Sisters

It has been on my heart to write a blog post about my sister. There is just so much to say, I don't know how to condense it or put it into words. I thought I would be able to tonight, but I cannot. Still, I found these photos and will at least start with them.
Megan and I are 14 months apart. I do not remember life without her. She came along and stole my thunder, I am sure, and in the process made everyone she has ever met fall in love with her. She was spunky, fun and has always had a sparkle in her eye that is half mischievous half glamorous. As a child, I loved her and couldn't stand her, all at the same time. She "took" my friends, read my diary aloud in the middle of our street and kept her side of the room a disaster! We fought and cried and even taped a divider down the center of our room so that we could stay separated. And still, the first nights on my own in my apartment without her, I was so very homesick for her.
As an adult, she has become one of my best friends. She has helped me more than you would ever imagine... taking over for caring for my kids while I am in the hospital or appointments with Elizabeth. There was one point where she stayed for 18 days with first Elizabeth and then Kaitlin, as each was hospitalized back-to-back. The girls were only 7 weeks old and Meg cared for them as well as any mother could.
I could go on, but I won't. My sister is amazing and I am grateful for her.



"Borrowing" (and obviously acting out!) Meg's bottle. Was I cute or what?!








{Who cares that Baby Megan, who cannot swim, is running into the bay. Take a picture of ME!}




And then came a brother. The Prince. The favorite...which is a blog for another day. : )
Nevermind the woman who obviously just departed the Mayflower!

Elizabeth loves to put together plated food. She may not eat it, but she has fun making food look pretty on a plate. She dices, slices, sprinkles and garnishes her food with anything that resembles what she has seen done before. She actually does a great job! You do not want to eat most of what she makes, but it looks good. Today, she had Kaitlin and Jack compete in a "Quick Challenge" to find the Top Chef of the Noel home. Thankfully, I did not get the honor of judging it!




Chocoate with bananas, dusted with cinnamon and garnished with lettuce. Hungry, anyone?



Kaitlin cracks me up! I wish you all could have heard her post-cooking commentary at "Judges Table!" She was awesome.








Jackson did not eat any of his chocolate creation. He promises!

For the past few days I have been feeling especially lucky, blessed and grateful. It is the kind of gratefulness that makes me smile and sigh all at the same time. How lucky am I with all I have?! Someone I know said "but you really aren't lucky. Things are kind of bad for you right now." Ummm, no! I mean, things are tough and I would do anything to make Elizabeth well and assure she'd never have to face any of these things again. I would love to have all the money we spend on medical bills back. I would like some other things to be easier, but really, I am so blessed.
In comparison to this person's comment, someone else also mentioned to me recently that my life seems so great. It is! But, please know that it is not perfect. My writings reflect mostly good things, but I am not perfect...just ask my kids, particularly on a day when I am stressed, short tempered and not feeling very grateful!

I certainly have done my share of complaining, but oh my, it seems people complain about so much! I know two people who complain on a daily basis. Every day is a hard day and every difficult situation, for them, carries the weight of a total crisis. How taxing and sad that must be! These are healthy people who have friends, money and family. My goodness, if every day is hard when you have these things, then I think you need to reevaluate things.... find gratefulness!

Yesterday when I was at the hospital to Mentor, two of Elizabeth's doctors saw me and gasped, assuming she was inpatient. I was grateful to walk out of the hospital and pick up my girl at school and bring her home, healthy(ish). I was, as I always am, overwhelmed with gratitude for my healthy kids, as I sat bedside with grieving parents who have some very sick children. If you have a healthy child, let me remind you how blessed you are. Do not take that for granted. Ever.

Today I am especially grateful for a husband who works so hard for our family and who rises early and works late to provide for us. I was also grateful when he paused before walking out the door this morning, while the rest of the house was still sleeping, to cover me with an extra blanket and whisper for me to have a great day. Another day I will get into why that act means so much, but for today I will just say that that simple act is a metaphor for us. I feel lucky today to have traditions to share with my children that make them giggle, smile and think of our family. Today I feel blessed to have girlfriends, a warm home and corned beef and cabbage.
I could go on and on with my list of gratefulness, but will simply close by saying that I hope today you feel grateful too.

Oh..... I am also grateful for little boys who see a motorcycle at Costco and assume, as easy as buying papertowels or a mega pack of granola, one can simply purchase the bike and ride off. : )

Gross!

Today has been gross. Not gross like flu-gross (that's a whole other level), but pretty gross. I started my day collecting and digging through Elizabeth's, um, stool and ended it checking the kids for lice. Somewhere in the middle was finding the girls' mini-compost box, complete with earthworms, in their bathroom! They did the compost project at school and brought it home. Instead of putting the box outside like normal people, they named the worms and vowed to keep them as pets...IN my house. No, no no.

Casually, around 8:00pm, the girls mentioned they had been called to the office with only one other classmate to be checked for lice today at school. So odd, so I dug a little and found out that a child from their school, who was at the party they were at on Saturday, has lice. So, the nurse was called to check them. Ahhh! They do NOT have it at all, but I freaked out and rushed to the store to buy Lice-ridding shampoo. Target had not one bottle left on their shelves, and so I had to hit up another store. I then stuck all three in the shower and gave them treatments before stripping down all the beds in the house. Gross! It was while in the girls' room gathering bedding that I found the worms in the bathroom...you can imagine what may have been discussed then. Gross, gross, gross! This was all done late on a school night, when my gross little ones should have been in bed.

