Friday, March 10, 2006, 6:05 p.m., C.S.T.~

Dear Journal~

I am FINALLY off for the weekend! I had a long, hard week at work at the hospital; had some very busy days in the E.R. Glad it is overwith! :)

My daughter, Ronee', is sick today: she woke up with an upset tummy and a headache, as well as joint pain and nausea. She has been in bed all day, and I finally got her to eat some soup. So far it has stayed down, but she doesn't have much of an appetite because she is in so much pain. At least she isn't in the hospital; she isn't THAT bad off. At least she won't miss school tomorrow, as it is Saturday, so she can probably rest.

Johnny is doing okay, but I am still waiting for that perverbial other shoe to drop. With muscular dystrophy, one can never really relax because it is often so unpredictable. I HATE worrying about whether Johnny will have difficulty in drawing breath or feeling weaker than usual or having yet another seizure.

I have been worrying ever since I saw the book he got at the library yesterday, "Just Peace", co-written by child peace advocate Mattie J.T. Stepanek (himself a victim of a rare form of muscular dystrophy [dysautonomic mitochondrial myopathy, which affects the body's ability to control temperature, heart beat and rate thereof, breathing, and blood pressure conjtrol, amongst other things]) and former President of the United States, Jimmy Carter. Matthew (Mattie) Joseph Thaddeus Stepanek died less than a month before his fourteenth birthday due to complications arising from his disease, and ever since I have been on pins and needles in regards to Johnny's health and well being.

I don't know WHAT I would do if Johnny were to end up like Mattie Stepanek: hooked up to a ventilator (or a trach tube in order to breathe), or totally bedridden, unable to care for himself. I don't wnat to think of him getting worse beauuse up to now, he has been doing so splendidly, much to the amazement of doctors and therapists.

Johnny wasn't expected to live beyond the age of five, and now that he is thirteen, his health has suffered. He STILL can do a lot of things for himself (walk for shorter trips on crutches, write, read, feed himself, etc.), but he can no longer brush his hair or teeth without help, has to be carried from place to place, turned every two hours when he is in bed, and be catheterized every two hours (or suctioned).

It is a sure sign that his muscular dytrophy IS getting worse, and to tell you the truth, it scares the living hell out of me. I wish there was a cure available so my son wouldn't have to worry about dying or whether he is going to get worse down the line. Muscular dystorphy has been so hard on ALL of us, not just HIM, and not knowing what is around the bend is probably the hardest thing to deal with this disease.

The kids have very little in the way of homework, so they will no doubt be playing outside or with each other or with their games and toys. I guess they are behaving because I haven't heard a peep out of them; have to make sure that they are okay---

I am still trying to work on my e-mails, but each time I TRY to get one answered, lo and behold, here comes another one! I heard from Ellen Jones in Indiana, and I also heard from Don Hickmon in Washington State, as well as Kendra Williams from California. Kendra now has two foster daughters she is taking care of, as well as her own children, and she was telling me that the reason Johnny hasn't heard from his little girlfriend (Rebekkah Rachel Cohen) is because she has been sick herself. She got some sort of infection, and she ended up in the hospital. I don't know if she is out now or not, but that child has been through so much with her health; I really feel sorry for her! I just pray she will be feeling better soon!

The weather was really wild last night and early this morning: we had tornado warnings just about all night, and it boomed and bammed outside, interrupting much needed sleep for ALL of us. Johnny's weather radio also kept going off, and I wanted to TOSS it right out the bedroom window! GOD, what a rude awakening!! No damage here, but one woman WAS killed in Burlison, Tennessee, which is near Memphis (I THINK; I am not so sure WHERE it is!!). I think more people may have been killed; I don't know; I wasn't awake when I was listening to the news on the way to work this morning! LOL

Now it appears that supper is about ready, so I am going to round up the troops (MINUS Ronee'!), and have them eat their grub. *grins* I am going to eat myself; seems that my tummy is talking to me. Until later, this is Louisiana signing off!

~Love, Louie May Sandusky. :)