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

Saturday, November 20, 2010

November 22, 2010

The crazy schedule continues. We have quite a few appointments lined up at Children's in between all the therapy sessions.

Tomorrow we're at the Children's Clinic at Mass Eye and Ear. Benjamin's eyes are still a mess. He will focus, but only briefly and then his eyes will either cross or he'll drop his gaze. He avoids his mobile completely now, but for some reason he's fascinated by the warning label on inside of his carseat. Go figure.

He's actually going to see a urologist next week. When we met with the nurse practitioner and doctor in CCS (Complex Care Service) we went over, in detail, his medical history. I mentioned that he had a renal ultrasound a while back and we were told it was normal. Well, when they uploaded the ultrasound report, we found out that he does still have calcifications in his kidneys!

Benjamin's been working really hard over the past few weeks with his physical therapy and we're noticing a slight difference. His neck seems to be getting stronger, and his grasp is a little tighter. He's 8 months old, 5 months adjusted, and at about 1 month developmentally (at least that's according to the milestone charts I've found online). We have a long way to go, and it's unbelievably frustrating at times, but even the smallest amount of progress keeps us pushing forward.

We are still having major issues with the bottle, but I am cautiously optimistic because he's started nursing a bit again. Knowing Benjamin, this could come to a screeching halt, but hopefully not. It's a good thing I didn't stop pumping completely, but I have been trying to bump my supply back up because he's losing a little weight and it's not easy. He's still being fed at night continuously over the pump for about 11 hours. That being said, if he's not getting enough right now during the day, at least he's getting a good amount at night. When we met with CCS, he wasn't taking the bottle, he wasn't nursing, and he was spitting upwards to 4 times a day. They started talking about more surgery (possibly a nissen fundoplication or converting his g-tube to a gj-tube). We were adamant that he does not need the fundo or the gj-tube. Since that meeting, the reflux is still noticeable, but he only spits maybe two or three times a week. I think now that he's not spitting nearly as much, and he's obviously not in pain when he swallows (because he's nursing), I don't think the endoscopy is necessary either.

Let's hope the little man keeps up the good work and starts gaining some serious weight again!


  1. Yay! This is good news! I'm so glad he's nursing again sweetie! And sounds like he's making progress developmentally, too. Go Benjamin!

  2. So glad he is nursing for you! Our bodies are amazing and I am sure your supply will bounce right back. You guys are doing such an amazing job with your family. Hope you have a wonderful Thanksgiving.

  3. How wonderful that he's nursing again! I'm sure most would have put aside pumping long ago, with everything else that you've had going on. Benjamin is blessed to have such a devoted Mommy.

    God bless --

    Cheryl Hess