Love being their MuM...throw-up, poop and all

The day started out ever so lovely. A Badger brunch at my sister-in-law Whitney's house. Love seeing my nieces and nephews who I've missed dearly this last year. The food was amazing, as always. Above our dear Grandpa Badger.

Not so amazing coming back up....

Shortly after we left Whitney's Jonah told me twice that his tummy hurt, did I take him seriously? No, not til he started vomiting all over the place. I'll believe him next time. Luckily, I had one of LuLu's blankies handy which took the brunt of it but it was still what I'll call Mothers Day Disaster of 2010. We pulled over to handle the situation then flipped a U and headed straight home cancelling the rest of the days celebrations.

Casualties: new carseat, my car interior, his clothes, Londons blankie, the pleasent smell that use to reside in my vehicle. This is when leather seats would come in handy.

Diet Coke--the only liquid in the car.

Parading while we (mostly James) cleaned up the aftermath.

Good thing we always travel with Clorox wipes which served 2 purposes- the wipes for cleaning up and the empty container for a barf bucket for the drive home.

We were almost home when Jonah warned me he needed to poop. I begged him to wait a few more blocks, "squeeze your cheeks" I said, we were almost home. "Too late" was his reply. We hurried and pulled over to a Blockbuster to borrow their bathroom and finish the job right. We returned to the car with him wrapped in paper towels- for modesty of course. Poor child, we all laughed with him/at him. So glad I had my camerra today.

The ride home....nothing but a paper towell and a seat belt to cover up with. So glad we weren't pulled over for any reason. Wouldn't have wanted to explain to the officer why we have a nakey- without clothes or a carseat.

Of course it was a Happy Mothers day because I was with my family. I am lucky to have 2 wonderful children. This day didn't pass without much thinking of our donor Ashley and her SWEET Mum and family. Their first Mothers Day not together. Camie without her firstborn by her side.

A day most of us celebrate and reflect on the joys of being a Mother, many suffer and feel their deepest sorrow about not having been able to have children of their own, feel the void of a child that has passed away or miss their own MuM's that are no longer with them. I am LUCKY our donor family decided to be a donor family and that this Mothers Day I wasn't without my beautiful, perfect, tough-as-nails London.

Love you MoM, Love you Cindy, Love you Grandmas of mine, Love you CAMIE, Love you Laura, Carol, Rob, April, Anna, MJ and all the other Mommas that treated me like their own growing up. Love you Jonah, Love you LuLu-thank you for making me a MOM.

Must mention another highlight of this day...seeing a cute OLD man riding a bike and smoking a pipe. Don't see that everyday. Laughs.

Later Gator

AND, WERE HOME. (sweet home) Lu was so happy to drive the car down the halls into the elevator and out the door. She'd been waiting for days to bust out of her room for this joy ride. Welcome home LuLu, welcome back Jonah. Thank you Grandma and Grandpa for taking him the last few days.

xoxo

lizzie

alpha-1, liver mum

ps Jones get better, Mum and Lu don't want to go back to the hospital anytime soon.

Chaser Man

My friend's little boy was recently diagnosed with leukemia. His name is Chase and he's incredible as are ALL kiddos that deal with childhood illness. Come enjoy a wonderful carnival (promise there will be no "carnies") and support a great, big wonderful cause.

Our morale was lifted during our toughest times with London by the support of friends, family and strangers alike. Please show this family the love.

God speed little man.

xoxo
lizzie
alpha 1, liver mum

Verdict is in...

We were both very smelly this morning so Lu got a good bath and I got to go home and shower thanks to Aunt Mary Jane. I do not enjoy showering in public bathrooms, I'd rather be dirty til I can make it home.

You bet I'll blackmail my daughter with this picture one day. It made me laugh, hope it makes you too...

Ahh, that's more like it. Enjoying room service-a perk to being isolated to our room. Hospital food gets a bad rap, but it's actually really good- as long as you aren't eating it more than a few days straight, then it turns bad fast.

Poo for dinner or so it looks. It was actually dessert. Chocolate dipped Oreos- a favorite hospital splurge.

A visit from Jonah is always good medicine. Thanks to Nana, PaPa, cousin Jen, Miss Joy and Miss Julie for all your help with him. Jonah also loves self declared take-your-son-to-work-days like today.


RHINO VIRUS

..sounds really scary, but in all actuality it's a strain of the common cold. Not a big deal for most. For LuLers it is. Hence my paranoia about hand washing, shoe removing, Clorox wiping, limited visitors, aversion to public places etc. It's my life to keep her healthy we aren't ever "out of the woods."

