Our baby, Harper, was born August 22, 2011. She was diagnosed with Down's Syndrome within her first week, and 4 1/2 months later was diagnosed with Metopic Synostosis (the bones in her forehead prematurely fused). Through it all, God has allowed us to sense his presence. He hasn't taken us out of our trial, but He is carrying us through.
Wednesday, February 15, 2012
One of my concerns is that Harper hasn't pooped in several days. Wai-Yee recommended having her do this before surgery. The picture is of her eating prunes; I think she enjoyed them. We'll wait and see what happens.
This has been a really long day. Harper had appointments all day today.
We met with a research nurse first; she was asking for our consent for Dr. Jimenez to keep the bone he will remove from her forehead. There has not been much research done on craniosynostosis, so he requests to keep the bones and other data he collects for research purposes. The nurse, Wai-Yee (pronounced "why"), went over our surgery times and procedures. Harper is first! Thank you, Lord. We report at 5:30 AM and surgery is scheduled for 8:00. It will take approximately an hour.
Next, we met with Darren, the helmet guy. He put her in a laser scanner and scanned her head. This was just for outside measurements. He also took manual measurements of her head. We will go back Monday after her surgery for him to do the same thing, then they will make her helmet. The helmet will touch parts of her head and have quite a bit of space in others. This way as her head grows it will follow the path of least resistance. When the fused portion is opened up in surgery and the helmet is worn, it allows her head to correct itself naturally as it grows.
This afternoon we met with Dr. Jimenez. He was very nice, and didn't make us feel rushed. If we learned anything new, I can't remember it now. He went over some of the same information as the others and took time to answer any questions we had.
We also met a couple from North Carolina today. They were here seeing Dr. Jimenez for their final checkup. I meant to take my camera today, of course, I forgot it. I will try to put up pictures in a few days of the map hanging in the hall. People come from all over the US and different parts of the world to have Dr. Jimenez operate on their baby.
If everything goes well, she will be dismissed Friday. We will spend tomorrow night in PICU, and hopefully be dismissed the next day.
Thank you for your prayers. So far, we are making it. I know all the prayers for us is carrying us through. I do not look forward to tomorrow, though.
Much love, Brook
Lamentations 3:22,23 Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.
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Praying for you this morning Little Miss Harper!
ReplyDeleteOur family is praying for you all. Thank you so much for sharing your journey with us. We trust God will continue to carry you.
ReplyDeleteBlessings,
Jill & Brooks Davis