Forward HO...

I guess having little time to update the blog translates to more time spent with Olivia. Good time at that. It's as if writing that blog the other night was the apex of the bad and we've had GOOD ever since! Livi has been wanting to get out of her room, play in the play room, paint, make necklaces, visit new friends/patients and play games. It's been great for the nurses and other patients/families to get to know who our daughter really is. It has especially been nice for us to have our "lover" back. My dad spent Monday with Livi while I got to have a little me time and go to the gym. Our neighbor's boys played with Aaron while Karen and I grunted my frustrations away. Dad seemed to have a good time with her and actually got to spend more time with her throughout this week. He did finally decide to spend some time at home, and I'm glad he did. He flew out this morning to go home for a week. He's been such a huge help from laundry to cleaning mine and Bill's room, even making our bed and fixing roast for dinner. (I don't even think he made my bed for me when I was a kid!) I wanted to give him some time with Livi and also some space from Aaron. Aaron is at the fun stage of repetitive questioning. I could tell it was starting to wear on dad...I can't say that I blamed him. On top of everything going on here, Monday, Dad also had to put one his dogs down. If I could afford you one guess you would get it right...cancer. Does it ever stop?Monday evening Livi was feeling well enough to walk to PICU next door. She was released from her non-rolling pole (only 2 of the 6 wheels spin), donned a Mickey Mouse face mask and walked through to strut her stuff. There were some parents with their baby who had been in PICU when Livi was there. It was nice to see them smile at Olivia as she shuffled by. My heart broke for them wondering if their baby girl would ever walk. The nurses and doctors all smiled and made a big to do out of her walking through. It was a great way to show them our thanks. Later, back in her room we watched "Ratatoullie" and had a couple visitors from the floor. Dusty and Tealan (2 teenage boys with Leukemia) have been great and say hi to Livi anytime they see her. Whenever we go on walks Olivia always wants to stop by Dusty's room. She's pretty emphatic about it. But when we get in, she clams up...crush? If it is... I say great. One more thing to get her out of the room is simply just one more good thing. Yesterday Dusty was having a bad day and Livi kept saying, "I hope Dusty feels better soon." What a sweetheart. The boys are great and return the love whenever they can. They've both crashed Livi's room a couple of times and played around with her. Later on Monday night, around 11:00 or so, we went with Dusty and another teenage boy named James to the teen room and played Scattergories. It was quite interesting being that everyone was on their night doses of pain meds. Livi had a good time and even answered a couple of the catergories right on. With all her strength and smarts I do have to remind myself...yes, she's only 4! Earlier in the evening I was reading some cards to Olivia that had been sent to her from loved ones. They spoke of Livi's courage and strength and the power of prayer and one mentioned the blessings of the priesthood being restored to the earth. She could not contain the tears that were welling up in her eyes. She started sobbing and asked instantly for a priesthood blessing. I called Bill, told him of the happenings and he came right down. Through the power of the priesthood, he was able to bestow blessings upon Olivia from her Heavenly Father of peace and comfort and strength. I was so grateful for her desire to have a priesthood blessing and her knowledge of what they are and what they're for. And yes...I remind myself...she's 4. There is definately something greater going on here that I am blessed to be a part of.

Tuesday, Bill got off early and was able to spend some time with us at the hospital. (He had been doing protection for Obama while he was in town.) We got to meet a family who's 3 year old daughter had just been diagnased with cancer. They found a tumor on her spine that was about 6 inches in length and ran through towards her stomach. Dr. Bernstein was anxious to get Olivia in touch with this girl to spark a friendship of sorts. As soon as we saw her we knew why. It was our little Olivia, except with black hair. She wore the same scowl on her face that has wrinkled Livi's brow for weeks. Livi noticed it too. She decided to give her a little stuffed puppy that a friend had sent 2 of to "keep her company", she said. The little girl said, "I don't want it." Livi looked at me and smiled, "that's what I was like!" We all just laughed. We sat in the playroom together and beaded necklaces and watched Livi come alive. She was being her chatty little self and even spelled the word "steroid" on her necklace. (It's amazing what they catch on to.) Ever since meeting her, she slways wants to know how Alyssa is doing.
Yesterday, Wednesday, the GI doctors decided to let her start eating again. A VERY low fat diet. She was so elated at the news she actually started laughing! This picture with the cereal was her first food in nearly 3 weeks! So far the diet itself is questionable and nobody seems to be on the same page. For lunch today, and remember this is from the "low fat" menu, they sent up a hamburger! And we wonder why so much of America is obese! UGH! I went to the store and bought nonfat dairy products, fruit, sweet potatoes and nonfat pudding for a treat. Up to date she has eaten what's in the picture below, yogurt, fruit, Rice Crispies and oatmeal. After she eats she complains of stomach pains and that scares me. She's been having good bowel movements and that could just be it, but we're wary, as are the doctors that it could be her pancreas. Yesterday we had invisioned coming home within the next several days. She's been mobile, she's come off most her meds, she's eating...but today we got new news from the GI surgeon. Seems that the C-T Scan finally came through clearly and shows that 70% of her pancreas has died! That's alot. The pancreas has a head, body and tail. Only the head of Livi's is still functioning, but the "plumbing" is not safe. She tubing that carries the enzymes from the pancreas to the intestines to break down fats is shattered. The enzymes can't fully get to where they need to go. If she eats fats the pancreas is going to have to send out these enzymes. The more fat the more enzymes and the greater the chaos will be. Hence the non/low fat diet. All this being said means several things. The GI docs want to keep Olivia in the hospital for the next 6-10 weeks (that is the time they think the pancreas will take to rework itself to insure proper function). That is also the time that it will take for any pseudocysts to form off of the dead pancreatic tissue. If cysts form they will have to surgically removed. With how much of her pancreas has died chances are very high that these cysts will form. (Another way for the body to get rid of the dead tissue is to liquify it and pass it through the body itself.) The last thing in this mess is something that many of you may be asking at this point, non-functioning pancreas=diabetic, right? Well, at least, Livi's chances of becoming diabetic have gone up 50%! I don't even want to think about that right now. Sometimes I wonder if this will ever stop. If our lives will ever be "normal" again. But then again, this craziness has been going on for over a year...maybe this is our "normal".








The music people came again today and Olivia loved it. She shook the shakers and beat the drum and even "danced" in her bed a little bit. What a difference from last week. The music people couldn't believe it. We are grateful for it! In the afternoon she's pretty wiped out, but it's from having a good day!

Through all this insanity Aaron has remained and even become more so, a great kid. He, out of neccessity, but nevertheless has become much more outgoing, social and fun loving. Our neighbors, upstairs and next door, have really stepped in this last week to give my dad more of a chance to spend time with Livi before he had to go home. He has been swimming with them everyday and today even went on a "wee bit of a tramp" (hike) up at Mt. Charleston. I tease our neighbors that when Aaron finally does start talking he's going to have an odd mix of accents: English, Scottish, and New Zealander! He puts his jandalls (flip flops) on his feet after he's gotten his swimming costume or togs (swim trunks) on and they go swimming in the morning or savo (afternoon). They all lovingly refer to him as their "wee little man". I love it and I love them. They keep me grounded and sane. Most importantly they keep me laughing.

A testament of, "we'll do anything to get Livi to laugh." This is a roll of "tape" bubble gum...

JUICY!