Life After Steroids

I wanted to take a minute to share with you the changes of this last week.

Steroids were rough on Matthew. I've talked about it a lot in the blog, I know, but just to put it into perspective, the doctors said this last week that every adverse effect that they can cause, they caused in Matthew - to the extreme. He was so swollen with fluids that last Thursday when they did his procedures, every place that they broke the skin was weeping fluids for hours after. His legs got so weak, he couldn't take the step up onto his potty chair, which he uses as a stool in the bathroom. He was so hungry that if he wasn't eating, he was talking about eating. His mood was so poor that he wouldn't talk to anyone but me, and most of the time even with me it was very unpleasant. There were no hugs or cuddles, and he rarely tolerated people kissing him, even on the head or cheek. He went from roughly 30 pounds (which was a little bit underweight) to roughly 48 pounds in 28 days. He went up two sizes in clothing. His belly got so big, it started to look deformed. It was shaped like a cone, getting smaller up to the belly button. I had to carry him up the stairs, and the last few days, there were even a few times I had to carry him from the couch to the bathroom because he couldn't walk at all.

We totally felt like we had lost our sweet little boy. It wore on us a lot - especially at the end. We were definitely thrilled to be done.

The day after he stopped taking the steroids, we went in for procedures and some chemo in his spinal fluid. That's when his punctures were weeping fluid. The next day, we went back into the hospital because he was coughing and had a fever. That's when he was admitted for the weekend. Over the course of the weekend, he lost two pounds. At the hospital, they measure everything that goes into the body, and everything that comes back out. The nurse told me on Sunday morning that Saturday, he had expelled a liter more fluid than he had taken in. A liter! That's like a pound of fluids!

I noticed yesterday that his eating habits have become more normal. He doesn't mind sweet things anymore. He wants breakfast foods in the morning, rather than corn dogs or mac n cheese. He eats 3 regular sized meals, plus a snack or two. It's such a relief! No more breakfast marathons!

I also noticed yesterday that the swelling in his feet and legs, and in his hands and arms is completely gone. His belly has gone down quite a bit, too. They were measuring it at the hospital every time they took his vitals and there were times it went down by a full centimeter from one check to the next - that's every four hours!

He is back into his original clothes today, although they are sort of tight still.

His belly is still big, but not so huge that it's deformed. His face is still round and swollen, but not huge like it was before.

He can climb onto the potty chair on his own, as of this morning. He can also climb the stairs on his own, but he uses his feet, his hands, and his head (I know, right?!) to get up them, and he's panting by the time he's finished. But he's very proud to be doing it on his own, because he wants to be independant.

The most important change, though, is that he's cheerful again! He's smiling and giggling and telling us funny stories. He wants different activities throughout the day, instead of just watching Spongebob all day. Even when he wants to rest and watch cartoons, it isn't Spongebob at all. He wants to get up and play. He wants to exercise his mind. He plays with toys, and blows bubbles, and plays with his flashcards to learn his letters and numbers.

Yep, life after steroids is good! We're still waiting to hear the results of all that medication, but right now, I'm just happy Matthew is starting to feel better! Now, if he'd just stop coughing we could enjoy his break more!