I am itchy, convinced I have lice, exhausted and grossed out. Walter just walked in from work, clean and calm from a workday I can assure you did not include poop, worms or lice scares, and asked how my day was. Um, it was GROSS!


Now do they look like identical twins?








"Edward the worm"

Get your own poop!

Elizabeth is going to drive me crazy. Honestly. She is going to get over all of this health stuff and I am going to be left a crazy person because she has broken me down. For days I have been begging her to let me collect her stool. She has refused. First, she told me the doctors and I could collect our own if we wanted poop to take to the lab. Then, she would go to the bathroom and come out, after she'd flushed, and let me know she'd gone and "oh well" I missed it. Grrr! This sounds incredibly disrespectful of her, but there comes a point when I have to let her feel control over this situation and even let her voice her feelings and frustrations, no matter how sassy they may sound. I needed the samples to take to the lab to turn in when she was there to get labs drawn and she knew that, so she was holding off the trip by not letting me have what she knew we needed. Pretty darn smart!
Finally, she cooperated this morning. Out of nowhere and without prompting or begging, she called me into the bathroom. What the heck?! After the days of tears and anger and resistance, she just simply called me to her. Oh, Elizabeth Claire!
She'd fasted last night and this am and we were able to get to the lab. She was in a panic because she hates missing even 30 minutes of school, and the trip was taking extra-long because we had the lab techs in a scramble, trying to figure out how her blood needed to be drawn and processed. I guess her orders were pretty uncommon and it took time for them to figure things out. I was able to calm her down and even get her to eat something after we left the lab for school.
I am grateful we were able to get this done. Her doctors acted quickly in getting us the orders and these labs will be so helpful to have before her two big appointments in the next couple weeks. Hopefully, the results will guide us in helping her gain weight, too, as these labs are specifically looking at the way Elizabeth's body absorbs nutrients and also if her body is absorbing iron (more specifically, iron into the bone marrow).
I could go on and on (and on and on and on) about how screwed up our health care system is and also how frustrating it is to drown in medical bills that come about because of caring for an ill loved-one. But at the end of the day, I am grateful for a society where health care is even available. I am also grateful beyond words for doctors who not only care for Elizabeth, but treat her with kindness and urgency.


You got me here and now you want a picture? What am I supposed to do? Smile because I am getting my blood taken?


Yes, Liz. I want you to smile, you brave girl!


Ahhh, post-fasting yumminess.


Practically running into school... where she is always happy.

Update

Today Liz had an appointment at the Hem/Onc office she's been going to for the last year. We were scheduled to see Dr. Finkelstein today, who we haven't seen since he did her first bone marrow biopsy last March (we usually see other docs in the group). Dr. Finkelstein is HIGHLY regarded, a whiz and amazing with children. He is the face of "being passionate about something and dedicating your life to it." He is dedicated to saving lives and helping kids.

Anyway, I was looking forward to getting his take on all that's been going on with Elizabeth. Instead, the Nurse Practitioner walked in to see us. I do not care for her in the first place, so that, coupled with my disappointment of not having Finkelstein in the room, gave me the guts to speak up and say I was expecting Finkelstein and would wait to see him. She acted irritated, but I did not care.
I am glad I have learned to be an advocate for my daughter. I have had to fight for her and learn this crazy medical system from the inside out, but it is a privledge to do so on her behalf.
Dr. Finkelstein spent 45 minutes with us and was wonderful. He had the girls holding their stomachs in pain from laughing so hard and he held my hand as I held back tears of frustration. Here is what he thinks:

1. I am smart! : ) A professional said it, so I just had to document it : )
2. Liz is too thin and that worries him. Kaitlin was with us today (she never is, but it was a good thing she was today) and he was struck by the size difference and of course the documented changes in Liz's weight. He thinks, like we do, that she isn't absorbing nutrients.....
3.Along with not absorbing nutrients, he thinks maybe she has malabsorption of iron. Rare (not the same as having low iron), but her GI history lends to a reason this could be happening. Malabsorption of iron could lead to issues with marrow and blood counts, which she has ( even though she doesn't have low red cells).
4. She'll have absorption studies done and a specialized series of labs looking at her iron.
5. Dr. Finkelstein will oversee the "what happens next", as far as her blod and bone marrow is concerned, once the results from those studies are in. Take that Mrs. Condesending-Nurse-Practitioner-Meanie! : )
6. Hopefully these labs can get done before her March 24th appointment with her GI doctor so we can come up with a plan of treatment when we see him and have the results before her April 7th appointment with a bone marrow specialist at CH Los Angeles.

A looonnnnggg road to go. But today I feel like a plan may be starting to come together and a diagnosis found. I was heard and validated today and not told that the plan was to "watch her carefully and wait." I am tired of watching and waiting, I need a freaking plan and I feel like we may be on our way to that.

Please pray for wisdom for the doctors and for a diagnosis to be found so that we can treat Elizabeth. Pray for patience for her as she enters this next month of heavy testing and visits to the doctor and hospital.

My happiness...

On a whim I took pictures of the kids tonight. Elizabeth looks GREAT today! Totally, wonderfully, absolutely great! Her cheeks are sun-kissed after a weekend in the sun and her eyes don't look as sunken. The giggles and the way the girls are intertwined make me smile. What happiness in these pictures! Thank you God for my beautiful, happy, loving children. How lucky am I?!