It's been almost 6 months since we found out our 3 year-old son Grant has Duchenne Muscular Dystrophy (DMD). It is hard to believe it has been that long...it feels as if it has only been a few weeks. With time working against us these days...I wish it would just slow down!!
What have I learned in these 6 months?
Well, first and foremost...life goes on. There is still dirty laundry, dishes to clean, carpool lines to wait in, and kids who fight with one another. But, more importantly I have learned people are incredibly kind. We have had neighbors bring us dinner, many pray for us, invite us to church, and send thoughtful cards. We thank everyone and continue to ask all of you to pray for little Grant and for the researchers to find a cure for Duchenne.
Since Grant's diagnosis much has happened. He has been to Texas Children's Hospital twice, where the recommendations are to wear night splints (big uncomfortable boots that keep his feet flexed while he is sleeping), daily steroids, and a muscle biopsy. The last two are somewhat controversial...so we are in the process of making an appointment with a neurologist in Cincinnati (she is supposed to be The Best.) Not that Texas Children's is bad. They just focus on many other neuromuscular diseases and we want someone who is more specialized in Duchenne.
We went to a conference in Atlanta to find out more about Duchenne and research. There we were able to meet other families from the Houston area who also have boys with Duchenne. It has been nice to connect with them, as I am sure they will be a tremendous support in the future. After meeting with them, and doing more research we decided to put Grant on several supplements, including Omega oils, CoQ10, and Creatine.
In these 6 months, I also had my genetics testing completed and found out I am NOT a carrier...so it is even more puzzling as to WHY and HOW this would happen to Grant. Believe me everything has crossed my mind...including babies switched at birth...except Grant looks exactly like his father :)
Since the diagnosis, we have also realized we have no choice, but to move from our beautiful home and neighborhood. We love it here, but we have stairs in our 2-story home and they are not good for Grant. Going up and down stairs requires 15 times more muscle energy than regular walking, which means 15 times faster muscle degeneration. So, I spend half of my day stressed, trying to keep him downstairs, which works okay until his brother gets home from school. Then it's up and down, down and up, up and down, with Grant trying his best to follow. I don't want to restrict my older son...so I rush to the stairs to carry Grant EVERY time (and did I mention he weighs 40 lbs.) Although, once the move is complete, we will be relieved, we are VERY worried about selling a new home in a down market and I really hate moving, the showings, the packing, the cleaning UGH!
We have also learned how to plan our outings so that Grant doesn't have to walk too far. We carry him quite a bit and use a stroller to help him get around faster and keep his muscles from tiring.
I can't leave this blog without also telling about all the great things that have happened during this time. I finished my graduate program after 4 long years of school and internships. I am now a Nationally Certified School Psychologist (NCSP) and have a Master's degree in School Psychology. I still have one more test to be licensed specifically for the state of Texas and will take that test soon. Our older son Dresden (6 years), finished up a great swim season with the Northampton Barracudas. They were the division Champs this year, Go Cudas!!. He started First Grade and so far has all A's and E's in conduct. He was also named 'Outstanding Bus Rider' for the month and joined a new baseball team, the Mets. He is such a sweet and happy boy. I hope that never changes.
The last exciting news is the foundation, Save Our Boy (http://www.saveourboy.org/) which will work to raise funds for researchers working on Duchenne. We have all the preliminary paperwork filed and the website up and running. We have already received numerous donations from many generous people to help us get off to a good start. We thank everyone for the help they have given us.
So, in the end, we have learned quite a bit in these 6 months...but there is still much to learn ahead...
Friday, October 2, 2009
Friday, July 31, 2009
Starting a Blog
Hi...My name is Heather...I am Grant's Mommy
I never thought I would start a blog (I am just not the type). I have always enjoyed my privacy. I have had quite a normal life, mostly followed the rules (except for a few wild times in school), finished college (Go Longhorns!), have great friends and family, married the man of my dreams (well..no one said my dream was perfect...just kidding), and moved to the Houston suburbs. Before I got pregnant, I had genetic testing. I was cleared of being a carrier of Cystic Fibrosis, Tay Sach's Disease etc. Doctors said I was perfectly healthy.
