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!
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