"8" is the Magic Age

My baby boy turned 8 last week! Bittersweet.

When we were diagnosed, we were told that 8 is the year that DMD boys begin to decline. Their muscles are not growing anymore, giving the appearance that the DMD might not be as bad as we were told. The ages of 6-7 are considered the honeymoon years, muscles are still growing and it really looks like they may be getting better. I have secretly thought that Ben may have Becker's MD, and not Duchenne. I know that it is wishful thinking. For those who don't know, Becker's Muscular Dystrophy is on the same gene, but is not as severe. Those with Becker MD live well into their mid to late adulthood.

There is some good news though. When we were diagnosed a little over 2 years ago, we were told that survival rate is in the late teens. As of today, that has increased to mid-to late 20's. Progress is being made, and I am thankful but I want more. I want a cure. I pray that it is found in time. So many boys have died waiting for better treatments and a cure to be found and my heart goes out to their families. It is heartbreaking every time I hear of another boy/young man who has lost the battle.

But I am living for today, enjoying our time and keeping those thoughts on the back burner and not the forefront of my mind. I don't want to have any regrets of worry or fear. I am still trusting God. I know that nothing will happen that He doesn't already know about and have complete faith that no matter what happens, God is in control.

Psalm 147: 3 He healeth the broken in heart, and bindeth up their wounds.

Psalm 147:5 Great is our Lord, and of great power: his understanding is infinite.

MDA MuscleWalk 2012

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

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!

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 :)

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.

Duchenne website

Here is a website that I recently discovered that has a lot of information regarding Duchenne.

Check it out! http://duchenneinfo.com/

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:

1. He can walk, but gets tired;
   
2. he can run, more of a waddle run
3. gets sleepy in the early evenings and will sometimes take a nap
4. scoots down the steps of our home
5. walks up our steps on all four's
6. walks up the 2 steps outside into our house holding his thigh

Just a few observations. Our shipment should be here next Tuesday, so his first dose will be Wednesday (clinic day!)
I am eager to get Dr. Flanigan's thoughts on this.

And just for fun...(and because he is so cute)

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.

I Know Who Holds Tomorrow

Last week, we went to a friends house for a family game of baseball. We didn't really go by the rules. We let everyone bat until they hit a ball, didn't call fouls-if they hit it, they ran, went through the batting line up once and switched sides. With the mix of ages between our 6 children and their 4, it was the best way to go for a fun, friendly game.

Whenever it was Ben's turn to bat, whoever was pitching made sure to get close so he could hit the ball. As he ran the bases, you could just see the sheer determination in his face as he pushed his legs to go faster and faster. Part of me wanted to tell him to slow down some or take a little break. The other part of me said, just let him enjoy himself, he is having so much fun. I decided to just let it go.

I have noticed in the days following, that he has been a little more tired and having pains in his feet. He fell at the grocery store yesterday. I always question myself, wondering if I made the right choice; even the little ones. Should I have stopped him?

Imagine how he and other DMD boys feel. His mind is so concentrated on making his body do something that it struggles so hard to do. Imagine feeling like you can go faster, stronger, higher, only to have your legs produce a fast walk instead of the sprint your mind is determined to make. Imagine running with 50lb weights inside your shoes. Imagine a gallon of milk being too heavy to carry.

Living for the moment is my motto. I didn't used to be like this and I sometimes feel pulled into different directions. As a Christian, I believe that nothing happens by accident. I want to live in the moment, yet I want to see the bigger picture of it all. I know that our lives are only just a vapour. If you think about it, in light of eternity, we are only on this earth for a speck of time. Eternity is what truly counts. James 4:14 Whereas ye know not what shall be on the morrow. For what is your life? It is even a vapour, that appeareth for a little time, and then vanisheth away.

I want my son to enjoy life. I also don't want anything holding him back from what the Lord has for him. I want our time, mine and my whole family, count for something. Only the Lord knows all the intricate details for our future. I am continuing to place my trust in Him and have faith that He holds tomorrow in His hands.

New book!

What is Duchenne? Why haven't I heard of it before? This is a new book collaborative to educate the world about Duchenne Muscular Dystrophy. 33 parents have come together to share their stories....I am one of them.

Positive news :)

We had clinic last Wednesday at Nationwide Children's Hospital here in Columbus. We were supposed to see the cardiologist but he was having his own surgery so we saw a nurse practitioner instead. Because of his regular cardiologist not being there, we had a long wait and actually wound up being several hours late for his clinic appointment.

