Call Me Ruby Bon Jovi

SNOW!

We finally have some snow that's sticking to the ground! It started to snow while we were driving to church and really came down during the service. We emerged to a winter scene, complete with snow falling hard to quickly cover any tire marks or footprints. It's fun to finally feel like there's a payoff for all this cold weather. :)

We bundled the girls up when we got home and had some fun running and playing in the backyard. Ruby decided she liked snow once I showed her she could eat it, and Elizabeth was brave and decided to make her first snow angel! Dad did some asthetic touchups before I could take the picture, so what you're seeing has been given some attention with a broom. :) He WAS sweeping the sidewalk for us though, so I guess Ican't complain!

We also built a tiny snowman, difficult to do since it was so dry, but we managed and the girls had a great time.

Celebrating Life

A few years ago, we were asked to share our journey with Elizabeth for a video project. It was a powerful experience for both of us. I've attached the link to the video below.

Miracle Babies Video

A Good Day

We're home from the hospital and thankful for a very smooth, peaceful day. Elizabeth was a champ and came through the procedures beautifully. They found 3 more "cherry red spots" (spots that are at high risk of bleeding) and out of the 5 varices she has running down her esophagus, they sclarosed 3 of them. We'll need to go back for another endoscopy on March 2. We'll be on this schedule of looking every 4-6 weeks until they get the upper hand and the body creates different collateral veins that are more stable, or in the case that she has a major bleed and we need to evaluate other treatment options. (liver transplant) Given the options, we'll take the first.

 

Since they had to inject the varices, she was at higher risk of bleeding, so they kept her for observation until 4 this afternoon. I was able to drop Ruby off at our friend Kristin's home and she had a marvelous time playing with her friend Sophie. The afternoon in the hospital was absolutely peaceful (despite the fact that it was FREEZING outside (5 degrees when we were driving to the hospital!). Matt was able to return to work and Elizabeth watched all the Sesame Street and Signing Times she could get her hands on, ate right off the hospital menu (a first for her!!) and was her delightful self (as we were leaving, she turned to our nurse and said, "Thank you for Lunch!") We saw many of our nurse friends and they marveled at how big and smart Elizabeth has gotten over the last year.

 

When we got home, Matt had to run back to work, so I set the girls up on the couch with an animal video and set to making dinner. When the video stopped, Elizabeth hopped off the couch and announced, "I had a great day!" Amazingly, it's true. Despite the pain of getting the IV, the discomfort of not being able to eat or drink until 1pm, and the stress of another hospital visit, our Peanut was thankful for Dairy Queen ice cream, her favorite videos, a morning with her daddy and oatmeal for dinner. All of our prayers were answered and I for one am amazed at how kind God is to give us such grace for what could have been a really stressful day. (Thank you again Kristen and Sophia) 

 

These days, we are certainly learning a lot about what a "good day" really looks like.

 

 

Elizabeth's Proceedure Tomorrow

We'd appreciate your prayers for Elizabeth tomorrow as she is sedated for her endoscopy. We were also able to arrange to have her tubes placed in her ears while she's in the OR, so she'll be spared an additional sedation/intubation and hospital experience. We'll be taking Ruby with us and all need to be at the hospital at 7:00am. If all goes well, we should be home by late afternoon.

 

Would you pray...

~for Elizabeth to come through the proceedure with flying colors,

~that God would give the surgeons discernment and wisdom about how aggressive to be in sclarosing the varices.

~for no complications!

~for Ruby to be flexible

~Anything else that comes to mind!

 

We are so thankful for all your support and prayers. We'll let you know how things go!

 

Post-Christmas Update

We are so thankful that we got to spend almost two whole weeks with family in California. Elizabeth and Ruby got to see aunts and uncles and cousins galore and we enjoyed the few moments we had to put our feet up while the Grandparents loved on the girls. While the trip couldn't technically be called "restful", it did allow us to spend time with the Harms Family in advance of Matt's dad's surgery to remove the kidney cancer which had invited itself into his pancreas. Since Matt had to cancel his plans to attend his dad's first surgery during the Fall of 2007 due to Elizabeth's hospitalization, we were especially grateful to share these moments with the family this time around.  

 

Matt stayed in the Bay Area for the surgery while I took the girls to Clovis for a few days with my family.  Sadly, shortly after arriving in California, both girls got colds, and a week later Elizabeth's had turned into a bacterial infection in her ears. After flushing out her ears, a bunch of days of fevers, improving then worsening symptoms and consults with a pediatrician friend, we finally got antibiotics the day before we flew home. I, for one, am ready to take a trip that doesn't include any emergency trips to the doctor! The trip home was equally eventful, and needless to say, while we're so sad to say goodbye to family, we're glad to be home. 

 

The day before Dad's surgery, we finally were able to meet with the "feeding therapy guru" as I like to call her. Despite E's fevers and overall misery, we actually had a great session and she was able to get a clear picture of Elizabeth's abilities and limitations. We got some feedback and tools that should either prepare us for an intensive session later in the spring when we get called up from the waiting list, or will allow me to help Elizabeth make the progress she needs here at home without the intensive sessions. We're now waiting for E to get well so we can get this party started!

 

On Monday we'll meet with Elizabeth's ENT to discuss putting tubes in her ears to help us avoid more infections and hearing loss, and on Thursday she has another upper endoscopy to check the status of the varices we recently sclerosed. We've got a lot going on and would appreciate your prayers for our health. It's apparent that even a simple cold can throw Elizabeth off track for a while physically, create bigger problems in her little body and often results in a regression of the skills that were so hard earned.  But it's cold season and I can only quarantine us so much!

 

In Ruby news, she'll be 14 months old next week and is eager to do everything Elizabeth does. Her favorite words are, "YEAH!" in response to anything that sounds like a question, and "no-no"...which she says while holding a hair-clip or patting her head where the said hair clip should be...I guess we tell her not to take out her bows a lot.  Now that she's walking everywhere, she's eager to start running! She can't quite pick up her feet that fast, but her attempts are too cute. Oh, and when she hears any kind of music, she bobs her head, shakes her bum and throws her hands in the air....The girls keep me on my toes and thankful for naps and quiet times. :)