"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Saturday, September 24, 2011

September 24, 2011

I can't believe it's been a little over a year since Benjamin came home from the hospital. I wish I could say he's made unbelievable progress this past year, but that's not the case. Because his seizures are still not controlled, we recently decided to move his neurology care over to MGH. Our meeting with the new doctor went really well, and she's already making medication changes. I can't even describe the feelings we go through with each new medication... first there's excitement and hope, and then despair and frustration. I can't wait for the day when we realize we've found the right concoction! It saddens me because I can almost sense that Benjamin wants to move and communicate, but it's like he's trapped in this body that doesn't work very well and a mind that's confusing him.

I've been obsessed with his teeth or lack thereof. I've asked almost every medical professional if they can tell me when he's going to cut a tooth. I was so desperate for an answer that I even cornered a dental hygienist at a fundraiser we went to (I thought Ryan was going to hide)!

A dear friend of mine, who had a little guy in the NICU when Benjamin was there, warned me that preemies' teeth sometimes come in black from all the antibiotics and other medications they had. Well, as fate would have it, over the past day we noticed Benjamin's bottom right tooth coming in and the bud is brown! So of course now I want to push the darn tooth right back in! For goodness sake, as if the poor baby doesn't already get stares, now we have to deal with this.

Not much else is happening around here besides more doctors' appointments and therapy sessions. I apologize to those who have called me, or sent me messages that I haven't been able to return. I wish there were more hours in a day. Between appointments and work, I've been trying to keep the little princess busy. Thankfully she's loving school. I guess there's a little boy in her class that has a crush on her and has been singing songs about her. As if we don't have enough to worry about!