Blog Archive

Thursday, March 27, 2008

Ruby turns 4 months old

In honor of Ruby's 4 month birthday, here's a little quiz. Some have accused me of doctoring the photos. I'll let you guess for yourself...who's who?

Friday, March 21, 2008

Elizabeth Update

Yesterday, on the first day of spring, we celebrated with a trip to the park. The park is where, as Matt puts it, "The borders of Holland and Italy get really close to one another." (we know of course the two can't be neighbors...but if you're familiar with our trip to Holland metaphor then you know where I'm going with this (if not, you'll find a link to the poem to the right)) At the park, Elizabeth is so full of life and joy and delight. She plays on the swing, navigates the wood-chip terrain and climbs around the play structure with excitement and a distinct lack of fear. She is absolutely thrilled to be at the park. When we're at the park, it's easy to forget about her clot, her g-tube feeds, her muscle weakness and fears about her future. I love going to the park..Peeking over the fence at Italy, enjoying some good pasta and yummy wine, (Okay, Matt enjoys the wine, but you get my drift)...Feeling normal.
And while so many things are going well with Elizabeth--she's growing, she's getting stronger and more steady on her feet, she's learning signs and songs and parroting everything we say, she's throwing up only infrequently now, and since her hospitalization in late February, has remained "bug free"--I was reminded during a recent conversation with Matt, the future isn't perfectly clear for Elizabeth.
Rather than spell out all the possible challenges she faces, we'll just give you the bottom line.
Elizabeth needs a major miracle.
She can't live for long without healthy collaterals (blood vessels) to divert blood flow around her clot. She doesn't seem like a good candidate for a shunt procedure, and thus we're looking at a transplant. I'd been living in a bit of "la la land", comforting myself that if nothing got worse we might avoid a transplant. But the reality is, if things don't change, a liver transplant IS the outcome. If she gets worse, we just move things up. And while a transplant is a good way to save her life, it doesn't give her the life we want for her. A transplant means she'd have to live on immunosuppressants to keep her body from rejecting the liver. (Think HIV treatment) Immunosuppressants would mean she'd be much more at risk for little bugs causing major problems (as if we haven't seen enough of that with her already!) Any fever would mean a hospital admission for IV antibiotics...
So we need a miracle. The clot is completely scarred over, there's no chance of it breaking up...unless God plows through it. We have an endoscopy scheduled for April 21, so we'll get to take a look at her collateral veins. All the outward signs show that they are still under tremendous pressure, and the primary treatment for leaky or bursting collateral veins is to cauterize them...which just puts the rest of the veins under more pressure.
Would you join us in praying for a miracle? A parting of the red sea, raising Lazarus from the dead, feeding the 5000 kind of miracle?Underneath that delightfully sunny disposition, is a body that is broken and severely in need of repair. The same God who raised Jesus from the dead and gave us hope of eternal LIFE can heal Elizabeth. We'll just keep asking.
Happy Easter. He is Risen! He is risen indeed.

"Oh How We Love You Little Ruby Christine"

You'd think that since I'm the resident Singer/songwriter in the fam, any lasting musical tributes would be composed by yours truly. But, no. Daddy has become the lyricist and the girls LOVE his songs. This one was a joint effort, sung beautifully by our little Elizabug. Oh how I love these girls. Here are the lyrics, sung to the tune of "Music Machine" (a record we grew up listening to). "Ruby Christine, Ruby Christine, you're one of the cutest babies I've ever seen. You've captured my heart, and made it to sing, Oh how I love you little Ruby Christine."

Tuesday, March 18, 2008

Sunshine indoors

It's rainy outside, but the sun is shining in our home today!

Sunday, March 16, 2008

Spring is springing??

We started the week with snow covering the ground, and by Friday, it was warm enough for a jacket-less trip to the park. Since it's our first experience of the changing seasons in the midwest, I won't declare it's spring yet...but I think it's on its way! Here are a few pictures of our full days.

Mar 7-14

Wednesday, March 5, 2008

Grandma & Grandpa Harms came to town

We were so blessed that for Valentine's Day Grandma and Grandpa Harms gave each other a trip to St. Louis at the beginning of March. What a treat! They came for a long weekend....the warmest long weekend we've had this winter. Of course the day they left a storm came in and within 24 hours we had 10 inches of snow! A day late for my taste. We would have loved to have them stuck here with us for a few extra days.

Elizabth had a ball and Ruby couldn't get enough of the attention. They were in constant entertainment mode! Singing, dancing, playing & snuggling. Matt and I got to go on a date on Saturday afternoon too, so I think the weekend was a success all around. We can't wait until the next visit.