Tuesday, May 15, 2007

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. :)

Sunday, May 13, 2007

Mother's Day Weekend

Happy Mother's Day!!!

It has been a wonderful Mother's Day weekend here - I hope the same for all of you. Hugs to everyone who has lost a child or mother.

My weekend started with Greg telling me I had the day off Saturday. He wouldn't let me do a THING! :) He made waffles for breakfast and cleaned the kitchen and took care of the boys, and this was all before 10am! Around lunch-time Alan & I headed over to Mom's and she & Kristin and I spent the entire afternoon hi-lighting our hair. We had a great time and did an excellent job on each other, if I do say so myself! To protect the innocent (or is it the guilty...? lol) I will refrain from posting any pictures of the work in progress. :)

For supper we all gathered together for a fish fry! Gramps and Dale (i.e. Gramps) did such a great job fishing Friday we got to eat fresh fish! We lined up our fryers outside and got going. Mom and I were so proud of ourselves - she was cooking fish, I was cooking fries & hush-puppies...the first time for either of us to be fry cooks! And then...distant thunder...a little more thunder...a few big plops of rain, and...the down-pour!! Ever moved a fryer full of hot grease from outside to in? How about 2? In the pouring rain? Lol. Everything turned out great though, and everyone was stuffed, with plenty of leftovers.

When I got home, I saw Greg had planted pink petunias in my pots out front while I had been gone as an early Mother's Day gift from Dale. These were what I had out last year and had the best luck of anything I've ever grown!
(A couple of very smart ladies taught me that daily watering is the key! - Happy Mother's Day to you both! ;) )

Today began with Greg cooking breakfast again (I could get used to this!) and then the rush to get out the door to church, while doing last-minute prep stuff for lunch. We managed to get all 4 of us to Sunday School, and even on time (pretty much, lol)! Alan and I spent most of Sunday School in his private nursery (he was hungry), then we ended up spending most of the sermon back in the nursery (he was restless). Oh well...I still felt like I was at church, and I enjoyed both of those times as special one-on-one time with him.

Lunch was great fun - a hamburger cook-out in our backyard, followed with everyone telling special memories of their moms. We mostly laughed, but we cried some too. Fun continued with an impromptu awards ceremony by Nana and an exchange of gifts.

Alan has had a little bit of a rough day. I can't quite put my finger on it, but he just doesn't seem to feel good. He fell asleep with me holding him today and wouldn't let me put him down, so I just went with it:

Ahhhh...Mother's Day bliss! (or any day for that matter!)

Friday, May 11, 2007

Friday, May 11

It's nice to have everyone home in their beds tonight - we all spent the day scattered over north Texas!
Greg drove the middle school band to Dallas on their spring trip. Everything went well, including driving a school bus home through rush-hour traffic!
Dale spent the whole day with Gramps! First man-shopping in Paris, and then on to an afternoon of fishing at the lake with Granddaddy.
Alan and I had a busy day as well. I got to sleep in a little bit since Dale had spent the night with Mimi & Gramps, and Alan had been up from 5am-6am, so he was sleeping late. After breakfast we met Mimi at Wal-mart (reminder to self: our walmart is always out of what you went for, so save yourself the trip!). Since the walmart trip was a bust, we met up not much later for lunch at the library. Alan and I stayed at the library until the county clerk's office re-opened after lunch. A short walk and $23 later, I had an official issue of Alan's birth certificate.
(We will need a copy of it to apply for some of the financial programs Texas has for children with special medical needs. We definitely qualify on that count! Most of these programs either have a very long waiting list, or take a long time to process. It could be 6 months for some and 2 or 3 years for others before Alan is enrolled.)
Once all of our down-town business was taken care of, Alan and I went home and he took a well-deserved nap. Since all the big guys were still out of town, Alan and I went over and had supper with Mimi & Kristin. Alan has really been loving drinking from a cup the past week or so, so tonight I put some of his double-strength formula in a cup for him. He doesn't get a lot that way, but I figure every way we can get extra calories in him will help.
So now, Greg is home, the boys are in bed, and we are getting ready for a Saturday at home together! Enjoy your weekend!
I can't believe I've started a blog!! What's gotten into me?!? Ah, well...I thought it would be fun to chronicle some of our goings & comings...because there are a lot of them!

I thought to start with I would lay a little ground-work and mention some of the things going on that are likely to be recurring themes, so I can save myself some explaining later.

In no particular order...here we go:

Greg is just finishing his second and final year as head band director here. He definitely has a job for this fall - details on that to come in the following weeks.

Alan has been put on the waiting list for a liver transplant due to Biliary Atresia. He is 6 months old, eating solids, and rolling over.

Dale...well..you know Dale...and if you don't, keep reading, because he is very quotable! :) Dale loves NASCAR, trains, and most everything else about his life. He will be FOUR in August. Wow!

We recently tore off all the wallpaper in our bathroom. It was a huge chore, but for the most part it is a fun project for Greg and I to do together and not think about liver disease and stressful jobs. I would call it our first major home project together. Hopefully I can write more about the bathroom project soon. Very soon. :)

We are 18 days away from Vacation Bible School at church. This is my third year directing. 18 days!!!

So, there is a little bit of what's going on. I don't know why I'm being all formal here....most of you who are going to read this probably already know that (Hi Mom, Nana, Mary Alice, Kristin, etc!) :) Basically, I decided on a whim yesterday to start a blog, and I have to talk about something!! I'll try to be interesting. Happy reading!! :)