It's that time of year again! The MDA MuscleWalk! Our family will be walking and raising money to support the MDA. They have been a huge benefit to us since we were diagnosed a little over 2 years ago.
Please consider a donation today, in honor of Benjamin.
http://www.youtube.com/watch?v=BhF7rY16FD8&feature=youtu.be
Friday, January 27, 2012
Thursday, January 26, 2012
Updating
I just realized that I have not posted any updates for a while. Yeah, we've been BUSY.
Ben is close to getting his braces off of his bottom teeth. The orthodontist removed the ones from the top in early December. He should be brace-free in the next 3 weeks or so.
We have removed one of our van seats to accomodate keeping the medical stroller open and ready to use at all times. It has been so much easier than fighting to open and close it each time we use it. It has helped him out tremendously by allowing him to preserve his strength for the fun stuff.
There were some difficult times in December, after getting his Deflazacort from a different manufacturer. Normally, we order his medicine from the U.K. from a company that many Duchenne families use. Someone brought to my attention in November that a company in Canada was having a great deal on various prescriptions for new customers. The 'Black Friday' special meant that we could get a 3 month supply for the cost of shipping. I decided to try it. When it came in the mail, I discovered that I ordered it from Canada, it was made in India, and they shipped it from Barbados?! I knew others family had been long-time users of it so I thought it was fine.
About a week after giving him the new drug (well, same drug, different maker), we experienced what they call 'roid rage. Whew! Angry outbursts, crying, definance, throwing himself down, it was awful. It was so tempting to just take him off drugs altogether. After about 5 or 6 days, he began to level off and is back to himself. Thankfully.
The usage of steroids are controversial amongst Duchenne families. It's a shame that there are not more options out there. Steroids help preserve muscle strength but they also take the Calcium out of the bones. They help, but there are side effects. I make sure that he gets plenty of Calcium supplements and other vitamins to keep him healthy.
He has clinic again in a few weeks. He will be seeing the Cardiologist this time for another echo and EKG. He will also see the eye doctor and the dentist that week too. Busy, busy times.
I will try to be more faithful in updating in the future!
Ben is close to getting his braces off of his bottom teeth. The orthodontist removed the ones from the top in early December. He should be brace-free in the next 3 weeks or so.
We have removed one of our van seats to accomodate keeping the medical stroller open and ready to use at all times. It has been so much easier than fighting to open and close it each time we use it. It has helped him out tremendously by allowing him to preserve his strength for the fun stuff.
There were some difficult times in December, after getting his Deflazacort from a different manufacturer. Normally, we order his medicine from the U.K. from a company that many Duchenne families use. Someone brought to my attention in November that a company in Canada was having a great deal on various prescriptions for new customers. The 'Black Friday' special meant that we could get a 3 month supply for the cost of shipping. I decided to try it. When it came in the mail, I discovered that I ordered it from Canada, it was made in India, and they shipped it from Barbados?! I knew others family had been long-time users of it so I thought it was fine.
About a week after giving him the new drug (well, same drug, different maker), we experienced what they call 'roid rage. Whew! Angry outbursts, crying, definance, throwing himself down, it was awful. It was so tempting to just take him off drugs altogether. After about 5 or 6 days, he began to level off and is back to himself. Thankfully.
The usage of steroids are controversial amongst Duchenne families. It's a shame that there are not more options out there. Steroids help preserve muscle strength but they also take the Calcium out of the bones. They help, but there are side effects. I make sure that he gets plenty of Calcium supplements and other vitamins to keep him healthy.
He has clinic again in a few weeks. He will be seeing the Cardiologist this time for another echo and EKG. He will also see the eye doctor and the dentist that week too. Busy, busy times.
I will try to be more faithful in updating in the future!
Today's blessing
Back in October, at our regular clinic visit, I asked about Ben getting swim/aqua therapy. Our doctor wrote the prescription and we got put on the waiting list here at Nationwide Children's Hospital. A TWO YEAR waiting list. While I was excited, I knew that he needed to be in a pool now to get the benefits of the water.
I decided to join the local YMCA. I figured we could at lease do something while we waited. Our physical therapist gave me a few ideas to get started. Simple things like walking side to side in the water are a huge benefit.
Today was our second visit. I had 5 of the kids with me to explore the fun of swimming. See, none of my kids have had swimming lessons. Ever. They have been swimming a few times, but are not very comfortable in the water and I want to change that. I grew up in a pool!
