Thursday, April 29, 2010

Our little Stair Master

A little over three months ago she couldn't lay on her bloated belly. Then she got a new liver, that liver was like a SUPER POWER. 2 weeks after transplant she was on her haunches. Days later crawling. Weeks later walking, now-sprinting and going up and down our stairs like it's no ones business. What a miracle. Thank-you Ashley and all donors who have given life to another. But we need many more. Our liver friend Harmonee is holding on tight to dear life in the PICU...waiting for a liver. I hope she gets her SUPER LIVER POWERS soon too. We love you Harm.
Harmonee has had multiple blood transfusions, receiving platelets and plasma to help her body hold on and fight hard. All that are able to donate blood, please do. You never know when you or someone you love may need it. Contact ARUP (local) or the Red Cross for an appointment, then consider yourself a HERO because it will save a life.

Tuesday, April 27, 2010

Tube time....

Cousin Jeff, sitting back, sipping a diet root beer and about to have some Sunday afternoon entertainment Badger style....

Don't worry, I'm a pro...we've probably done this to LuLu over a hundred times. :(

Quick and dirty....

Jeff trying to restrain James as he started to fight it....

I had it almost all the way down...

...and he yanked it out.

Maybe you had to be there...but it was one of the funniest things I've seen in a while.

He was gagging and all sorts of about to throw up..., thinking to myself that my tough husband is kind of a baby. LuLu does this all the time.

I'm surprised I didn't reflexively get chucked off the island.

Much coughing to follow, a continued burning, itchy nose and throat....

He's a champ for trying.

And I'm up...thought I could handle it. I've birthed 2 babies naturally at home. Just kidding, totally drugged and in the hospital but still I birthed 2 babies. My foot was pounding the counter trying to endure the momentary torture and secretly hoping I could do something James couldn't.

No such luck. Child birth was easier than this.

Poser. This is just taped to his face and barely in his nose. Neither of us could hack it...which made it even harder knowing we had to put it back down LuLu's nose immediately as she will not consume the amount of fluid/calories she needs to keep her kidneys flushed and add pounds to her tiny frame. But that's being a parent I guess, doing what you know is best for your child even when it's hard to do.

Wrapped like a burrito, Dad on top, head pinned with MuM's knees makes for a defenseless little baby. We're quick, she's tough and forgiving. It was a good few days to see her without it but it's not time to flush it down the toilet yet. Anyone up for the tube challenge??

Save Lives

1. Register with your State's organ & tissue donor registry. To learn how:
2. Speak with your family, friends and colleagues about your decision to be a donor.
3. Encourage your workplace ,church, schools, neighborhood organizations, and city to adopt donation as a mission.
4. Encourage your elected officials to support donation legislation.
5. Speak at your local High School, College or University. Ask them to participate in the National Donation Campus Challenge. www.organdonor/
6. Participate in events sponsored by your local organ procurement organization.
ONE organ donor can SAVE the lives of up to 8 people
ONE tissue donor can SAVE / ENHANCE the lives of up to 50 people. Help our returning solders from Iraq and Afghanistan who require tissue for reconstructive surgery

(from YES UTAH website)

Thursday, April 22, 2010

Red Cross

I've been privileged to speak at a few Red Cross functions to share LuLu's story. I love promoting organ donation as you know if you read this blog but it's important to remember we cant have successful, life saving transplants without donor blood. LuLu received 9 units of blood during and after surgery. She needed platelets for days. I am so grateful to blood donors, whether or not their blood went to my Lu, in theory it's all the same.

I will continue to do my part to pay it forward and hope that others waiting for their kidney, liver, heart, pancreas, lungs etc...won't wait as long or die trying. I had a rad (you know who you are) guy approach me after I spoke about LuLu and Ashley and said he was going home that day to sign up to be an organ donor. Mission accomplished.

I've made it clear to my James and declare it now to the world that if I can be a donor when my life comes to an end I want nothing left of me. Take my eyes, my face (you know they do face transplants, right?) every viable organ, every bit of tissue and skin on my body. Cremate me or have a closed casket with the coffin nailed shut, I don't care which.

I laugh now, because I've asked my friends who've done my hair for years to make sure it looks good when I die and Kathryn to be sure my makeup looks good when people are walking through and giving their condolences. Please don't leave it to the old lady working at the mortuary to style me up for my final hoorah.... Very vain, I know. Let's just say I've come a long way. Take it all.

