What is normal, anyway?

I started this blog with the intentions of talking mostly about "normal" life. Alan has a CaringBridge site, I have Liver Families...those are places for liver disease. But -duh- I have been reminded again that liver disease is as much a part of our "normal" life as anything else. Right now, liver disease pretty much IS Alan's life. :( I know that sounds kind of dramatic, but there are just those days that you can't escape the BA. (And then there ARE days that it slips into the background and you hardly notice it is there...I love those days).

Monday was a morning full of phone calls, an afternoon of errands, and an evening of misery. I'll start with the phone calls:
- Had to get special permission from the pediatrician's office to go in at get immunizations without actually seeing a dr. No problem. I love those guys. :)
- Talked to Children's about Alan's next appointment.
- Got a call from the insurance company letting us know they had approved Alan to be listed.

Now the errands:
- To the pedi's office for Alan's shots. The highlights of that trip actually revolve around Dale! He loves the train that circles the waiting room at about 10 feet in the air. We didn't have to wait in that waiting room yesterday, but we stopped at the big picture window and then the door both on the way in and out. Then in the waiting area outside the immunization room there were NO toys, but one copy of Green Eggs & Ham. We read the entire thing! Dr. Seuss books can seem so long, but that one was so much fun to read yesterday! And Dale gets closer to being able to read it seems like every day. He saw me typing on the computer today and said, "I want to type 'so'. I don't know where he learned that word, but I let him have the keyboard and he typed 's' 'o'. He's such a smart little cookie. :)
-On to Walmart. In 6 months time, I think I have yet to buy groceries on my own with Dale AND Alan. I didn't intend to start yesterday. Greg was also in town on some errands and we had planned to meet up at WalMart. My plan was to wait for him to get there and then we would have a kid in each cart. In the meantime, I put Alan's carrier up top and Dale in the big part and we started fun-shopping. The only problem was that Greg got held up and by the time he got there, we were all tired, Dale was dancing from one foot to the other having to pee-pee for the second time, I had a loaded cart and couldn't take that in to the bathroom, I couldn't leave Alan out in the cart alone, I didn't want to bring him in and set his carrier in the floor, I coudln't carry just him in and try to balance him and help Dale at the same time, and I coulnd't send Dale in alone. This is when I called Greg and said "are you here YET!?!?" He was in the parking lot. Of course we were stationed at the bathroom at the BACK of the store. But he hurried and Dale made it home with dry pants. Whew!

And the misery:
Poor Alan. I really don't want to tell about him feeling so bad ... of course Greg and I have to see it and deal with it, but I want to protect our parents and grandparents from knowing. No need for all of us hurting for him. We don't know why or what, but it is like pre-kasai colic all over again. This is almost a week of it now. Even though we are trying so hard to give him lots of calories to avoid the NG tube, we decided to skip his supper-time solids tonight and just do milk. We felt that if that is what is causing his pain it would be worth it. But, right on schedule he tuned up again tonight too. But tonight we were able to lay him in bed at 9 instead of midnight and so far (knock on wood) he's stayed asleep.

Today....oh, today was uneventful I guess. The boys & I went to see Nana & PawPaw this morning and stayed about an hour. Dale has a habit of asking for a snack just about every time we go, but today that ended up working out really well for me. When we got home I was able to get Alan fed and down for a nap without Dale starving for lunch. After lunch Dale and I sat down for a couple of games of Candy Land.

I have a Candy Land confession - or maybe it is a helpful hint. If you've played, you know that a game can drag on forever, because just at the time somebody is making some progress, they get one of those picture cards and get sent halfay back down the board. Not in our game! Why? Because I've stacked the cards! Ha! All those pesky picture cards are in order, and come up at just about the time you are passing by the Gumdrop Mountains or Lollypop Woods anyway. Ha! (and it just so happens, I've learned that, in our current stack, if you go first, you lose, go second, you win - I did one of each today) :)

I can't let the day go by without noting that Alan was officially placed on the waiting list for a liver today. The pager should arrive in the mail later this week. Then we will start to understand what the waiting is really like.
In the meantime we'll just stay busy shopping and playing Candy Land...but I may have to restack those cards....just to keep things interesting. :)