Getting out TODAY!

Today is the day Elizabeth finally gets to come home!

Last night I managed to get her room all neat and cleaned up for her, and this morning I'm changing her sheets (the cats have taken advantage of her not being here and cozied up in her bed...) so her room is nice and fresh for her. The cards and messages that I haven't brought to her in the hospital will be waiting for her on her table.

The presents that we've received from friends and family are filling the corner in the living room, still waiting for a Christmas tree. We kept waiting for a day that Elizabeth felt good so we could go on our family outing and pick a tree, but that day just wasn't happening this year. When Elizabeth was finally admitted, we realized that we still didn't have a tree, and with the three boys alone, I just couldn't imagine having to get a tree home and set up by myself. I'm sure I could have if I had to, but I'm glad my mother-in-law mentioned to Dad that there are Christmas trees available to order ONLINE, that are shipped directly to your home via UPS! Isn't that crazy? I'd have posted the link earlier, but I only got my order in under the wire (on the last day for ordering). But here is the link for anyone interested in planning ahead for next year: www.classicchristmastrees.com. Our tree straight from an Oregon tree farm should be here by tomorrow. Then it will finally feel like Christmas here, with a tree to decorate and Elizabeth home.

Elizabeth is continuing to improve, but she's having extreme gas pain again. We're hoping it's because her bowels are trying to resume normal activity, and that the gas pains are temporary. She is coming home on two antibiotics (vancomycin and cefapime), and will still have the two biliary drains (with lovely collection baggies to juggle). We will bring her back in the day after Christmas for follow up.

One interesting note, that if anyone has even anecdotal information about I'm interested in hearing about it, is that she is not on ceftriaxone (on cefapime instead) because it is known to cause "biliary sludging" in neo-natal infants. Funny, back in June through August Elizabeth spend 6 weeks on ceftriaxone for her lung/over the liver infection. Dad and I are wondering if that could explain the biliary blockages Elizabeth just experienced, since there is no tumor causing it, no gall stones causing it (she has no gall bladder), no pancreatitis causing it (she has no pancreas), and there really is no other possible explanation. This would be a good thing, since if medication caused it, and we avoid that medication, Elizabeth shouldn't have a repeat occurance of this thing.

Dad and I had to stop Elizabeth's ambrotose for the past few days while she was inpatient because it seemed to be causing an immune response of low grade fevers. Unfortunately, the efficacy of ambrotose and it's instrumental use against cancers is not recognized in the medical community, and simply explaining to the docs to let us take Elizabeth home with a fever because it's the immune boosting supplements doesn't work to our advantage (they look at us like we're nuts, and keep Elizabeth in). Amazingly, Elizabeth's low grade fevers seemed to cease once the ambrotose was held. We'll put her right back on it once we get her out of the hospital. It can be frustrating sometimes, but learning what to do and say so that things move in our favor has become second nature.

We'll be going straight from the hospital to the Make-A-Wish holiday party, since it's right down the street at one of the studios. The kids are looking forward to it, and it's part of the reason we got the docs to agree to release Elizabeth today. They wanted to keep her until tomorrow, at least. At this point, we're experienced enough to know that there isn't anything they can do for her there that we can't do for her here at home. And she's much happier at home, so it's an added bonus to get her home where she can heal better with a better attitude.

It's been tough this year not being able to do all the fun Christmas family outings that we usually do. We are so grateful that there have been so many hospital/charity holiday parties for the kids. Elizabeth can't tolerate a whole lot right now, and the controlled events are designed for kids like her to be able to have some fun. And it is so wonderful that the boys are included as well. If it weren't for these events, our family wouldn't be doing anything out of the house this holiday season, and we are so grateful for them.

Time to go pack Elizabeth's dress selections to bring to the hospital so she can choose one to wear today, and get the boys dressed and ready to go. Please keep Elizabeth in your prayers. I really am hopeful right now. Maybe it's just that time of year, but I am starting to believe that if Elizabeth's body can just have a break from fighting all the infections and complications that keep coming up, her body can get strong enough to fight and beat the cancer. It took so long for us to get Elizabeth started on the supplements--part because we were afraid that it would feed the carcinoma, and part because I was afraid to hope. Teri didn't give up on us, and when she brought us the ambrotose to start, there was such a change in Elizabeth that for the first time in a very long time I believed anything was possible. She found us a sponsor, and now Elizabeth is on the full program of supplements. If any of you (or your employers) need an end of year tax write off, Teri's non-profit that she is just getting off the ground can be found at www.macsproject.com. Another great one is the Michael Hoefflin Foundation at www.mhf.org. I can tell you that these two groups take the money and directly impact families. We were on grocery and gas support through the Michael Hoefflin Foundation for a year, without even asking for it. Teri got us a sponsor for Elizabeth's Mannatech supplements (which are NOT cheap), without us even asking. They look for ways to help and just do it. I am so thankful that they are looking out for us.

Merry Christmas!