****added on by Auntie Julia below*****
This blog post made me think of a recent road trip Lizzie and I took with our sons. We were in the car for 12 hours, and much of that time was spent reflecting on LuLu's diagnosis, treatment, and subsequent transplant. Lizzie is so passionate about organ donation. We started talking about reasons why someone wouldn't want to be an organ donor, and couldn't think of too many. Lizzie got all fired up and said, "When I die, I want them to take it all. My organs, my bones, my face, even the skin off my body. Then, I want an open casket funeral..." momentarily horrified and a little nauseous thinking about it , I looked over at Lizzie like she was insane. It took her a second for her mind to catch up to her words. We busted out laughing until we cried as we talked about the horror of loved ones, especially little kids viewing her open casket without anything left of her. Closed casket indeed!!!

Wednesday, April 21, 2010

From LuLu's Uncle D

A Poem to LuLu

I cannot remember ever praying a more beautiful miracle call!

GOD has made you perfect, hair, frame, fingers, liver and all.

There could never be a more beautiful you our sweet little LuLu.

Come dancing and singing and playing as the answer to our prayer,

with that hair that goes everywhere and eyes that capture our stare.

There could never be a more beautiful you our sweet little LuLu.

Light our faith with that cheeky smiling face of pure innocence and grace

while we praise the Name of JESUS for healing you in your place.

There could never be a more beautiful you our sweet little LuLu.

We see our LORD in your laughter and your fun

and we are reminded that to HIM we must always run.

There could never be a more beautiful you our sweet little LuLu.

We love GOD more for your new liver that came in the final hour

and we thank HIM always for such awesome healing power.

There could never be a more beautiful you our sweet little LuLu.

You are just a miracle of hope and joy in who you are and all you do.

Oh what a blessing you are through and through.

There could never be a more beautiful you our sweet little LuLu.

I cannot remember ever praying a more beautiful miracle call!

I’ve never seen a more beautiful miracle at all.

There could never be a more beautiful you, our sweet little LuLu

Tuesday, April 20, 2010

Tubeless and Good at Drugs

Lulers gets her tube out, we put it back. It is a regular occurrence and a two person job. I was alone yesterday morning when she woke up sans tube, James wouldn't be home til late evening... so I gave her meds orally with a little trickery (syringe with water) in between syringes of drugs. She loves water but shouldn't have it much because of the empty calories. Long story short she's doing great with her medications by mouth so maybe we will drop the hose sooner than later. I was thinking we'd have another year with it....

The only other reason for keeping it is to get enough calories in her per day which I track closely. Whatever she wouldn't take by mouth we'd drop down her tube. she doesn't want to drink anywhere near the amount of ounces she should but we are working hard and being creative. Chocolate milk, strawberry milk, vanilla etc. etc.

It will be so nice for her not to have a tube up her nose and down her throat, dangling from her body. It will be nice not to have to plaster her cheek with tape. It is nice to see her without it only if it is temporary for now. James wants me to put one down his nose...just to know how it feels. Pictures to follow.
Note to future LuLu: tubeless is good, topless is bad. Anti-rejection drugs are good, the rest are bad. I love you more than life London.
alpha-1, liver mum

Thursday, April 15, 2010

Run Alec, Run.

Alec and Megan

I think anyone who completes a marathon is quite amazing. That is a lotta miles to run, a huge feat, crazy training, much motivation and intense discipline. I'm tired just thinking about it. For some running comes more naturally than for others, some people actually LIKE it. (imagine that?!) For most running is much more difficult. Many endure more, have to try harder, have something to overcome but still get to the finish line. For THIS guy getting to the starting line was spurred by a long road he was forced to travel. Meet Alec.

He had a liver transplant less than a year ago and he is running the Salt Lake Marathon this weekend. He wasn't a "runner" before, but he's a "runner" now and loves it. He wanted to mark his first year post transplant with something huge--and he is! I'm sure he'll think of and praise his donor every step of 26.21875 mile way. Alec may be running on our Ragnar Relay Donate Life Team.

Good Luck Alec, show Salt Lake what transplantees can do!!



alpha-1, liver mum

Monday, April 12, 2010

Peace, Harmonee & Perspective

"Meet little Miss Harmonee"

Today is Monday which equates to CLINIC at Primary Children's. With our recent move our commute has been cut in half which is a nice perk for me being a Liver-Mum, Hospital-Mom, Medical-Mom...whatever you choose to call whatever it is I have been this last year. Her appointment was great-all is well with London. LuLu entertained/IMPRESSED everyone with her new skills, squawking, talking & walking. She worked the office between exams in her diaper, purple Mukluks (boots) and signature over sized bow. Everyone in that office knows LuLu and LuLu knows everyone. It feels like we are surrounded by our friends and family when we are there. We love Primarys and everyone in it. We are lucky, we are grateful and we are feeling more at PEACE every day.

