Dec
26
     
Tickle Game(Day 520)
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
forever.


Jim and Char Jordan on December 27th, 2008 at 1:50 am #

Oh how important it was to miss my flight to Denver. I am so blessed to have had opportunity to see the Bun and have just a few minutes with my brother and enjoy an evening with Tina, Josh and Kelly. When I look at the pictures on the blog,I have a better idea of where things are and just how things are at your home. Thank You for the dinner, bed, love and caring. I certainly needed the refreshment both spritually and physically before my continued trip.
I was afraid to get too close to Ella since she has stranger sensitivity. I will wish to get closer the next time we meet. Perhaps that will be a wonderful experience.
Glad to see M&M doing so well together. Manny looks a little bewildered with Maggie’s enthusiasum. She will mellow, I guarantee. Good to feel family once again.

Kelly "Supernanny" Fischer on December 27th, 2008 at 11:55 am #

Oh, Ella. I’m so happy you’re still doing well, though I’m anxious to see what today is looking like, and if you need your Bumex to dry you out again. But, Praise be to God that we only have to do it every couple of weeks, rather than daily like it used to be!

Definitely praying for Olivia and the family there. I wasn’t around when Ella was in the NICU, but I remember reading all of the posts a few months back and how heavy my heart was that you HAD gone through that, and now to be seeing it happening in this moment with Olivia is really a shock to the system for me. It’s totally different when your perspective is different.

Bunness, your haircut looks darling and I love the new headbands Grandma made for you! Can’t wait to see your new frog covers tomorrow night!

Father, please lift up Ella and Josh and Tina during the rest of this Holiday season. We’ve all felt your love and tender comfort these past several weeks seeing Ella doing well and progressing, but we know she is in Your perfect hands to do with what you wish. I pray that we would be your vessels to guide Ella as she grows into the magnificent child and woman you have already destined her to be. And I pray that you would heal Olivia and provide for Doug and Jacy in these trying times, and never let them go a second without your magnificent comfort. Amen.

Joel Snyder on December 28th, 2008 at 12:11 am #

Ella, It was a great Christmas with the family all togeather and the dogs having a great time. I must say even with some of your problems still occuring you were amazing in your jump up chair. I can tell you are getting stronger each time I see you. Thank you Tina,Josh,and Lynn it was a really good day. I am praying for Olivia and hope that she will be in Gods hands and protected. I will catch you later. Love,Grandpa!!!!!!!!

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