Update

I literally remember taking this photo! Katie is standing on a brick and daring herself to "jump" into
their little inflatable pool. Look at Kate's face and hand- "whaaaat, Mommy?" And Liz looks as though she is
holding onto Kate to keep her from jumping, but I know she was trying to push her off.
Every Summer day, from about the time the girls were two,
I would climb into bed and say "I can't believe we made another day without a trip to the ER!" Kate was just
so active and had no real fears, and I worried daily that she would get hurt or Liz would get hurt while trying to follow whatever trick or trouble Kate was up to. Amazingly, that ER trip for an injury didn't come until Spring Break of their first grade year, when Kate fell from a tiny toddler-sized slide and broke her arm in such a way that it was in the shape of an "S" when she came crying to me that she'd fallen. And in those bikinis...I just want to eat them up!



I love looking at this picture because I can't get over how Kate in her cap, and Liz in her tiara, reflects their
personalities then.....and how they have remained over the past ten years. For those who dispute that there is a God and claim that we are all just subjects of Science, I say look at my twins.
Same DNA, identical, same environment.....and yet they were born with their own personalities.

                         Are you kidding me? How cute were are my girls? I am so glad I decided to look at old photos tonight; how much joy Elizabeth Claire and Kaitlin Alyssa have given me.....and how dang cute they have always been, inside and out.
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Last night, Walter was filling out paperwork for a Physical. He was asked to report on the health of family members, and when it came to Liz, he asked "Is Elizabeth's health good, fair or poor?"
I seriously just looked at him, probably with the same expression Liz's doctors have given me when I have asked them if she is considered by them to be sick.
It sounds like craziness, I know, but on the other hand, I think it is kind of great that we don't live thinking of her that way. This is what is happening, but not who she is. As I write this, I realize I sound like I am maybe in a little bit of denial, but it is true that though she is sick, we see her more as "normal" than sick. I am just digging deeper into sounding crazy, so I will just say that I answered him with "Ummm, she is 'poor'"
Do they have an option for "Poor....but just for now"? Because they should.

Today Liz saw GI. I like this doctor because he doesn't like to be too aggressive, but believes in addressing issues; he believes in making a plan and a goal when starting a medication, treatment or therapy; and he always speaks to Elizabeth directly.
So, his plan is that she will do a month more on TPN and Lipids, and will be weaned off. If during the time they are tapering down her TPN/Lipid "feeds" she doesn't maintain or gain weight, they will put in a GTube (a tube inserted thru the abdomen that we would feed her thru). She cannot have a PICC line forever, and it is acting as a band aid right now as we try to get her to gain weight and her nutritional status better.
Once her Prealbumin, Albumin and weight is better, if the bone marrow aspiration shows abnormal marrow again, we will know that her nutrition has nothing to do with potentially being a cause for the hypocellularity of the marrow.
Because the GI team likes the dietitian in the Cystic Fibrosis clinic, and because CF patients need to have a high caloric diet, her GI has consulted with the CF dietitian about Elizabeth. We are going to follow some of their guidelines in terms of Liz's diet and hopefully that will also help her gain weight.
Her PICC line arm is still a bit sore and she has some bruising now. If it is not better by Monday, they will pull that PICC and put in a new one early next week. She should not be having pain, and though it could be just nerves, her pain is pinpointed to the area along the line, and the doctors always worry about infection or blood clots.

There is more, but that is enough for now. We are praying that her weight and Albumin increase, her blood counts get better (we see Hem/Onc next week) and her PICC doesn't have to be pulled and replaced.