My Love

LuLu loves our porch and being outside. I always feel like we are making up for lost time. We enjoy side walk chalk, blowing bubbles, eating and ant watching on our porch. Her toes curl under and she's totally creeped out by the ants but she loves the thrill of finding them. She's not afraid of needles or large dogs. Go figure. We feel totally, utterly lucky to live in such a great neighborhood filled with friends we've grown to love over the last year. I don't think I could picture a better place for our kids to grow up. I am extremely grateful. LuLu has been in great health since our last hospitalization in March and we plan to keep it that way! Fingers crossed, knock on wood, Pray to God. I can't help but panic even when she gets a slight cough or runny nose that it will turn into so much more...but that's the life of a transplant kid. I have a feeling it will be a fabulous summer. :)

On her throne...

Prayers for little Livvy, please

http://wintersfamily5.blogspot.com/

Little Livvy has been struggling and suffering for a long time now. We use to both bunk at Hotel Primarys together but as Lulu's stays have decreased in frequency- Livvy's have picked up, ALOT.

Answers have been hard to find, the right kind of Doc- unknown. Please pray for miracles to happen for this great family. Olivia has a stong Momma, my heart breaks for her knowing how hard it is to see your baby suffer.

I know miracles happen, we have seen them at Primarys time and again.

xoxo

My Mothers Day Gift

While at my Mom's house on Mother's Day we came across this picture of London. It hurts to look at. Her tummy was so swollen and uncomfortable from hypertension and would later have to be drained with a needle on several occassions. She wouldn't eat anything orally when it was this big which would make for a lot of super-foods going down her tube-which she would inevitably throw up. She use to throw up all day long. The worst was finding her asleep in it during the night or morning unknown to us.

Her arm is all bandaged up like it was for months and months because of her PICC line which would give her the nutrients directly into her blood stream to keep her nourished since she wasn't keeping her food down, nor absorbing food properly because of the damage already caused to her liver. We could never get that arm wet, which made baths a little complicated and not so much fun. After her transplant it was removed and a central line was put in which is essentially the same thing but closer to her heart, again making bath time (sponge time) hard and potentially dangerous to her. I'll never forget the first time I was able to shower with her after she had no more lines- it was one of the greatest, most special moments of my life. I'll never forget her little body clinging to me like a baby monkey, enjoying being soaked and sprayed. I cried, she laughed.

Seeing this picture and being reminded of what life use to be like, something I easily forget- felt like the best gift I could have been given on Mothers Day. I was made to remember that every day with her (and Jones) is the greatest blessing on Earth.

xoxo

To GO or not to Go, that was the question

We had labs and clinic on March 29th and everything looked great. SO great that we were able to discontinue 2 of LuLu's meds. YAY. She is down to 1. I can't believe it-- a year ago we were giving her dozens. She takes Prograf (anti-rejection drug) twice a day at 9 and 9 and will forever. With Prograf comes many side effects and I've just recently had the courage to dive in and study them all out in greater detail and understanding.

I know, it took me a year but I couldn't handle it emotionally until now. There is no alternative to taking it for it's the only way to prevent her from rejecting her liver and dying. So we will deal with whatever comes-as it comes. The greatest worries for me are her (much) increased risk for Melanoma and Lymphatic Cancers. She will probably never conceive a child for the side effects on a fetus are devastating. I learned this at a peak in my own grieving about not getting pregnant again myself. We have chosen not to risk this disease on another child. I am so glad I loved both pregnancies and both deliveries. Labor and delivery is the best thing in the world.

I wish I had known LuLu would be my last, so I could say goodbye to that then, know it was over, the last time I'd take a brand new baby home from the hospital. It's like not being able to say goodbye to someone you love and will never see again. I stopped feeling sad for myself for I've experienced this miracle twice and just felt sorry for my little baby.

I know though that adoption can and will be a wonderful experience for her if she chooses to do so. It will be it's own unique, special journey and she will be a spectacular little mother. (in like 30 years) Babies will be sent to her from God through a different medium but the ones that are suppose to be hers to love. Adoption has been on our minds a lot lately. Even before we got married James and I talked about it being something we'd love to do and we hope we can. Especially with our recent trips to Haiti the need for loving homes for these amazing children is so great. We hope to be so lucky.

After LuLu's fabulous clinic appointment on that Tuesday the 29th she became really ill just hours later. Tuesday, Wednesday, Thursday...starting to get really worried for her and my need to cancel or pursue my trip to Haiti on the following Sunday. We went for labs Friday to check the little lady out and she got really ill in the main lobby of the hospital. We were sent to the ER for testing and to start receiving fluids and meds. I began to say goodbye to Haiti... London was admitted to the hospital and made a really quick turn around. My hopes to go began to flicker again and allowed myself til Saturday to see how she was doing before deciding one way or the other. Tests came back positive for Rotovirus (yes, something she was immunized for) but having already been sick for so many days figured she was at the tail end of it. Her improvement overnight was basically a full recovery and as soon as we were released that afternoon I began to pack and looked forward to an experience of a lifetime.

Thankfully London did so well while we were gone and I had no doubts about ALL the capable hands her and Jonah were left in. And Haiti was the best thing that could have happened to me.