Ben had an EKG and an echocardiogram. DMD boys typically have these tests done yearly unless complications begin. Both of these tests showed that his heart looks exactly the same as last year, praise the Lord! We were told that his ejection fraction is 65%. I had no idea what this meant so I asked what normal is. She told me that anything above 50-55% IS GOOD. His is 65%. Good news :)

His cardio appointment was at 9:30 and clinic was at 10:30. Because of our wait, we didn't make it upstairs for clinic until 12:15. We saw Dr. Flanigan, his neurologist, that we see for every clinic appointment. After the muscle strength tests, he stated that Ben appears to actually be a little stronger than last time. This is NOT the norm. He did state that at the ages of 6-7 (the honeymoon years), the muscles are continuing to grow (and then weaken). He attributed his strength to this period of growth. He stated again that he felt that Ben was on the 'higher end of the spectrum' concerning the Duchenne.

After we saw Dr. Flanigan, a physical therapist came and got Ben to do a few tests with him. He is in a clinical study where they measure his strength, they see how long it takes him to get off the floor, and a timed running test. I was not allowed to go with his to this portion of the visit. He is actually in several clinical studies. I feel that it is a benefit for him and others like him, now and future, to further study the complications of this disease.

A few weeks ago, the seating clinic called me to schedule an appointment. Seating clinic is where you take your child and have them fitted for a wheelchair. I wasn't real surprised, as Ben's physical therapist told me that they would be calling. She had actually made the recommendation. When I shared this with Dr. Flanigan, he said nope, he doesn't need that yet, it is way too soon! Of course, I knew that it was too soon for a wheelchair-he still walks fine. He does get tired on longer outings though. Anyway, I have decided to cancel this appointment for the time being.

All in all, it was a very positive visit. We will go back in 6 months. God is good :)

Passing the time while waiting for cardiology.

Make a Muscle-Make a Difference

Our family will be participating in the MDA Muscle Walk on March 26, 2011. We have also become MDA volunteers for the Shamrocks for Dystrophy program. We feel that since we have benefited from the MDA, it is a little something that we can do to give back.

• Muscle Walk- We are raising money and awareness for MDA. The actual walk will be March 26. Me, my husband, our 6 children, and our parents will be participating together. You can see our muscle walk page here.
• Shamrocks for Dystrophy- Have you noticed any stores or restaurants with the little green shamrocks hanging up? This is another fundraiser that helps raise money for clinic visits, the summer camp, and research. The way our family volunteers is that we go to specific stores that participate and simply thank them. We were given fun incentives that we can pass out to the cashiers and other workers. It is nice for these companies to put a face to what they are doing.

I like feeling like we are doing something to help or contribute in some way. There are so many wonderful organizations out there that benefit Muscular Dystrophy in some way, and we are thankful for all of them.

New Clinical Trial

A representative of Kennedy Krieger Institute has recently informed me of a new clinical trial for boys with Duchenne Muscular Dystrophy. They are checking to see if the drug Revatio (same drug that is in Viagra) would be beneficial as a cardiac drug for DMD patients. They are still recruiting for this trial. They plan to have 30 boys, ages 15 or older, who have been diagnosed with DMD. For more information, or to see if your son qualifies, click here.

I have recently read about the potential benefit of this drug in boys with DMD in a Quest article. I am so thankful for so many researchers trying to help these boys!


About the Kennedy Krieger Institute
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore, MD serves more than 16,000 individuals each year through inpatient and outpatient clinics, home and community services and school‐based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit www.kennedykrieger.org.

Reflecting and Other Stuff

I don't know why, but I have been reflecting on Duchenne more lately. Maybe it is because we are coming up on the first anniversary of our diagnosis. Perhaps it is just a time of year where life slows down a little and there is more time to think. Thinking about it too much is rather depressing. Pondering the future and what it may hold for our son and our family is a frightening thing for me.

I have also been reading about other DMD boys and young men on my facebook page. It is just so sad for these boys to have to go through this. Sometimes, if I read too much, it puts me in a melancholy kind of mood.

Benjamin has not started the increased steroids yet. I wonder if this may be why he is walking a little different. Things have settled down into more of a routine this week, so I don't believe that it is due to fatigue. Not that I think about it, he has been sleeping in quite a bit. He stays up late (midnight) and gets up about 9:30am.

