Updates, Updates.

Sorry, I know I haven't been updating the blog. I hate leaving people to hang when they care, but sometimes I just can't get myself in the mood to even talk about the issues once the kids have gone to bed. Its been way too long since my last update though.

Things here are....alright I guess. I get a bit frustrated with our situation at times. People often ask if Lucy is "better" now, if shes "improving". I have to pause and decide whether I want to give the long answer to those questions or the short one.

She's well, gained a couple pounds, seems to be digesting her formula a bit better than before, and has a lot more energy than before the GJ tube. But because the GJ tube is not a cure, and is merely a different way of supporting her GI system so that she can live, her problems are all still very much still there.

Her stomach still sucks. At this point nothing moves at all, and I am stuck draining her stomach around 4 times a day or else she can throw up. Even at a rate of 60cc's an hour into the small intestine, her gut can swell up like a 6 month pregnant lady. While her energy levels have improved, she sometimes comes home and crashes from a playground session or ballet, needing extra sleep, extra fluids, and time to bounce back.

Yesterday we ran a couple errands and met up with a homeschool group for a playground day, so we were away from the house out and about for hours. Lucy played and had a great time, but by the time we left for home she was totally worn out and ended up hurling in the car on the way home because I hadn't been home to drain her stomach. In hindsight, I should have just stopped off at my nearby inlaws to properly drain her before venturing home, but it just really stinks that we've been reduced to that.

We started seeing a psychologist a few months ago, and Lucy's assessment came back with flags for depression. Really?! How does a 4 year old end up in that kind of boat? She seems to be in a stage where she's really picked up on the fact shes different from everyone else and isn't happy about it. She keeps asking when she'll be able to eat, why it is shes not allowed to eat, why she has to have this or that done at the doctor's office. Its a hard time for her, she seems to have become so aware all at once.

But, it is what it is. We have the hand God gave us. We have many many gifts. We aren't in a hospital or unable to run and play. Lucy lives her life as it is. We have bad days, but we also have very good ones.

Good things have happened in the last few weeks too. There are things to be thankful for. Lucy is tolerating some types of gum, which makes her very happy. Like I said, her energy levels have really perked up since the GJ. She actually runs, plays, and seems interested in normal activities again. Her mood is greatly improved as well, so much so that her psychologist is giving us some time off to see how she does.

So, with all that being said, we are here, we are doing alright. I know this blog is supposed to be about updates on Lucy, but sometimes I don't know how to do that. I never know how much to reveal, how complicated to make these posts, or when to just point blank say "I wish things were different."

But, if you've been checking and regularly thinking about Lucy, and waiting for an update, I thank you. Thank you for keeping her in your thoughts and prayers.