So much to say, so little time!

If only I could convince myself to take the time to write nightly reflections! (But just typing that first sentence I had to stop and talk to Lillian. She's quite fussy when she's fighting her morning nap!)

Lillian turned 8 weeks old Thursday and she's been showing so much personality! She loves it when we make faces at her, and even gave me a little giggle this week when we were playing. She stays awake longer, but sleeps through most of our trips outside the house. As soon as we get home she's wide eyed, alert, and ready to be entertained! This week we took our first trip to the park, and went for several long walks downtown with Zoe and Ayla.
Some pretty exciting news on the medical issues: I've contacted a doctor in Florida that has been a HUGE help providing so much information on ways to help Lillian, and giving us so much hope for the future. She is sending me information on supplements that will increase Lillian's energy and alertness since she's primarily getting breast milk. If we fed her formula, she would get some of them from the formula, but I would rather her get my immunities from breast milk and give her the other supplements separately.

She also answered some questions I asked about Lillian's future as an independent adult. She thinks Lillian will more than likely be able to live independently, and even suggested that they WILL have a cure by the time Lillian is an adult. Hearing that from someone who is currently researching Prader-Willi means so much. I truly believe there will either be a cure for the hunger issues, or something that will greatly help them manage their hunger problems... meaning she will be given the opportunity to have a healthy happy adult life without the need to be monitored by a care taker.

I'm so convinced that Lillian will have a fabulous life! I look at her and can't see it any other way. She's already doing everything she's expected to do, with the exception of her eating through the feeding tube. When we give her the chance to eat from a bottle she improves every time.

There are times I question what God's plans are for our future. I wonder if He changed His plans for us when we were pregnant with Lillian. It's crazy to think about this, but around 20 weeks I had unexplained bleeding and begged Him not to take our baby from us. We were supposed to go on a cruise 2 weeks later (which happened to be in the beginning of the swine flu outbreak in Mexico) and canceled the trip because we didn't want to risk more bleeding or have something happen that could jeopardize the pregnancy. Normally I wouldn't be so cautious and it was a last minute decision to cancel the cruise knowing we would lose the deposit we paid... Our doctor was pretty adamant about us staying home too. I can't help but wonder what might have happened if we went on the cruise. Yes, I know this is crazy, but sometimes I wonder what would have happened. Would I have gotten swine flu? Could we have had an accident snorkeling, or on another excursion? I'm so thankful for being given Lillian and the way things turned out, but it's caused me to wonder if God changes plans when he answers our prayers...

Some pictures of Lillian this week:


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