Daniel Update

As I've mentioned in a couple posts, alot of our "getting settled" process has been getting Daniel to all of his doctors appointments. We were told that Boston was the best place to be for all of D's medical issues and people were right on, we really feel blessed to be in a place where every specialist really knows their stuff and help is at our fingertips. So far we've met with his cardiologist, GI, Orthopedic, Early Steps (he is right on track, except for his weight) and 2 dietitians/nutritionists. We have an upcoming genetics specialist we'll meet with in a couple months, if not sooner.

Daniel has already had a sedated echo, where they looked really closely at his heart, x-rays on his spine and lots of blood work. Tomorrow is a big day for him, as he'll be getting a catheter cardiac procedure. That means, they'll insert a catheter into his leg (while he's asleep, under anaesthesia) and up to look even closer at his heart. They are concerned with the uneven pressures on the blood flow in his heart. Brian, as always, could explain the medical side of this way better than myself. We'll have lots more answers after tomorrow about when his next open heart surgery will be. He will stay overnight tomorrow and I will stay right next to him at his bed.

Our biggest concern with Daniel lately, other than his heart, is of course his weight. The cardiologist said we may be able to pinpoint a reason for his slow gain in the procedure tomorrow, which would be a huge help. He eats well most meals, drinks his milk so-so (much better than his bottle days), but with all the calories we give him, he should be gaining more. Its so frustrating.

But I will say this...he is the most amazing little boy. He walks everywhere now, and still has the proud smile when he does walk. He's so proud of himself! He is extremely mischievous, but quietly so. He is a huge ham and has begun to love cuddling with me, often stopping play to run across the room, huge grin on his face, to give me a hug and lay his head in my lap for some love. He reminds me so much of Nolan. He adores playing trains and cars and thinks its a blast to run full speed down hill...Nolan at least did this in grass, but Daniel prefers concrete. His eyes are still the most amazing thing you've ever seen. I love that all 3 of my boys have the most gorgeous blue eyes, but each differs just slightly in tint. D's are like looking into a clear blue pool, or like drifting in a sky. They are magical. I've gotten off on a tangent, but I'm hoping that my emotions will drift out to you enough to know how much we could use your prayers tomorrow and in the upcoming months. I love telling Daniel how many people are praying for him and pulling for him. We love you all and will be updating the blog and facebook tomorrow!

XOXO,