Life is Beautiful

The past week has been amazing. Dominic has emerged as this whole new baby we've never seen before! He is laughing, giggling, kicking, and batting and holding his toys. His sleeping is a bit off. For some reason he can't get to sleep at night. Last night Mike had to take him for a ride in the car at 12:15 am. But, within a minute, he was out. He's up a lot during the night too, so I'm still not getting too much sleep. But I'm thinking as time goes on and he gets more on a schedule things will get better. He's had a couple of rough months, so I'll cut him a break.  His occupational therapist was here yesterday and could not believe he is the same baby she's seen for the last several weeks. She was so impressed by his interaction and progress. That's always a good sign! Sleeping aside, it is just incredible what a difference it makes to have a happy baby. I will never again take for granted each smile and giggle he makes.

My Boys

We head to the pediatrician tomorrow and next week Dominic has his Diagnostic BAER (hearing test) as well as another EEG. The couple weeks following he will see the neurologist, infectious diseases doctor and opthomologist again. Hopefully, if things continue to improve, the doctors appointments and lab work will start to slow down. As you can see from the photo above, he is still carrying some extra weight, although only in his face. The rest of him is pretty normal now. The neuro said it can take about a month for the swelling in his face to go down. He is also phasing out some of his meds. Now that he is off ACTH, he still stop the Zantac this week. Next week is his last week of Valganciclovir (anti-viral for the CMV) and he has also stopped Carnatine. His neuro also reduced his Vigabatrin dose yesterday as well. He still hates med time, but at least he's down from the 9 medications he was on.

Everything in general is looking up. There were a few weeks there I didn't know if I'd make it. I was consumed with fear, anger, anxiety and most of all, guilt. But now I am feeling much, much better and I am enjoying life again. Even with everything still going on with Dominic, I am happy again. Each morning I wake up and I am filled with pure joy when I realize how truly blessed I am. God has been so faithful and has carried us through some of the darkest months of our lives. He is working in our family in so many ways and I am looking forward to seeing what else he has planned for us. When I stand back and look at my life, I realize that life really is beautiful.