I forgot to mention that in mid-October, he showed me a large, black bump on his gums, right above one of his baby teeth. I thought it looked like an asbcess and called the dentist. They got us in later that afternoon. Sure enough, it was an abscess. On the drive to the dentist, it had popped (ewww!). They took an x-ray and thought they saw something odd, so they took another. Sure enough, the strange thing they were seeing on the x-ray was part missing root to his baby tooth. They called it "internal resorption". Apparently, the root reabsorbed into his gum and caused the infection. The scary thing is: Ben said it didn't hurt!! It looked horrible!

The dentist decided to pull the tooth, but then was unable to get the remaining part of the root. She tried and tried and then Ben lost it. He was crying so loud. Even though he was numb, he could still feel the pressure of them digging in the gum for it. She finally stopped and said that now that the tooth was out, the infection could drain naturally and the root would eventually work its way down. We go back to check on it next week.

I wonder if the steroids (which cause bone loss) may have caused it. They said no, but I am not sure. He now has another baby tooth that is loose and has the grown-up tooth growing in behind it. I am going to wait until our appointment and have them pull it while we are there.

I am so thankful that I know the Lord Jesus Christ. I truly find my comfort in Him. I know that He holds our future in His hands and I am so grateful for His grace.

November already?!

I cannot believe it has been almost a whole year since we have found out about Ben having DMD! Actually, November 28th to be exact. In some ways it still seems so new and that we still have so much to learn. I have gone in spurts in my research over this last year. Right now, I am in the middle of taking a "research break". We've been too busy with other things recently.

This last week, our church had revival. Being the pastor's family, this was a time consuming week! But, oh so wonderful!! We had a great time! I did notice that Ben fell more this week and I wonder if it is because he was tired. We stayed up late, and were busy almost all day, every day. He fell a few times each day :o(

At our last clinic appointment, Dr. Flanigan said that he wanted to increase his steroids from 15 mg per day to 18 mg. He also said to use up what we have and then start it. We still have about 3 weeks' worth left. This increase should alleviate him falling so much again.

Other than the falling this last week, he is pretty much the same. I did notice that he scooted down the stairs a few times instead of walking down them. He has not been real consistent in wearing his night splints. They just don't seem to fit right. Dr. Flanigan said if it continues to be a problem, he will need to be fitted with a different kind, and the new ones would not be adjustable.

That's it for now.

Update

It is hard to believe that it has been one month since I last posted! We have been B.U.S.Y.!

We were supposed to have clinic at the end of September but we were rescheduled. We will be going this week on the 6th. Again, I am excited and nervous at the same time. Excited because our last clinic went so well and nervous, well, just the whole nature of this disease. I still have many questions.

My most recent question is this: Can a boy (or in the rare cases of girls) be diagnosed with Duchenne, and have it progress more along the Becker's line? Becker's Muscular Dystrophy is less severe than Duchenne. From the research that I have done, it is on the same gene but to know for sure if it is one or the other, we would have to have a muscle biopsy. I don't know that I want to put Ben through this unless there was reason to. At our appointment in June, Dr. Flanigan seemed very pleased with Ben and how well he is doing. To quote him, "Ben is doing better than most 6 year olds with this disease". He also said to another doctor in the room something about Becker's. I know it may be wishful thinking, but I don't care. I am going to ask this week if there is a possibility.

Last week, I received a copy of the report that was sent to the pediatrician from our June clinic. It seemed positive overall. I wasn't sure what some of the numbers meant so I asked my DMD moms facebook page. They also said it was a positive report and that it appeared that he is doing good. Very exciting news to me :o)

He is doing so much more since he has been taking the Deflazacort! He has now been on it for 9 months. We do see mood swings, but they are not unbearable. He has not gained much weight. We are making sure that he takes his calcium and Vitamin D (among other supplements) every day. We want to keep him as healthy as we can!

Our family will be getting the flu shot for the very first time ever this year. I got mine this morning (because I was already at the doctor and it was offered) and Ben will get his this week too. The rest of the family will be in the next week or two. It was highly recommended to us that the whole family get this shot. The kids are not excited about it ;o)

That's it for now. I will likely update again after Wednesday's clinic.

My Comfy Spot

I have been sitting in a comfy spot recently. This comfy spot consists of pretending nothing is wrong with my son. It is so easy to do. It's comfortable. Knowing that he has a fatal disease is always in the back of my mind somewhere but I am not dwelling on it right now. Right now, we are living it up and enjoying life! Plus, the simple fact that I have 6 children keeps me busy enough to not have to think about it all the time.

