Strongest Girl EVER

I didn't really think I'd be here a week into February posting about how Elizabeth is doing, still, when we came home at the beginning of last month. Of course we still vacsillate between believing we are witnessing the grandest of miracles and worrying that she may not make it another day, but it is no longer a matter of wondering if miracles happen. Every single day that Elizabeth is continuing to fight and win is a huge miracle at this stage in and of itself.

Elizabeth has been feeling better ever since we got her started on the minimal IV fluids (through her central line--no needles) with sugar in them (D25, 0.5N saline, run 12.5mL/hour). Once we got her blood sugar (with no pancreas, she has been severely diabetic since 6/04) higher and steady, she has been up more and talking more. Her constipation (pain meds in general, and especially methadone, can cause constipation) has finally seemed to respond to the Senna, and yesterday she didn't need any break-through pain doses of methadone. Her scheduled dosing of methadone (we are up to 15mg/6 hours) was sufficient, and she NEVER complained about pain. When we asked her she said she was "okey dokey" and the pain was "0", which is huge. The constipation was causing terrible gas pain (which the methadone actually does very little for) that made Elizabeth moan and groan. It has been bad and worse for the last two weeks, but finally her bowel movements are coming daily and the pain seems to be resolved.

Elizabeth also ate a little yesterday for the first time in two days. She had fritos with guacamole and started back on her Junior Mints and Jelly Belly jellybeans. She is also drinking more again. And while she is feeling good enough to be on the couch for a bit about every other day, and I am thankful for that, she is still backsliding on a couple of fronts. The thing we are most worried about is her continued loss of weight. She has no cheeks any more (facial or otherwise), and looks like such a frail old woman. She certainly doesn't look (or act, for that matter) like a child. I don't know that there is any more fat or muscle mass left on her body for her to lose, and I don't know how long she can keep going without gaining any weight back. Her poor little body is really just skin and bone and so fragile. I am heartbroken any time I look at her and take in her physical appearance. But she is still Princess Elizabeth, fiesty as ever, still running the world around her.

Keep praying for a miracle. She had a nightmare yesterday during her nap in which she was in surgery and "they did it wrong" and her heartbeat went "thump..
thump....thump.........thump..............and then I pooped out"--her words. She woke up terrified. She is not ready to die. She isn't looking for us to tell her it's okay to go, because she still has life left to live. She just isn't ready yet. Please pray that this all can still move on her time schedule. Maybe she knows that she isn't supposed to die until she's 80+ years old, and she's determined to stick it out!

Back in the fall, Elizabeth kept saying she wanted to go on another Disney Cruise. We said sure, we can do that again in a couple years or so. She said she wanted to go for her 7th birthday (May 2007), and that this time she wanted a 10 day cruise. Maybe she's holding out for that?! What an amazing celebration THAT would be!!

Thank you for believing and praying for Elizabeth's miracle. We have received miracle upon miracle all along the way, and every day we are witnessing more.

As for my minor situation, I did see Dr. Helena Chang (Director of UCLA's Revlon Breast Center) yesterday morning. My right breast duct needs to be removed, but I have a couple of months before it HAS to be done. So the good news is that I have time. It is more likely than not benign, but even if it is DCIS (ductal carcinoma in situ) I have time. So I am thankful.

Thank you again for checking in. Take care and hug your babies.