3 hospitals today

Hospital #1: Children's. After waiting over TWO HOURS to see our cardiologist, we finally did. Luckily, he is worth the wait. He was impressed with Moriah's condition; his words were "I can't believe it." He really thought by now we'd be seeing signs of heart failure, including labored breathing and a lot of sweating. Her heart also sounds good, and her EKG went well. He explained to us that often children with Down syndrome have a lung resistance that can mask the seriousness of their heart conditions; the resistance can also postpone the symptoms of heart failure, which is, of course, dangerous. Or...her heart is growing some tissue that is closing the holes in her heart. Given the huge size of one of the holes, he said he would be shocked if this were the case, but he wants to take a look to see what's going on. So in one month, we're going back for an ultrasound (an echocardiogram) so he can see the holes. If they are still there, he's going to want to put her surgery on the calendar (because if her lungs continue their resistance, they can actually be damaged by 6 months of age, so the heart should be fixed before then). Or, if they are closing, he may decide she doesn't need surgery after all. This was huge news, as it's the first time anyone's ever mentioned that surgery may not be necessary. I know so many of you are praying for a completely healed heart, and we are so grateful...in some ways, you are standing in the gap for us when our own faith and energies for prayer and meditation are so weak. Whatever the outcome, we trust God is working into us what is good, and working through us what He must. Over and over we keep asking Him to get ultimate glory through our family, even if this means our discomfort and suffering. I'm reminded of the disciples' question, "Lord, why was this man born blind? Was it something he did?" and Jesus' loving and very difficult-to-take answer: "This was done that the work of God might be displayed in his life." We are asking God to work acceptance and surrender in us, and this is no easy or light thing, as we find again that the things that most point to God in our lives are often our weaknesses, our fears, and our suffering.

Hospital #2. We were late for our appointment at Orilus' hematologist at Mass General. A week and a half ago, Jimmy Fund had been unable to draw his annual post-transplant labs--he's a really hard stick. So we asked to try at MGH, and after waiting an unnecessary 45 minutes there today (notice a "waiting" theme here? Maybe I'm going to learn/re-learn patience as part of this ultimate surrender stuff...maybe), this incredible nurse actually got in on her very first try. We were PSYCHED. Orilus was so happy that as a joke he asked for a Barbie band-aid, and was rewarded with a Hello Kitty one, as Barbie was all gone. :) We left laughing.

Hospital #3. Moriah returned to the Cystic Fibrosis clinic for a re-do of her sweat test to see if she has CF. And this time...they got enough sweat! Results are pending; we should find out tomorrow.

We left the house at 9:30 this morning, returning with all 3 kids in tow at 5pm...a truly exhausting day.

In other news...Moriah is looking so healthy, having gained nearly a pound in a week--she's up to 8 lbs, 12 oz now. Her formula situation seems to be resolving (again); we're just praying she's not allergic to this one, too...once we get her adjusted, we'd hate for them to find blood in her stool again, and have to switch again.

Meanwhile, God's dealing with our own hearts in so many ways; sometimes I think that it is our hearts that need the most "work"--need to be enlarged, and softened, and grown--while Moriah's heart will be found to be the most perfect. I pray this is so.

I heard this today: "Happiness grows in direct proportion to our acceptance and in indirect proportion to our expectation." We are working at surrendering our expectations, laying them down, and opening our hearts to acceptance instead.