Tuesday, October 29, 2013
"It is our deepest honor to invite you and your family to come visit the wishing place for the special occasion of making your wish. Please bring this key with you when you come for it alone will open the wishing room at the top of the wishing tower. We eagerly await your presence"
Lila got her invite to Make-A-Wish. We are so excited. Our wish grantors are coming over this evening to come meet her and get to know her better. Excited for the process!
Monday, October 28, 2013
Sunday, October 27, 2013
Saturday, October 26, 2013
We got ready for the Halloween carnival up at my parents ward. I decided that lila should be sleeping beauty, a bit because everyone always asks me if she sleeping. I thought it would go along with her demeanor. We had never tried on her costume till today, and when we did it was magical. Lila laughed kick and smiled. She loved putting on her princess dress. It was so fun!
I saw these crazies at the carnival. I can't believe I started to watch William when he was just one years old. Now look at him he's almost as tall as me!
Happy birthday to the most amazing man! We are so lucky to have you in our lives. You are an incredible father and husband. We love you so much! You have made our lives easier, more spiritual and definitely more fun!
We miss you and hope you are having a fun birthday trip to USC. Go utes!
Thursday, October 24, 2013
When we got home from Park city today I had a package waiting for me on the porch. It was from my friend Margot. Inside was a letter from her little boy asking Lila to be an honorary member of his baseball team. They are the Cubs this year and they knew how much we love the cubbies. Lila was so excited when I told her about it. She got her big eyes and started to smile and laugh. It meant so much to her and to us.
Lila's team mates
There was also a gift for me and for Ruby. My absolutely Favorite new necklace!
I hope I don't embarrass her by sharing this. But this was one of those moments where I was truly touched by someones generosity. This whole experience with lila has shown me that there are such amazing and wonderful people out in the world. It was quite the pick me up that I needed after the hospital. I am truly grateful for the lives that Lila has touched. And for those people who continue to bless ours.
Thank you so much!
Wednesday, October 23, 2013
While Quinn was hanging out in the hospital he wrote down his birthday wishes. I thought it was pretty hilarious.
Quinn’s B-Day wish list in Alphabetical order
I recently informed the family after dinner I would send you my birthday wish list in alphabetical order. Here Goes
A. pet AARDVARK. Why you ask. Because when you start any list alphabetically it has to start with aardvark regardless of criteria.
B. BARISTA classes. I would love to learn how to make all the drinks I will never drink
C. CURE for Vici syndrome. Seriously. This is number 1 on the list
D. DIMES from every year since the beginning of dimes. I need a new collection and dimes take up the least amount of space out of all the coins.
E. An EVENING with Ben Bernake so I can ask him one question. Really!?!?
F. FRONT row tickets to a magic show. I want to know how they do it,
G. GIRLS, GIRLS, GIRLS named Kristi, Lila, Ruby. Nice idea Motley Crew.
H. HOT air balloon bungee jumping. I haven’t done anything really stupid in a while.
I. IGLOO made of sugar cubes. That’s what they are made of right?
J. JESUS is my homeboy t-shirt
K. KANGAROO jammies. I need a place to put the remote while keeping my feet warm at the same time.
L. LOCKS of hair from each family member to complete my weave. No one will know the difference.
M. One MONTHS supply of spitz cracked pepper sunflower seeds. So 31 bags
N. NOTHING. Wow that’s lame.
O. ONE last joint. C’mon you all knew
P. PINK tickets. So I can sell them to Riss and buy half the stuff on my list.
Q. QUALITY paint job on 4-runner. It’s getting embarrassing being seen in public.
R. RUBY snaps cookies. If they taste anything like Ruby’s cheeks I’m gonna be fat in no time.
S. SMARTIES SUCKERS. As many as you can find
T. TRIP. Anywhere just not the hospital.
U. UNDER Armor anything. I’m dumb that way
V. VELOCIRAPTOR. That’ll upgrade the guard dog situation
W. WEDNESDAY night football tickets. What? No football on Wednesday? That’s stupid
X. XENA warrior princess bobble head. If I cant get the paint job I’ll need a second option to upgrade my ride.
Y. One YEAR subscription to the jelly of the month club. It’s the gift that keeps on giving.
Z. ZERO accountability. What is cooler than doing what I want when I want how I want with no repercussions? Perhaps a little out of your price range but one can hope.
Tuesday, October 22, 2013
We are home! This little fighter is amazing! I don't know how many times we have heard that she shouldn't have made it through this. She is incredible.
We ran out of there. We were so excited. I think I was giving the nurse a panic attack because I kept pestering her to leave.
What we learned this time: The little lady's kidneys do not process potassium correctly. So she gets rid of it through her urine. We will have to take a potassium supplement for the rest of her life and continue to check her potassium levels with blood draws. I always am amazed when I find out these new things about Lila that she has survived this long. She must have so much to do. So many lives to touch.
Monday, October 21, 2013
Bad news. Lila's potassium skyrocketed To 5.0 They wanted it to stay at 3.5 but Since they were pumping her full of potassium it makes sense that it got so high. Her body just reacts differently than most kids that I think It must have taken her a while to retain the potassium and now it's way too much. The medicine that they were also trying out for the Pseudomonas Orally didn't work so we are stuck on IVs. Which means stuck in the hospital. Ugh.
Little Ruby is 12 lbs. 5 oz. and 23 inches long. She's in the 90th percentile for weight and 75th for height. My poor baby had to get vaccinations today and her tongue clipped. She was tongue-tied. I didn't know that was actually a real thing. It was pretty traumatic for mom. It would've made Quinn go if he wasn't at the hospital with little Lila. Our pediatrician said that Ruby is looking great though. Hitting milestones and even doing a little bit more than most two-month-olds. That is just music to my ears especially since Lila is in the hospital
Sunday, October 20, 2013
Lila's potassium went up to 3.5 today! Which is great! that's right where they want it to be. Hopefully it will stay there. they will have to monitor it for a few days probably. When she came in it was in the 1.5 range which is life-threatening. They are also trying to see if they can find a medicine that this pseudomonas will react to that is not IV Administered. If they can find an oral one then we are closer to going home.
Feeling so overwhelmingly grateful for the wonderful family that has helped out. Quinn has been so amazing through this, sleeping over at the hospital and getting up to go to work. He's such a good daddy
I am missing my family all being together. Thank goodness for face time
My sweet angel
Saturday, October 19, 2013
Pseudomonas aeruginosa is a common bacterium that can cause disease in animals, including humans. It is found in soil, water,skin flora, and most man-made environments throughout the world. It thrives not only in normal atmospheres, but also in hypoxia atmospheres, and has, thus, colonized many natural and artificial environments. It uses a wide range of organic material for food; in animals, the versatility enables the organism to infect damaged tissues or those with reduced immunity. The symptoms of such infections are generalized inflammation and sepsis. If such colonizations occur in critical body organs, such as the lungs, the urinary tract, and kidneys, the results can be fatal.Because it thrives on most surfaces, this bacterium is also found on and in 1medical equipment, including catheters, causing cross-infections in hospitals and clinics. It is implicated in hot-tub rash. It is also able to decompose hydrocarbons and has been used to break down tarballs and oil from oil spills.2 3
This is a nasty bug that Lila has. They found it in her urine. I am very very scared.