Posted (Tina) in All Posts on December-26-2008

Today was low key. It was nice to have another day of work to just relax. One of my favorite things is to tickle Ella. She gets a kick out of it too and Josh caught it on film.

The photo of Ella on yesterday’s post tells you the type of Christmas that she had…a fun one! She sat in her exer-saucer for over an hour! It was amazing. Santa, grandparents and friends gave Ella lots of goodies including new videos, books, and an animated Elmo. Grandma West even made custom frog covers for her! You will start to see them in the photos since Ella is holding one pretty much all the time!

Maggie and Manny were running around the house playing with each other and then sleeping on the couch together. Josh and Grandpa were laboring away in the kitchen all day, but all their efforts were well worth it – we had the best Christmas dinner.

Ella is doing well with her z-vibe toy and getting better at tolerating her inhaled steroid. The oral feeding is tough…she barely tolerates it depending on her mood in that moment. I’ve had the best success with feeding small amounts of apples from my fingers versus the spoon.

As Ella went to sleep tonight, her heart rate was especially high from her Captopril (one of her heart medicines). This is a typical response from her (her heart rate is high anytime within 45 minutes of administering the medicine). But tonight, she also needed 1.5 liters of oxygen to settle down. We’re hoping that was just a fluke but are on the watch. It has been 2 weeks since we administered Bumex and we’ve also increased her food intake by ~50ccs per day. Since the last several weeks have shown that she needs Bumex here and there, we’re trying to observe her clinical behavior closely to see if we can catch it early. We have a feeling that tomorrow might be the day that she needs a dose.

Tonight, our heart is heavy for the Bassett family. Olivia had a rough night and thankfully, Dr. Kays was around to step in. But, Dr. Kays is now on vacation for the next 10 days. Please lift up this family in prayer: they are experiencing the roller coaster of CDH and Olivia is having a tough battle just like Ella did. We know the Lord is right there during every moment, but pray for peace that surpasses all human understanding in the midst of the valley.

Psalm 23 (NLT)
The Lord is my shepherd;
I have all that I need.
He lets me rest in green meadows;
he leads me beside peaceful streams.
He renews my strength.
He guides me along right paths,
bringing honor to his name.
Even when I walk
through the darkest valley,
I will not be afraid,
for you are close beside me.

Your rod and your staff
protect and comfort me.
You prepare a feast for me
in the presence of my enemies.
You honor me by anointing my head with oil.
My cup overflows with blessings.
Surely your goodness and unfailing love will pursue me
all the days of my life,
and I will live in the house of the Lord