"The days seem to fly!"

This is a statement that Bill and I have said to each other quite often as of late. Since Olivia was diagnosed it does seem like the days are flying and we can't quite figure out why. Perhaps it's because we never really seem to have complete down time. Even right now, I force myself to update the site for everyone who logs on, but also for myself. I'm finding it's a great way to journal a little more in depth than I'm used to, and that's a good thing. And again, perhaps the days fly because it's broken into routines that seem daunting and unforgiving. Much like having an infant all over again. An infant, as all of you well know, doesn't do much more than eat, sleep, poop, spit-up and cry. My infant's 4 years old! And don't get me wrong, everyone that has ever had the opportunity to care for a newborn knows how rewarding/satisfying it is, and I feel the same. Often times, I have woken up with Livi laying next to me in bed, Bill has left for an early morning run, and I gently stroke my daughter's cheek. Deep inside I yearn to pull the covers off of her and see a healthy baby girl who is full of life, happiness and joy. I swiftly shuffle through the dreams of what a wonderful day we could have riding bikes at the park, chasing after a ball, or climbing across the monkey bars. I think, "Maybe if I close my eyes tight enough, wish hard enough, or just scream loud enough, this burden will disappear and all will be as it should. But, alas, the slumbering princess stirs, her calico eyes open to reveal dark sunken circles and a look of pain. A simple look from her seems to plead so deeply. "Please help me, please be careful to not hurt me" she says. And out of bed we slide, ever so carefully as not to hurt her frail body. Reality has sunk in for yet another day.

WOW! That was a good cry!!! Whew, okay, on we go. Another thing about newborns is night feedings. "Of course you don't have those with a four year old!" one might say. Oh, but you would be wrong. For all of you who were up feeding your own little ones, or who were just up for the sake of BEING INSANE at 1:30 Monday morning, you should've dropped me a line. Olivia started calling for Bill so, not knowing what exactly she needed, he went running (if you call stumbling through a dark hallway with your brain in the latest dream you were having, running) to Livi's room only to find her propped up on the living room couch. "I'm hungry!" Dr. B. did warn us that this day would come. Since Bill has to "work" during the day, I got the night feeding shift. At first she wanted a "turkey taco with avocado salsa" but the turkey was gone. I love my daughter, but there was NO WAY I was going to dethaw and brown turkey meat at 2am!I talked her into a hot dog and some potato salad. As she sat there scarfing, I prayed that this could be a meal that she could "please keep down for a change". (The picture on the right was her 2nd bite. I realize it's a bit graphic, but the first bite tasted really good and she was gonna get the hot dog with everything she had!)

The night turned out just fine. She woke up the next morning just fine and actually wanted another hot dog for breakfast! At this point I feel a need to talk about her size. These pictures may be very hard for you to look at (they're hard for us to see too). Olivia is very thin and has extreme muscle atrophy. Please know that Dr. Bernstein is fabulous and we trust in everything that he is doing. We've had great help from friends on ideas of what to eat to gain weight back healthily and not just to eat pointless calories which won't help her. Last night a friend from church brought over a whole bag of groceries with great healthy fatty foods, packed full of protein and vitamins and other great stuff. Livi loved it. Today we were enjoying some "chips" and spinach artichoke hummus and she asked, "Is this a healthy fat or a bad fat?" I told her this is a very good fat that will help make her strong. She said, "like avocados?" What a smarty pants! So,...we're working on it. She even still asks about the exercise aspect. Bill walked with her to the pool on Sunday to stick her feet in and change the scenery, while Aaron and I attended church. Today, she wanted to go again. I found her putting sunscreen on before I even mentioned it. I offered to carry her if she got tired but she refused. She clenched her tiny hand in a fist and said, "No! I need to exercise." She can't get up any type of step without assistance and if she becomes the slightest bit off balance she falls. (This has happened a few times and scares us all very much.) We are proud of her and grateful for all the strength of her heart!

Olivia is showing an interest in getting out more. Yesterday our neighbor, Elaine watched the kids so I could run some errands. I got home and Liv took a nap. When she woke up she was out the front door and to Elaine's before I even knew she had left. I explained that she wasn't home and she started to cry. She was determined though and started tramping her way over to Karen's appt. It's upstairs though, so when she got to the bottom of the stairs she stood there crying. I carried her up, with Aaron in tow and had a nice visit for a bit of the afternoon. Livi didn't say much if anything at all, but it was good for her to get out.

Speaking of getting out...Bill and I got to go out Saturday night. A great friend from church and her daughter, Hannah (who had actually babysat the kids before) came over and sat with the kids for the evening. It was so nice having a mom here to help Olivia. As I was explaining Livi's drug regimen to Denise I laughed and told her she'd be a certified pharmacist by the end of the evening. It was great. Bill and I went to a place South East of town called The District. It's an outdoor shopping mall with live music and even a movie at dusk. We didn't stay for the movie, but we enjoyed the band, or at least tried to. Lots of people were dancing along to the music and having so much fun. Of course there's going to be a blond little girl about Livi's age having the time of her life...needless to say I couldn't stay. Bill wrapped his arms around me and we continued through the shops. It really was a fabulous evening.

This picture I just couldn't refuse. Aaron has been such a...(sigh) funny kid. Considering all the chaos in his new little world, he's been doing great. He loves to get right in on the action, as is obvious by this caption. Today, a great friend from church, who just had her 3rd baby a few months ago, came and picked Aaron up for a play date. He had a ball. Thank you Suzy!

Thank you ALL for EVERYTHING you do to help us feel loved and supported. Keep it comin'!