Happy 1st Birthday Ruby!

From the moment of your birth you have been a gift of grace to our family. You are full of life and laughter and snuggles and spark. We are so glad God chose to share you with us! We love you little Ruby Christine.
Love,
Mommy, Daddy
& Elizabeth Joy

Successful Endoscopy

We're home and Elizabeth has shaken off the anesthesia and just ate a good lunch of her favorite oatmeal. We're so pleased that the endoscopy went smoothly. Here are the facts:

 

*Dr. Sheppard, (not McDreamy) ;) who has been our liver surgeon all along happened to be visiting from Australia, so he was available for her procedure today. That meant he was able to compare the condition of the varices from first-hand experience.

*Based on what he saw, He decided to sclerose (cauterize) 2 collateral veins that had "cherry red spots" indicating a high risk of an impending bleed.

*Elizabeth didn't have any problem with the anesthesia and quickly started eating and drinking after she woke up

*Because of our history with Dr. Sheppard, he was able to talk through her current labs and answer ALL of our concerns about her current labs and strange behavior. He gave us a clear explanation for her high ammonia levels (her portal hypertension is to blame, NOT hepatic encephalopathy) and was able to put us at ease about the recurrence of her funny symptoms and the long term outcomes. The bottom line is, we can expect her ammonia to spike every time she gets even minimally sick, and the increase in her ammonia will cause her to act drunk, lethargic and off-balance, but it should go away within hours. That's good news! He sat and talked with us for over an hour and we are so thankful for all of his input from years of experience.

*Through it all, we've once again seen Elizabeth's courage and bravery in the face of pain and fear. She is so strong, and such an overcomer. I want to be like her when I grow up!

 

Thanks for your prayers and encouraging emails. We're home and happy and have lots to be thankful for.

Endoscopy tomorrow

We're taking Elizabeth in for a regularly scheduled endoscopy tomorrow
morning to check out her varices. (to review, last winter they were the
most severe, Grade 4, then this summer they'd improved to Grade 3) We
had an ultrasound on Tuesday that went off without a hitch. Everything
appears to be stable and when we had to get a blood draw afterward,

she was a champ. Even though she handn't eaten in 16 hours, she was calm

and didn't cry for one single minute! She actually told the
phlebotomist which arm to stick, counted down and then asked for a
bandaid and a sucker...next she'll want a bike and a kitty! :)
Afterwards, we went to the hospital cafeteria for an "ice cream with
Daddy date." It's our new ritual and I believe it kept her from
totally freaking out the whole morning...she was so focused on the
prize.

Unfortunately, she's been acting a little strange. That, coupled with
some abnormal lab results, has us concerned. We're in conference with
the on-call Gastrointerologist and really need wisdom and discernment
about what to do. We've almost made it through the entire fall without
a hospitalization...only a few weeks left. We'd really like to stay
home with a healthy Elizabeth tonight.

We'll keep you posted.

Here's a photo of Elizabeth celebrating Dora the Explorer's 3rd Birthday.

"Squirrel-Proof"

First Steps

Well, it's actually steps 2 & 3, but we'll have a pedestrian before too long!