Hi Everyone

[Guest guest]

Hi Group,

I'm sorry that I've been away for so long. It's just been one thing

after another. Over the summer I was babysitting up to 8 kids, and working a

full time job. Then school started, and I was so wrapped up in taking Dalton

to school, and his mutlitple therapy appointments, along with working full

time. With the holidays, I'm finally able to rest for awhile. Irene was

kind enough to instant message me, and to get me up to date on some of the

group happenings. I've also talked to Biddy. She called me late one night.

Her ammonia levels are very high, so she's extremely confused. She's still

not listed though. I'll give you an update on myself, and on Dalton....

Late October I started feeling really sick again. I had chills, nausea,

vomiting, fever and pain. I went back to my GI, and he wanted to put me in

the hospital. This went on for quite awhile, and I ended up in the ER, with

the typical meds of antibiotics, pain and nausea relief. The day after

thanksgiving, I was admitted into the hospital through the ER. Most of my

liver enzymes were elevated, and so was my White Blood cell count, my protien

levels, and my calcium levels. My potassium, and my albumin was low. I was

admitted to the telemetry floor, and was put on a heart monitor because of

the potassium. After a few hours I was transferred to the surgical floor.

Each day when the DR came in, he told me that my liver enzymes were going up,

and my white blood cell count wasn't coming down. They were not giving me my

Aldactone (for swelling) so with the IV fluids I looked like I was 9 months

pregnant. They finally started me back on my aldactone, and lasix, and took

me off of the IV fluids. They decided to do yet another ERCP, which showed

the disease is not in the larger bile ducts, and the DR that did that,

released me. Two days later, I had to be admitted again, so it was back on

the IV fluids and off of the aldactone again. Again, the swelling got

extremely bad, and had to be treated. I was finally released after being in

there for almost two weeks. At my follow up appointment with my regular GI,

he told me that most of my small bile ducts are strictured, and there's

nothing they can do for it. He said he doubted that I would get better after

this infection, and recommended the University of Pittsburg's transplant

center, because of the multiple infections. My transplant center no longer

does any living donors, and Pittsburg does non-related donors. I've gotten

in touch with them, and the coordinator said that I would probably be listed,

I just need to finish all of the tests for the transplant evaluation. Since

being in the hospital, I've gained 20lbs in swelling, so I'm back on

Aldactone, and now lasix. Because of the potassium issue, I live on bananas

and orange juice.

And now an update on Dalton: He's doing very well, and becoming a

typical child by doing things that he's not supposed to. He's getting a lot

of control back in his hands, and can hold a marker for a short period of

time to color with. (His ears and face usually get colored more) He can take

steps now with his foot braces on (he could only stand with them before) and

can stand for a few minutes at a time, with only his hands being held to keep

his balance. He can say five words verbally, and even more in sign language.

I'm learning sign along with him, and he thinks it's a cool secret language.

He can eat a fourth of a jar of baby food at lunchtime now, and we're

working up to a half of a jar. So, even though the progression is extremely

slow, he's still progressing. Along with the regular therapies, I'm also

taking him to an alternative therapy that's extremely intense. Of course he

hates it, but I'm hoping it will help him.

Thanks again to everyone for their thoughts and prayers. And, thank you

to everyone that sent me a Christmas card. That was so very sweet, and

touching. I enjoyed reading all of them, it made a wonderful Christmas.

I'll keep checking in on all of you, and hopefully can rejoin the group

completely.

Love,