normal". Just my thought for today, take or leave it....
Thursday, December 30, 2010
Year one
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.
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.
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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