In October/November, Benjamin was sick for five weeks. Five weeks. He had Hand, Foot, Mouth, pnuemonia, Fifth's Disease, and who knows what else. The worst part wasn't the sleepless nights. Or the constant trips to the doctor, having to shift Andrew around in the process. Or all the medicines or breathing treatments.
No. The worst part was that I missed my Benjamin. He just wasn't himself.
Then, after so many weeks, I just broke down. On Thanksgiving of all days. It just hit me how hard it was to have a child with special needs. How this was now our reality. How I feel like I am always waiting for the other shoe to drop.
Then December came and he was well. We had a wonderful Christmas. Toward the end of December, Benjamin, who is normally a great eater/milk drinker, started fussing during meals. Then the fussing turned into screaming. Then the screaming turned into food refusal. (Who is he, Andrew?)
This, naturally, for my poor parents, escalated when Matthew, Andrew, and I were at Disney. And while I have always loved my cell phone, I especially loved it when I was at Disney, because not only was I able to talk to my mom, I was able to consult w/B's pediatrician about what to do.
The temporary solution was to offer him his food before his milk, as the milk consumption might be exacerbating another issue. (We'd already upped his Prevacid dose twice since November.) So that worked...kind of. Then she thought maybe he had another intestinal obstruction, like the one that was repaired last January.
Before we even got home from Disney, however, he, along with my mother, caught a bad cold. Once we were home from our magical vacation, it was time for me to snap back into Mommy-of-a-Needy-Child Mode and do all I could to help my poor child.
He went two weeks ago for another upper GI to check for obstructions. There were none. His intestines look great: no obstructions, no malrotations, no twisting. Just some reflux. So we are on the schedule to see a gastroenterologist (sp?) in March (they book way out).
In the meantime, the screaming has gotten better, though the cold has persisted. Andrew got a sore throat shortly after Disney, as did Matthew. Then I got it. And mine came w/a nasty cough and a runny nose. My cough was so bad I had to get a (heavenly) prescription cough medicine so I could sleep. Looooove it.
Then Benjamin's cold added a cough.
Wednesday was his monthly synagis shot. He had a cough but the doctor told me to bring him anyway. She listened to him, checked his oxygen, and said that it kind of sounded croupy but not definitively. His lungs sounded clear to her. She said if I wanted, I could wait it out a few more days.
Then yesterday I could hear fluid when he breathed.
My heart just sinks when this happens.
I know that children with Down syndrome are more prone to upper respiratory infections. They have excess mucous and small passageways. But knowing it and living it are two different things.
I called the doctor at 1:05 yesterday. By 1:45 I was on my way downtown to Children's for a chest x-ray while my mom was on her way to pick up Andrew from preschool. (Matthew was in a meeting and couldn't even be reached until I was at Children's...thank goodness for my mom!)
This picture was taken while we waited for his chest x-ray. Poor little bub.
I couldn't go in the room w/him b/c of Thomas, but thankfully he didn't really notice. They're always so good down there; he was just fine.
Then we drove to the doctor's office for her to read the film.
There is a slight haze in his lower, right lung. Not a full-blown, round pneumonia, but the start of something.
And lo and behold, he has an ear infection. His first ever. Andrew's never had one. And it's actually surprising that B has never had one, considering he's more prone to them.
So we're doing Albuterol in the nebulizer (breathing treatments) for his lungs and Amoxicillin for his ear. There's not much you can do for the cough besides a humidfier and Vicks on his feet w/socks.
And already this morning, he is more like himself. Even after only one dose of the antibiotics. He actually giggled with me at breakfast. I swear he's "gone" for so long that when he "comes back," I don't realize how much I've missed him. I get so accustomed to just being in Mommy-Take-Care-of-Everything Mode that I forget that sweet giggle when it's gone.
People with typical children who haven't necessarily been through all of this sometimes say, "Oh, I don'tknow how you do it."
But we moms who "do it" know. We do it because it is what you do.
I worry about leukemia. In the back of my mind, I think, "I can deal with the Down syndrome and pneumonia, but I could NOT deal with leukemia."
But then I know.
Yes, I could.
Whatever it is in life that God deals me, I can deal with it. Because I am not in this alone. I have a wonderful, nurturing, supportive family. I have terrific friends, many of whom I've never even laid eyes on. And I have an all-powerful God. He calls the shots. And all of it is for a reason. (Not that I want B to get leukemia, God, in case You were wondering...lol)
I need to stop now because I have normal things to do. Laundry, shower, feed my boys. Things like that make me smile (though I get sick of doing them, yes, even showering) because they are routine and predictable.
But I do want to blog more about some things, namely the preparation for Thomas and how my mind is having a hard time expecting a "normal" child.
Thanks for reading. :)