When we arrived, we scanned our cards and then I hear someone call my name. I looked and she seemed vaguely familiar. I then I remembered! She was someone who was in my homeschool group a few years ago. We got to talking and catching up while the kids got changed into their swim clothes. I told her about Ben's diagnosis and one of the reasons we were at the Y. She informed me that she is a certified swimming instructor there and that she would be happy to give my kids private lessons every week! I am soooo excited! HUGE blessing :)
I decided to join the local YMCA. I figured we could at lease do something while we waited. Our physical therapist gave me a few ideas to get started. Simple things like walking side to side in the water are a huge benefit.
Today was our second visit. I had 5 of the kids with me to explore the fun of swimming. See, none of my kids have had swimming lessons. Ever. They have been swimming a few times, but are not very comfortable in the water and I want to change that. I grew up in a pool!
When we arrived, we scanned our cards and then I hear someone call my name. I looked and she seemed vaguely familiar. I then I remembered! She was someone who was in my homeschool group a few years ago. We got to talking and catching up while the kids got changed into their swim clothes. I told her about Ben's diagnosis and one of the reasons we were at the Y. She informed me that she is a certified swimming instructor there and that she would be happy to give my kids private lessons every week! I am soooo excited! HUGE blessing :)
Sunday, November 27, 2011
Two Years ago...
Two years ago today, we received the devastating news that our 5 year old son may have Duchenne Muscular Dystrophy. What a shock! You can read about it here. Two years have flown by at break-neck speed! At times, it seems like our son is simply getting better, but inside, we know that he is not. Duchenne is progressive and there is no positive outcome.
Over the last 2 years, I have met many new DMD friends via facebook. I am so thankful to know that there are others that truly share and understand our burdens. They go through many of the same feelings and emotions, have the same fears and doubts. I have met moms with newly diagnosed sons. I have encouraged moms on how to teach their sons how to take a pill. I have read of the struggles of spinal rod fusion surgeries, horrible school situations, picking out a new wheelchair, figuring out insurance and/or medicaid.
I have witnessed heated debates regarding the usage of steroids and the STS/Vecttor treatment. I have cried when another young man or boy has lost their battle with Duchenne. I have tried to offer words of encouragement to hurting families. I pray for those whom I consider my DMD family.
Not too long after our official diagnosis, I spoke with my great-grandmother on the phone. She knows and understands Duchenne due to the fact that in her younger years, she was a caretaker of a young Duchenne boy. She is a sweet Christian lady whom I admire. She told me something that has stuck with me over these last 2 years. Here is what she said, "You have probably asked God, why me? Well, why NOT you?" Not one of us are promised a life without trials or tribulations. As a born-again Christian, I firmly believe that the Lord allows trials in our lives to perfect us, or to mature us. He allows these in our lives perhaps for us to be able to minister to others who have similar needs. James 1:2-4 My brethren, count it all joy when ye fall into divers temptations;Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.
One day, all of us will die. As much as we want to avoid the topic, we all have an appointment with death. There is simply no way to escape it. It would be wise for one to think about it and consider what the Bible says about it. Hebrews 9:27 And as it is appointed unto men once to die, but after this the judgment: One day we will all stand before God to give an account of our life. Considering the fact that all of us are born sinners, this is bad news. Thankfully, God offered a way for us to escape this judgment. He sent His Son, Jesus Christ to die in our place as the ultimate Sacrifice for our sins. All we need to do is simply repent (turn away from our sin) and accept this gift that God has given us. If we accept this gift, God will not see us on judgment day, but He will see His Son because He is standing in our place. This is the gift of salvation.
I felt provoked to once again share my faith in the Lord. Time is too short. I have the assurance from the Bible that one day, I will be in heaven when I die. 1 John 5:13 These things have I written unto you that believe on the name of the Son of God; that ye may know that ye have eternal life, and that ye may believe on the name of the Son of God. When Ben has the understanding that he too is a sinner, he will have the opportunity to be born again. What a blessing to know that this life is not the end of it all, we will one day be in heaven and see our loved ones again, all the while worshiping our Lord.
The diagnosis of Duchenne has changed my perspective on life a little. I no longer ignorantly think that life is generally a bed of roses nor do I take time with my family for granted. Time is simply too short. I am even MORE thankful for my salvation. It gives me joy unspeakable and holds me up when I feel like falling into the despair of a devastating, horrid disease.
Thank you Lord.
Over the last 2 years, I have met many new DMD friends via facebook. I am so thankful to know that there are others that truly share and understand our burdens. They go through many of the same feelings and emotions, have the same fears and doubts. I have met moms with newly diagnosed sons. I have encouraged moms on how to teach their sons how to take a pill. I have read of the struggles of spinal rod fusion surgeries, horrible school situations, picking out a new wheelchair, figuring out insurance and/or medicaid.