"Rhino viruses can cause clinically significant, chronic lower respiratory tract infections in immunosuppressed patients. Respiratory syncytial virus, influenza viruses, and para influenza viruses have all been reported to cause serious lower respiratory tract infections in immunocompromised host."

We are happy it isn't anything worse but also realize that trips to the ER for a cold/fever is what is in store for us, forever. I'm not complaining- we are grateful she's here with us and we have access to the best medicine whenever she needs it. These few day stints are good reminders of just how lucky we are and how important our little family is to us. Life is so fragile and London is our constant reminder of this.

Get well & keep well my Little Lu.

xoxo,
Lizzie

Alpha 1, liver Mum

The Best medicine + Gods Hand = Big Fat Miracles

Harmonee is doing AMAZING. see http://www.harmoneesliver.blogspot.com/2010/05/blue-eyes.html for her Mum's update today. WOW is all I can say. They will start accepting offers in the next few days. Thank you to every ones love and support for her. I've had emails from people offering to undergo live testing for her...wondering if there is anything they can do for this family. Thanks blog friends! Ya'll are some good people.

This is about 2 am last night, still in the ER. We got into our room around 3 and to bed by 4. She had just been through the ringer when this was taken. She was cathed, nose/throat suction/IV/labs which didn't go so well and chest xrays in a 30 minute period on top of being seriously exhausted- that's gotta hurt. James always gets a little PTS after seeing and holding London down like we have to and witness her suffering.

She's SO forgiving.

Last night we ruled out rejection issues, her liver numbers are fabulous. Bacterial infections were also ruled out...so we are still waiting labs trying to figure out what is causing fevers that persisted today as well. Doctors suspect it's something viral,(CMV, EBV) with her weak immune system fighting anything off is difficult. She's been treated with antivirals and antibiotics since last night and receiving fluids to help combat the fever. She has been in good spirits all day which is promising. We will stay until they figure out what's buggin' my girl. Hopefully this doesn't turn into more than a few days.

We are so grateful for London and her fighting spirit. She was born with a great purpose in her life, so much good has come out of being born ill. She has taught James and I lessons we could never have learned, changed us for the better. I'm excited to see her fulfill her God given potential. I know she will continue to change the world we live in.

Get well soon Lu.

xoxo

lizzie

alpha-1, liver mum

Wee Harmonee & Little LuLu under the same roof

Liver MuM Love. (last night)

On the phone tonight with one of her GI Docs...no messin' around post transplant. And per Dr. Jackson...we're off to the ER. A quick shower, packing of bags, dealings with dogs, sending Jones to NaNa's and we are ready to go. I don't ER-alone.

Waiting...waiting and more waiting. Just how it goes.

Typical.

I am so happy to say that Wee Harmonee has been stable today. (see her blog for yesterdays update & more pictures I posted for her Mum) She has also had negative cultures for infections today. HOORAY! If they can get 3 straight days of negative results they will accept an offer for a liver when the right one comes in. This brings HOPE for HARM and her family.

In other breaking news, James and I are sitting in the ER with Little LuLu as she has a high fever (103) and respitory distress (72 br/p/m). She had a fever last night too, but broke and we'd hoped it would be nothing. This could mean an infection or be signs of rejection. If it is rejection it's caught early and would most likely be treated with an increase in her anti rejection drugs. If it's an infection, will be treated with antibiotics...so hopefully this wont be a big deal or a long stay. She is such a tough little love, we're lucky she's ours.

They will start an IV soon, draw labs, treat her with a broadspectrum antibiotic, chest xray, nose suction, get admitted to her suite and figure out what is wrong. Sorry for not calling Mum, but didn't want to worry you til morning.

This still feels like our home-away-from-home.

xoxo

lizzie

alpha-1, liver mum

Wee Harmonee

This love isn't thriving as we all hoped she would. Her condition has continued to diminish over this last week in the PICU. She's been in multiple organ failure. Besides her liver and kidneys her heart and lungs have also suffered. Harm has been on dialysis for a few days. She survived an emergency surgery last night in hopes it would send her in the right direction. She is very sick. The night was steady but this morning she couldn't keep her blood pressure up. Mum and Dad would love a miracle...but are also preparing for the worst with wee Harmonee.

Today her Mum and Dad signed a DNR as well as papers for her to be an organ donor of any viable organs. They hope her heart, lungs and pancreas will be healthy enough to give to another. If we lose one of our "liver kids" to Biliary Atresia, these parents are so loving & willing to give a "heart kid", "lung kid", "pancreas kid"......another shot at life--the same shot London got, the same one we're hoping Harmonee will have. Organ donation is giving them some peace right now.

Harmonee has been in the same room our donor Ashley was in. I pray Ashley will be close by today. I pray for miracles, please do to.

xoxo

lizzie

alpha1, liver mum