I went on to have my first son in 2003. He is a happy, healthy, and well-adjusted 6-year old now. We had our second son in 2006. Doctors all reported he was healthy at birth and at every 6-month check-up. When he was about 2 years old, we began to be concerned with his speech and started speech therapy. Doctor's still didn't seem concerned. Then, right before his 3rd birthday, a lady evaluating him for speech noticed his well-defined calf-muscles (we had always just thought he had nice calf muscles). I immediately went on Google and found out about Duchenne Muscular Dystrophy, a disease I didn't even know existed, but one that was about to break my heart into a million tiny pieces. After bringing my son back to the doctors and demanding testing, he was diagnosed with Duchenne.Duchenne Muscular Dystrophy is a the most common fatal genetic disease diagnosed in childhood. It is an x-linked disorder affecting boys, which causes a deterioration of all the skeletal muscles in the body and the heart muscle. Boys affected with the disease are usually in a wheelchair by about age 10 and die in their late teens or early 20's.
How could this be happening? My husband and I said over and over. We did all the right things. I have no family history of muscular dystrophy, but found out later, I may be a carrier and not even know it. Even if I am not a carrier, I could still have a child with muscular dystrophy. One-third of the cases are from mothers who are not carriers. Even though our hearts are still breaking, my husband and I are now on a mission to increase awareness and research for this disease.
Not only do we want to stop this from happening to other families...We are in a race against time to save our son's life. There are currently researchers and scientists working diligently to come up with good treatments and a cure for this disease, but there is limited funding and awareness. We need the help of everyone...to save these boys so they can continue to enjoy things that we all take for granted everyday...walking, standing, breathing.
I never thought I would start a blog (I am just not the type). I have always enjoyed my privacy. I have had quite a normal life, mostly followed the rules (except for a few wild times in school), finished college (Go Longhorns!), have great friends and family, married the man of my dreams (well..no one said my dream was perfect...just kidding), and moved to the Houston suburbs. Before I got pregnant, I had genetic testing. I was cleared of being a carrier of Cystic Fibrosis, Tay Sach's Disease etc. Doctors said I was perfectly healthy.
I went on to have my first son in 2003. He is a happy, healthy, and well-adjusted 6-year old now. We had our second son in 2006. Doctors all reported he was healthy at birth and at every 6-month check-up. When he was about 2 years old, we began to be concerned with his speech and started speech therapy. Doctor's still didn't seem concerned. Then, right before his 3rd birthday, a lady evaluating him for speech noticed his well-defined calf-muscles (we had always just thought he had nice calf muscles). I immediately went on Google and found out about Duchenne Muscular Dystrophy, a disease I didn't even know existed, but one that was about to break my heart into a million tiny pieces. After bringing my son back to the doctors and demanding testing, he was diagnosed with Duchenne.Duchenne Muscular Dystrophy is a the most common fatal genetic disease diagnosed in childhood. It is an x-linked disorder affecting boys, which causes a deterioration of all the skeletal muscles in the body and the heart muscle. Boys affected with the disease are usually in a wheelchair by about age 10 and die in their late teens or early 20's.
How could this be happening? My husband and I said over and over. We did all the right things. I have no family history of muscular dystrophy, but found out later, I may be a carrier and not even know it. Even if I am not a carrier, I could still have a child with muscular dystrophy. One-third of the cases are from mothers who are not carriers. Even though our hearts are still breaking, my husband and I are now on a mission to increase awareness and research for this disease.
Not only do we want to stop this from happening to other families...We are in a race against time to save our son's life. There are currently researchers and scientists working diligently to come up with good treatments and a cure for this disease, but there is limited funding and awareness. We need the help of everyone...to save these boys so they can continue to enjoy things that we all take for granted everyday...walking, standing, breathing.
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