I have witnessed heated debates regarding the usage of steroids and the STS/Vecttor treatment. I have cried when another young man or boy has lost their battle with Duchenne. I have tried to offer words of encouragement to hurting families. I pray for those whom I consider my DMD family.
Not too long after our official diagnosis, I spoke with my great-grandmother on the phone. She knows and understands Duchenne due to the fact that in her younger years, she was a caretaker of a young Duchenne boy. She is a sweet Christian lady whom I admire. She told me something that has stuck with me over these last 2 years. Here is what she said, "You have probably asked God, why me? Well, why NOT you?" Not one of us are promised a life without trials or tribulations. As a born-again Christian, I firmly believe that the Lord allows trials in our lives to perfect us, or to mature us. He allows these in our lives perhaps for us to be able to minister to others who have similar needs. James 1:2-4 My brethren, count it all joy when ye fall into divers temptations;Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.
One day, all of us will die. As much as we want to avoid the topic, we all have an appointment with death. There is simply no way to escape it. It would be wise for one to think about it and consider what the Bible says about it. Hebrews 9:27 And as it is appointed unto men once to die, but after this the judgment: One day we will all stand before God to give an account of our life. Considering the fact that all of us are born sinners, this is bad news. Thankfully, God offered a way for us to escape this judgment. He sent His Son, Jesus Christ to die in our place as the ultimate Sacrifice for our sins. All we need to do is simply repent (turn away from our sin) and accept this gift that God has given us. If we accept this gift, God will not see us on judgment day, but He will see His Son because He is standing in our place. This is the gift of salvation.
I felt provoked to once again share my faith in the Lord. Time is too short. I have the assurance from the Bible that one day, I will be in heaven when I die. 1 John 5:13 These things have I written unto you that believe on the name of the Son of God; that ye may know that ye have eternal life, and that ye may believe on the name of the Son of God. When Ben has the understanding that he too is a sinner, he will have the opportunity to be born again. What a blessing to know that this life is not the end of it all, we will one day be in heaven and see our loved ones again, all the while worshiping our Lord.
The diagnosis of Duchenne has changed my perspective on life a little. I no longer ignorantly think that life is generally a bed of roses nor do I take time with my family for granted. Time is simply too short. I am even MORE thankful for my salvation. It gives me joy unspeakable and holds me up when I feel like falling into the despair of a devastating, horrid disease.
Thank you Lord.
Tuesday, October 11, 2011
Duchenne website
Here is a website that I recently discovered that has a lot of information regarding Duchenne.
Check it out! http://duchenneinfo.com/
Check it out! http://duchenneinfo.com/
Friday, October 7, 2011
Protandim
There is a supplement that I have heard about off and on since we started our DMD journey. It is called Protandim. From what I understand (which isn't much), Protandim is a supplement that you can take alongside the other vitamins and supplements we already take. It is supposed to reduce oxidative stress or neutralize the free-radicals that our bodies produce every day.
From www.Protandim.com:
Protandim provides you with thousands of times more antioxidant power than any food or conventional supplement.* In fact, you would need to consume the antioxidants found in 375 oranges or 87 glasses of red wine or about 120 vitamin C tablets (500mg) a day to neutralize the amount of free radicals your body produces every single day.
Antioxidants are something we should be consuming anyway, they are found in berries, beans and some other foods that are good for us. We cannot consume enough of these foods to get the same benefits as Protandim.
I have heard several testimonies regarding Protandim and Duchenne Muscular Dystrophy. If it can't hurt, and will possibly help, I am DEFINITELY going to give it a try. I ordered a one month supply and will be journaling what I observe in Ben's abilities.
His current abilities:
- He can walk, but gets tired;
- he can run, more of a waddle run
- gets sleepy in the early evenings and will sometimes take a nap
- scoots down the steps of our home
- walks up our steps on all four's
- walks up the 2 steps outside into our house holding his thigh
I am eager to get Dr. Flanigan's thoughts on this.
And just for fun...(and because he is so cute)
Thursday, October 6, 2011
CaringBridge
We have a CaringBridge page now. Will try to post updates more regularly both here and there too. We have clinic next week and will have an update for sure then. Right now things are the same, only noticing very small changes like scooting down the steps and his hands are beginning to 'claw'. At Occupational Therapy last week, Miss Francis suggested stretching his hands to prevent problems with this. She also said that maybe we could do more of his schoolwork on the computer instead of his workbooks. All in all, he is doing well :)
You can check out his CaringBridge page here.
You can check out his CaringBridge page here.
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