Long time, no see!

I just realized that it has been over a month since I have posted anything here!! I have been keeping busy researching, sharing information, and networking with other mothers who have a child with Duchenne Muscular Dystrophy. That, along with all of these new doctor's appointments, life has been keep this family busy!

We have recently discovered the wonderful world of lapbooking! We are truly having so much fun with it. So far we have completed (almost) 3.

• Autumn Treasures
• Teeth
• Winter Olympics (will finish this week on this one)

A great source is www.homeschoolshare.com. There are a LOT of free lapbooks and how-to's. It has taken some of the burden of some of the other subjects that we honestly just haven't gotten to recently. Basically we do math and then work on our current lapbook. The lapbooks naturally lead into discussions about various topics, which is enjoyable.

If you haven't already checked it out, my new blog is called Boy Blessings. I spend most of my blog time there and on my new facebook page called Duchenne Muscular Dystrophy MOMS. Feel free to stop on over!

A video to watch

New Blog

I have started a new blog that will be more specific to my son, Benjamin and Muscular Dystrophy in general. Feel free to come on by! I will post future updates on his condition there. Thank you again to all who are praying, we truly feel it.

www.babyloveblessings.blogspot.com

17,771

We received the results of one of Ben's blood tests a few days ago. Basically it was checking for something called "Creatine Kinase", a CK test. When the muscles break down, CK releases into the bloodstream, so when it is elevated, they know that there is some kind of problem with the muscles. The nurse was not sure what the "normal" range was, but from my findings, it seems to be somewhere in the range of 22 to 198 (some even say up to 400U/L). Ben's is 17,771.

The nurse said that since it is elevated, it indicated that yes, he has a mucsle disorder, but the doctor is not saying what yet until that 2nd test comes back (around the 22nd). The 2nd blood test is looking for the specific gene and mutation, which will tell us exactly what he has.

I am surprisingly okay right now. I know that it is in the Lord's hands-as it was before we even knew anything. I also know that many prayers are going up for him and my family. It's funny, people ask me, "how is Ben doing?" Well, he is doing exactly the same as he was before November 28th. He doesn't feel any different and he doesn't really understand what is going on. He just knows he has been to the doctor's a few more times than normal.

He did have a problem the other day, saying the arch of his foot hurt-and he crawled around for a while. Again, this isn't totally abnormal for Ben. He did it a few times in the summer, his leg or foot would hurt and he would crawl or I would carry him (he is still rather small for a 5 year old). I asked the doctor about it at his last check up and at the time, there did not seem to be any concern. Now I am questioning everything!

Thank you again for the prayers, they are truly being felt! I will update again when our next test comes back.

Neurology

We had our appointment with the neurologist here at Children's Hospital. Have I mentioned how grateful I am that we live so close to Children's?! Anyway, this doctor specialises in MD and has participated in several clinical studies for it. He did a physical exam of Ben and said that his thigh muscles are weak (which we knew) and that he suspected the same as the ER docs, MD.

He did 2 blood tests, the first to check his muscle enzymes (if these are elevated, it is a positive diagnoses), and he order the 2nd test "just in case the first is positive"-this way they won't have to stick him again. The 2nd test checks for a lack of a protein called Dystrophin which will indicate which type of dystrophy he has (again, if the first test is positive). We will find out the results of the first test today (anxiously waiting!) and the other test in early January. He has also sent our information to the MDA clinic at Children's, they should be calling to set up an appointment for us. All that said, right now we are just waiting to hear the results. Thank you to everyone who is praying for us!

We had our appointment with the allergist too. Nothing came up on the testing so they want to draw blood to make sure (I wish we would have known that on Tuesday, when they did the first blood draw!!). He seems to think that it is some kind of nut that he may be allergic to. Who knows??

Stuff

Life has certainly been keeping me busy!

My kids went to a birthday party this past Saturday and I noticed after being there for about an hour or so that my youngest son started swelling in his face and lips. This happened once before, this past summer (ironically after a birthday party?!). We were told then to just give him Benadryl and watch him closely (they didn't need to see him since he wasn't having any trouble breathing). They did tell us that if it happens again, then we should take him in because a 2nd allergic reaction could be far worse.

So we went home, gave him some Benadryl (which I now carry with me lol) After about 2 hours he didn't look much different so off to Children's Hospital we went.

The Doctor there wanted to look at his stomach and legs to see if he had a rash. It was when she looked at his legs that I realized something else was wrong. She said, "wow, it looks like he has a charlie horse!" Then she noticed his other one looked the same and started asking me questions. I let her know that he has always had some trouble with walking, running, jumping...but we had it checked out when he was almost 2 and the doctor at that time didn't seem concerned....just said that his 5 older siblings needed to stop carrying him around all the time. He didn't crawl until about a year old, walked at 21 months, ran (his way of running) about 3 or 4 and learned how to jump with both feet off the ground this past spring. He is 5 1/2 years old.

The resident doctor rounded up some other doctors and did a few tests on him, such as getting up from a sitting position-he can do it, but he "walks up himself with his hands" instead of just getting up. So basically, with his large calf muscles, difficulty in climbing stairs, "climbing up himself", they have strongly encourages us to see a neurologist. They think our son has Muscular Dystrophy.

Whew! We were shocked. We now have an appointment with the neurologist, and an allergist (the reason we went to the ER anyway). I have done some research on my own and what I am seeing does not look good. But I also know that he has NOT been diagnosed yet. From what I am reading, there are at least 9 different dystrophies: and they range WIDELY in severity. Sadly, the most common one, Duchene's, is also the most severe.

Only by God's grace am I going to be able to deal with this. I called a family meeting with the children and explained that we will likely be experiencing a new kind of normal. We will still being doing school, many church activities of a pastor's family, and living life as normally as possible, with the addition of new doctor's apointments etc...

We are at the point (most of the time!) that we will just accept whatever the Lord has for him and for us. Not always easy. But His grace is sufficient for me.