Lu is well enough to start being seen every other Monday as well as labs every other week too. We will start going back into the real world a little bit as RSV and all the other yucky stuff is winding down. Wow, are we really here already? I'm eager to have play dates with friends. Lateovers with cousins sounds like a dream. I'm excited to go to the Zoo and see Batty with my kids (Ashley, our donors favorite @ Hogal Zoo). I'm looking forward to family functions and going to church again. We've been isolated for quite sometime but it's been in the name of LuLu, which makes it all worth it.

As we near the end (well sort of, it never really ends though) of our time in Liverland others are just starting, some are in the middle and one-by-one crossing the finish line with a life saving transplant. It would be ignorant of me not to remember that many don't make it. For some, time runs out waiting. Imagine that-watching your child die, your Mum die, your best friend or neighbor because there aren't enough organs available. P.L.E.A.S.E. consider being a donor if you are not. Please talk with your friends and family about it and your wishes. Dying someones hero, being someones Savior- what could be better than that? I'm grateful we didn't suffer the pain of losing a child.

Meet Lu's friend Miss HARMONEE, she is 1 of the many waiting. She is from Brigham City, Utah and has had quite the go lately. Back-and-forth, back-and-forth, long hospital stays and a lot of complications. I have anxiety just thinking about it. MuM Farrah is waiting for a call telling her they have a liver for her 6 month old baby who's has Biliary Atresia. This will be her second life saving surgery. Neither Mum nor Dad qualifies as a good living donor match for Harmonee. PS Dad is in the military and will most likely be deployed when she has her transplant. I can't even imagine for both of them how difficult this must be.
I met her about an hour before Harmonee's first surgery that took place the day after she was diagnosed with BA, talk about a whirlwind for them. During our admission in December I couldn't hold myself back from entering an obviously scared, heartbroken couples room whose Doctors name on the door was BOOK (you know--the Queen) I wondered...does that baby have Alpha-1 too? A beautiful friendship was instantly forged as it is with all Liver Mums. I had to let her know she wasn't alone, theoretically and physically. I was right down the hall in the middle of a month stay at Hotel Primarys. They needed to know there are other people dealing with similar issues and we're all here to help. I felt absolutely alone after London's diagnosis until I met some Liver Mums myself.
What great PERSPECTIVE we've been able to gain because of London. How lucky our little family has been to travel on this road. Sick child or not, and hopefully NOT- Perspective in all our lives is what we need to get through it happily. Figure out whats MOST important to you and yours, then focus. We have and it helps.


Alpha-1, Liver Mum

Wednesday, April 7, 2010

A day in the life of Lus and Lyds

Last bath with Bro-V. Will not miss our non-fun baths because of it. Soon LuLu and Jones can splash in the tub together, as little brothers and sisters should. It will be a momentous occassion.

Last picture of Lu with this flashy accessory. Here Daddy is saying goodbye for what we hope will be her last surgery EVER. Note to LuLu: this means no tonsils out, no horrible accidents-let's not even do stiches, no liver related re-do's and definitely never any elective surgery. Your MuM has worried enough about you for a few lifetimes.

After London was "out like a light" LITERALLY she was on one second and out the next, we went up to visit Lydia's family and bring them some well deserved comfort food in the waiting room. Even though we were meeting her Daddy Brian and her Grandparents for the first time, it felt like seeing family. They had to say two very tough see-ya-in-a-whiles today, here we found them shortly after Mum Jeanene's surgery began.... Little Lyds was tired, hungry and obviously uncomfortable-she was in great need of a new liver. :( She was on deck for a few hours- hangin' tough in the waiting room where the waiting would soon begin for her as well.

When we were paged overhead we rushed down to find a LIVELY Lu, chucking Cheerios, sipping juice, keeping several nurses entertained and busy. She was not one bit groggy, it was like she'd just slept all Winter and was ready for Spring. In actuality it was no more than an hour later. It always feels good to have her back in my arms where she fits so well. As soon as she was done being observed and vitals were good we took her up to say ta-ta to Lyds and let her family see what they can look forward to in a couple of months for Lydia.

I am delighed to say this family has a spectacular support system. Jeanene is one of 10 kids. Need I say more?

Lu nearly dove out of her wheelchair to get to Lydia...Sweet little liver sisters, they are. My mom joked that all these little girls should be college roommates one day. Never know.... Other MuM's: Barnums (my maiden)/Badgers are Utes through and through FYI

Dear Mr. White Bear,
Please make my little friend Lyds happy, if only for a moment today.
Sincerely...yours warmest regards,
London Kate Badger

Mission Accomplished.

All is well with MuM and Babe...See for her Daddy's updates of today. YOU ARE A ROCKSTAR BRIAN!!!!!!!


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