Life

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, Duchenne'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 appointments 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.

Originally posted at www.familiesareablessing.blogspot.com on November 30, 2009.