Today, I made appointments for all my kids' yearly check-ups. I usually try to schedule them 2 at a time so I only have to go 3 times instead of 6; it's just easier that way! This time however, I requested that Ben be seen by himself. I have a lot of questions for our pediatrician that I need to have answered. One of them being, why haven't we heard from him in the 7 months since our diagnosis. I mean, if I was a doctor and had a family that I have been seeing for 15+ years, I think I would call or something after learning one of them has been diagnosed with a life-threatening disease. But I guess that's just me. I am no doctor, just a mom. I was grateful that Ben is also 1st out of my 6 to be seen. This way, I can get it all out in the open before all the other children are seen.

Ben will also go back to the place where we have ordered his night splints in a few weeks. They have been ordered and we will go in for another fitting. We will then begin wearing them each night, all night, to keep his heel cords stretched. This will prevent the need for surgery and will also keep him walking longer.

I made the mistake this morning of reading a thread on facebook from another DMD mom. I have been in my comfy spot for about 2 months, all the while still researching and reading everything I can on DMD. This morning, however, I read someones' status about remembering the life of a loved one, and not their death. Then I read the comments. Bad idea :o( These folks have all lost sons to DMD, and some of them were young. I felt myself slipping away from the comfy spot.

But, I like it there too much and I think I'll just stay for a while.

Got my book!

I got my book today! I am very excited to read it (maybe a little nervous too). This book was written by a fellow DMD mom, Misty VanderWeele, whose son Luke is 18. You can get a closer look at the book on my sidebar. Thanks Misty, for shedding some light into your life as a DMD mom. :o)

AWESOME Time at Clinic!

Ben getting bored waiting. I think he was rolling his eyes at me!

We had great day at clinic today! We met our new neurologist, Dr. Flanigan, and we just love him! We learned new things and had an encouraging appointment.

Our clinic involved seeing the genetic counselor. I let him know that I had received my results of my own DNA test and that it indicated that I am not a carrier. He was pleased to hear this-it significantly lowers the chance of my daughters being carriers.

Next, the neurologist, study coordinator, PT, and several others (I don't know who they were) came in. Ben got a little nervous when the room suddenly got crowded, but Dr. Flanigan totally made him feel at ease. He listened to his heart and lungs and then checked his back (I think for signs of scoliosis-a common problem in DMD kids). Then he let Ben listen to his own heart :o) He enjoyed that part!

His favorite part was getting to run down the hall to check his ability and speed. He ran pretty fast! The doctor then asked me if he had a muscle biopsy. He has not had one of those since he had the DNA test to confirm Duchenne. The doctor was pleased with his running.

There are several ways that they test muscle strength. One is the running. Another is having them lay flat on their back and then lifting up their head to touch their chin to the chest. He did this very well! Dr. Flanigan told me that he is doing better than most 6 year old DMD kids! That was music to my ears!

I had all my questions answered too. I took in my list and went through them one by one. He also explained, along with the PT, how to do his stretches better. We will be getting night splints soon too. Then he said something that was VERY exciting! He made the comment that we need to keep Ben walking because there will be an exon skipping trial in the near future-that will help Ben! Very exciting indeed!

The Lord is so faithful :o)

Clinic Time!

We have another clinic appointment coming up on Wednesday. I'm excited about it (sort of) because I have a better grasp of what we are dealing with and know how to direct my questions. We will be seeing a new doctor, as our neurologist has moved away. I am eager to see who it will be. From the ones that I have met so far, I would be happy with any of them. They are doing tremendous work at Nationwide Children's Hospital in the area of Duchenne Muscular Dystrophy!

Our current medicines & supplements include:

• Deflazacort (steroids)
• flax seed oil (in the capsules)
• multi-vitamin with extra vitamin C
• Calcium chews (600 mg)
• Vitamin D-helps the Calcium absorb better
• Vitamin E
• Selenium-helps the Vit E
• Vitamin C-just added this one last week

I still have much to learn! Ben is doing pretty good right now. We are living normally, just making adjustments as we go. We recently got a wagon for him for when we are places that require a lot of walking. I am also going to be applying for a disability placard for our van after his clinic appointment this week. Since children who have DMD get tired so easily, why waste all their energy in the parking lot and not the intended place??

We took a trip to COSI this past week. It is a hand's on-science museum. They had Big Machine's week and the boys had a blast! Living it up :o)