Sunday, August 23, 2009

Time for Reflection

Sara and I will be taking some time away in an attempt to recenter our lives. It won't happen in one day, one week, or even one year, yet we need to start the process.

We wish to thank everyone for their outpouring of prayers and support. It has helped sustain us through the darkest days we could ever imagine. Thank you we love you all.

If you are in any way able, making any size donation to the Alagille Syndrome Alliance in Olivia's name will go a long way toward helping other families affected by this insudious syndrome. Thank you so much to the generous outpouring we have already seen.

Continue to check in here every once in a while, I still have some things I need to say.

Until then,

Peace to you all,

Love --

Ben & Sara & Our Little Angel Olivia

Sunday, August 16, 2009

Sleep Well

with your eyes of steel blue,
you pierced my heart.

with your red-golden locks,
you bound my heart to yours

with your toothless smile,
you stole my heart.

with your delicate fingers,
you held my heart.

with your laugh and giggle,
you tickled my heart.

with your cry,
you broke my heart.

with your silence,
you tore my soul asunder.

sleep well my angel,
you will be forever in our hearts.

OAH 2/19/09 - 8/16/09


Tuesday, August 4, 2009

Stuck in a Rut.... (Part 1)

... with babies we've found out that's not so bad of a thing.

Olivia has had a pretty hectic schedule for the last
2 weeks, leaving us all a little more or less frazzled :)

Week 1 itinerary:
  • Monday Evening:
The Disco Crib Experience - 10pm - ?
  • Tuesday:
8:20am U of M Liver Recheck
8:40am U of M Kidney Recheck
9:30am Vampire Blood Draw
12:30pm Kidney Ultrasound
1-3pm Eat Lunch, Nap, Travel Home
3:18pm Acquire another stuffed animal
  • Wednesday & Thursday:
Normal Routine @ Home & Grandma's






  • Friday:
Late Afternoon: Kansas & Missouri Huelsbergen Clan Arrive

Olivia was not impressed with all the new arrivals: My Father, Brother, Sister-in-Law, 2 cousins, 2 dogs and 1 bird. She gave them all "The Look" -- trying to decide if they were going to poke and prod her like most all newcomers (Docs and Nurses) do. She showed her dissatisfaction with numerous grumpy faces and crying. Great now my family thinks she's a complete grouch....
  • Saturday:
AM: Hang out at home & watch her cousins freeze in the unseasonably cold pool. Rianna and Lianna had a blast splashing in the water even with chattering teeth. At least the afternoon swimming session had some bouts of sun. (Pic to the right: Sara, Olivia, Grandpa Huelsbergen, & Rianna) The true Olivia started to make some appearances in the morning with a few smiles here and there, but the hustle and bustle still had her on guard - shooting "The Look" more than a
few times.
PM: The weather warmed up in the afternoon for a leisurely stroll around the grounds at Leila Arboretum. (Pictured to the left -- Myself, Olivia, Rianna, and Lianna in the background with a walking stick as tall as she is.) Everyone seemed to have a great time soaking up some sun and fresh air. Olivia really enjoys riding in her papoose,
it gives her a great vantage point absorb her surroundings. Over the last few weeks she is becoming much more aware of her environment - movement, sounds, & new objects. This walk proved to be just the ticket to put our little diva into a nice long nap. She didn't even make it home before she fell asleep. Home for a Barbecue and more sleep.


  • Sunday - "We're Going to the Zoo!"
AM -PM: I feel we're very fortunate to have a very nice Zoo here in Battle Creek - Binder Park Zoo. For a non-metropolitan area, this zoo is quite progressive and attempts to place animals into a more 'natural environment.' The plan for today was to make it to "Wild Africa" and feed the giraffes. Olivia's cousins were very excited about this Safari. We packed our things early and were ready to go when Olivia woke up from her morning nap. We haven't gone on too many outings besides Doctor visits and little shopping
trips, so this was going to be interesting. Olivia did quite well, all the people, new sounds, and smells did make her look a little wide eyed at times. While riding the tram to "Wild Africa" it became a little breezy and Olivia had some pretty priceless expressions on her face when she got a blast of the air. "Wild Africa" exhibit is laid out in about a 2 mile loop taking you by
an assortment of African Wildlife -- Giraffes,
Zebus, Wild Dogs, Monkeys, and Birds. A little sprinkle of rain didn't dampen anyone's spirits. A quick lunch in the cafe, an Ice Cream Cone for Rianna & Lianna, and it was time to head home. Olivia had reached her limit of stimulation and was letting the world know she was ready for a break.

PM: On to dinner at Clara's on the River, a nicely restored railroad station from the later 1800's. A nice evening out with close family, good conversation, and good food... what more could
we ask for. Olivia was able to suck on her bottle in style with three Grand parents, her aunt & uncle, her cousins, and of course her parents.... not that she really cared who was at the table as long as someone supplied the grub. It was a late evening before Olivia finally got to her own bed/crib, but she 'slept like a baby' once she was down.