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
Newborn
Run for Our Son's Donation
Thursday, October 21, 2010
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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