A weekend away-the real kind

Welcome normalcy. I have missed you for two whole years now. Splashing at the pool with my baby couldn't be sweeter. A little mini vacation to our family condo in St. George has been a long time coming. We needed this weekend. We loved this weekend. We will have many more weekends LIKE this weekend. We were in the greatest of company with dear friends joining us. London was the definition of happiness while in the pool and all I am hearing from her lately is "want to go swimming NOW mama" "want to go swimming NOW mama" "lets go for a trip mama" We will be going swimming MORE LuLu, but not always NOW.

The truest kind of love. James and LuLu. He loves his girl.

He loves this girl too (me) and loved me even more after I learned to ride me a dirt bike. He's gotten really good at this sport the last few years and has been wanting to pull me in to this addiction of his. He did and I love it too. No, I didn't ride in a tank top. I had every piece of protective gear known to man. Thank goodness...or I wouldn't have walked away from this weekend in one piece. Think I know what James will be getting me for my 30th, a little, girly sized dirt bike wrapped up in a hot pink bow to match my riding pants...hint. hint. Thanks for the loaner Chantell.

Sweeties bathing after swimming. This is our little friend Tori. We love her. She is the worlds best 2 year old (no offense Lu). Mind boggling really...chalking her up to really great parents. I took pointers this weekend- believe me.

Happy wedding to Bryce and his beautiful bride Cherise (the real reason we headed south) and cheers to good friends (Tellie, Scott, Jenna and Joe, Kath and Adam), good food and warm weather.

I was so happy to come home to melted snow and growing tulips. Mother Nature knows I need Spring. No more snow. Please. Begging, actually.

Hoping all your weekends were swell too...

xoxo lizzie

Weekend Getaway...

...JUST NOT WHERE WE WANTED IT TO BE

LuLu had been sick for about a week, throwing up and a bad cold. We took her to the doctor and was assured it was just a cold. But several more days of her feeling miserable and then spiking a fever it was off to the ER Friday night. Well, we had to check in @ the ER but were able to bypass it and go straight to the penthouse of the hospital. 4th floor ICS (Immuno Compromised Services) a very exclusive group of little people-cancer, HIV/AIDS and transplant kids. After a few hours of MISERY-- labs, urinalysis, chest xrays, and a DEEP nose suction for a VRP (viral respitory panel) which always leaves her with a bloody nose.

RESULTS: a double ear infection and RSV (Respiratory Syncytial Virus) which is very scary for little ones like Lu.

Checkin the view...

She received maintence fluids since she wasn't keeping anything down and IV antibiotics for her ears and anything else that could have been lurking in her body. I dreaded the day our mobile, walking, climbing the walls London would have to be attached to a tube, pole and confined to a small room. The days came and went and we survived.

I spent the first night in London's crib with her. She wanted me there and I wanted to be as close to her as I could be. She was inconsolible and after a few hours, so was I--for many reasons that night laying next to her. But her pain and confusion were enough to justify my tears and heartache. We cried ourselves to sleep together until a few hours later when her IV tubing was wrapped around her neck, which again made me glad I was laying right next to her. Oxygen & many hourly vitals later the night finally ended and a new and better day began.

We were getting creative trying to entertain her...whatever makes her happy. She really wanted to go swimming- this is what we came up with and it was good enough for her.

>>>drinking like a kitty cat...however we can get her fluid intake up...

We were able to sneak away while my mom stayed with LuLu to spend time with Jones. We took him to a movie about space (which he's been really into lately) at Clark Planetarium then enjoyed the exhibits. Here's Jones on the Moon... We always say "love you to the moon and back"

Then he hopped over to Mars...the other night Jonah asked James if he knew how much he loved him? James asked how much and Jones said "to Uranus and back, do you know where Uranus is Dad?" He is a funny, smart, quick, witty 4 year old. That comment will go down in our books.

There is a learning curve with chopsticks...

self portraits with my little man. It's important for the "well" child to get mom and dads love and attention while London is sick in the hospital. He was having so much fun staying with his Aunt Maryjane that he didn't really even want to come with us-- but I think he tolerated it ;). He was really glad to return to her after for their second sleep over.

Back to the hospital where Lu was bathing Dora, purple guy and her bouncy ball. She would ask for her Bubby a lot and go to her door knocking for him and wanting to call him on my phone. She loves her brother, always misses him when she is in the hospital.

The most gracious thank you to Aunt Allie for rushing some Dora DVDs to LuLu which she watched around the clock. Dora's voice now makes me want to stab pencils in my ears but I am grateful she entertains London in her time of great need. Thank you Mom for staying with Lu so James and I could be with Jones. Thank you Aunt MJ for taking the best care of Jonah, Thank you James for being the best Dad ever to our two kids. He slept the second night with her while I got to sleep in my own bed. And last but not least thanks to the GI team and to a loving Heavenly Father that is always mindful of London and our little family. We are happily recovering at home now and will be back to the hospital Wednesday for labs.

Not a shabby view from our hospital room.

xoxo

Lizzie

liver mum

How do you get your husband to bathe the dogs?

....throw them in the shower while he's in there with your kids.

Love it when my kids are clean, dogs are fluffy and husband's not stinky.

PS we don't think we have enough blogs between my liver blog and our family blog, ;) ;) so my mom started another one about one of the things my Daddy does best--building.

visit www.badgerconstruction.blogspot.com

It's a work in progress and will be keeping my Mum busy getting it all up-to-date.