Thursday, November 3, 2011

Beautiful boy

It's just over a month now that we learned Rowan was sick. And honestly, I think it's harder to accept now. I have been more emotional- more scared-more heartbroken as time's gone by. Don't get me wrong, I adore my beautiful boy. And that's why my guts hurt.

A couple of weeks ago Rowan developed a small rash on his inner elbow. Steve's been taking him to the neurologist to check it regularly. They're worried it'll turn into Stevens Johnson's Syndrome, so no one wants to take it lightly. it. Last Friday Steve and Rowan were at the doctor again to have levels checked and the rash looked at. Steve called me and said, 'don't freak out'. So immediately, I started freaking out.

The doctor said Rowan would likely have to be admitted to the hospital, either here or at Mayo so he could be monitored for the rash while his meds were reduced or stopped. She is a pediatric neurologist, but she doesn't know everything...

She made some calls to other doctors and decided we wouldn't have to be admitted, which was wonderful!  We'll go there eventually for outpatient appointments, though.

They took Rowan off of Topamax and we're to watch the rash- it's now a week later, but the rash is still there, so we'll see tomorrow what comes of that.

Rowan had a swallow study done today to see if any liquid was going into his lungs.  We have been worried about that.  He's been vomiting from time to time and has a cough pretty regularly.  If he wasn't swallowing well, a feeding tube would be the fix.  It would break my heart to go that route since sucking is one of the things that makes him feel better.  So happy to say that his swallowing is great for now- a little weak, but nothing seems to be going into his lungs.

What a relief that was today.  I sure needed that.

My beautiful boy likes classical music- we listened to it in the car on the way to our appointments.  His eyes were open, focused, and he didn't make a peep.

He's been around a little bit more the past two days.  I wish I could convey what a gift that is. He tried standing a little last night and I was so proud of him.

He is so smart....

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