God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)

Tuesday, September 15, 2009

In Boston

Monday, September 14
Faith and I arrived in Boston this afternoon for what may be our last appointment with the Boston team. We will miss them, but we're glad that we're at the point where we really don't need to see them anymore.
Friday was September 11... which last year gained a new significance for us. It was September 11, 2008 that we first found out that I may have lupus, and at the end of the same doctor's appointment, found out that the baby we had been looking forward to birthing at home had gastroschisis. We were obviously devastated, but could never have imagined that we'd go through everything that's happened in the year since. As awful and stressful and difficult as it's been though, I don't know that I'd change a thing. I can't speak for Dave, but I know that I have grown immeasurably in the past year, both in my faith, and in my ability to educate myself and stand up for myself and my family and what I believe is best. Before all of this, I would never have thought that anyone would ask me if I had a background in the medical field (which I now get asked on a regular basis)... now I entertain the idea that maybe someday I will go to school for nursing or something along those lines.
Faith is scheduled to have her Broviac removed Wednesday morning. I can't even begin to say how excited I will be to get rid of that thing!!! To some people it might not seem like that big a deal, but it affects virtually every part of our daily life- no swimming, baths are such a pain we just don't do them, her thigh (where her line is) has to constantly be covered or she's pulling at it... I can't wait for the first time she can wear a dress without either having to wear legwarmers or having her thigh wrapped in the Coban dressing I sometimes use to cover her line.
She's been off TPN for nearly a month now; in her first 2 weeks off, she gained over 1 lb solely on enteral feeds! She is getting so big- she sailed through size 3-6 month clothes in just a month or so, and is starting to outgrow her 6-9 month clothes already! She is finally sitting on her own (when put into a sitting position on the floor), she finally pushes up on her hands when she's on her tummy (and she's rolling onto her tummy on purpose!), she waves, and she's learning to clap! She's also fairly regularly taking around 10 bites per meal of some baby foods (mainly thick but smooth consistency- think prunes, bananas, etc) and continues to munch her non-typical favorites of beef jerky and dried fruits... she especially loves dried pineapple lately, and I'm looking forward to trying some new varieties I picked up tonight at Trader Joe's (pears and flattened bananas).
Faith and I are looking forward to a day of sightseeing and tourist-y stuff tomorrow, and I am hoping/planning to have a whole bunch of new pictures to post, so stay tuned for that!

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