Ella woke up a bit earlier than normal. This ended up not being a good thing when it was time for occupational therapy. We tried to replicate our great session from yesterday, but Ella was not cooperating. She seemed tired and cranky. So, the session ended after trying for 30 minutes. Ella melted down pretty much the entire time and it was hard for her to collect herself. Again, I was convinced that she was just overly tired.

Sure enough, an afternoon nap seemed to cure the cranky princess. That is when I decided that it was time for the camera, thus all the smiles. She was definitely in the mood for physical therapy and had another great session.

It was great because Ella was even more tolerant than yesterday when it came to her weight bearing exercises. She was allowing the PT to maniuplate her arms and legs, forcing her to bear weight. I didn’t post any of these pictures but the PT even brought along a small ball and tricked Ella into weight bearing through her arms on the ball. It was great – Ella had no idea that she was even exercising.

About three times today, Ella retched so hard. Her airway was getting blocked with all her secretions and she gets so upset, it just makes the situation worse. After consoling and increasing oxygen, we did not have any bad mishaps. But it seems like the near passing out moments are all too frequent. I’m not really sure why or what the difference has been except that when she gets upset, she desaturates very quickly these days. And anyone who has spent time around Ella knows that her favorite trick when she is upset is to hold her breath.

So, I had a near pass put moment last night after bath time and 2 different times today. I have to crank up the O2 and even blow in her face gently to get her to breathe. I’m just praying that this is not a sign of something else going on because these episodes seem to have increased since her SVC procedure.

I have several sources for devotional readings. Isn’t it great when the one you choose just speaks to your heart and spirit?

The Source of Hope

Hope can be defined as the desire for something good and the expectation of receiving it. Jesus Christ is the only genuine source of hope, because He alone knows what is best and has the sovereignty and power to secure its fulfillment. All other hopes are grounded on the shifting sands of circumstances beyond our control.

Each of us has expectations for the future, but these often pertain only to this earthly life. Christ promises us the “living hope” of an imperishable inheritance in heaven. Everyday desires will all fade away, but our home in heaven is eternal. This is our ultimate security and anchor when the storms of life are severe.

But how do we endure times of trial right now? Heaven can seem so far away when pain is present and there’s no relief in sight. Hope anticipates a change of circumstances for the better.

And what about times when our situation is not improving—then, what is God doing that is “better”? Peter tells us He is refining our faith, which will result in praise and glory when Jesus returns. This is more valuable to us than gold or even relief from our distress. What a paradox! The difficulties which cause us to lose hope are the tools the Lord uses to increase our faith and hope in Him.

Christ promises us hope not only for eternity, but also for this life. Those times that God does not deliver us from difficulty, we can be sure He is doing a greater work within us. When we finally reach our eternal home, we’ll recognize the immeasurable value of the faith He produced in us as we kept our hope in Him.

1 Peter 1:3-9 (New Living Translation)
All praise to God, the Father of our Lord Jesus Christ. It is by his great mercy that we have been born again, because God raised Jesus Christ from the dead. Now we live with great expectation, and we have a priceless inheritance—an inheritance that is kept in heaven for you, pure and undefiled, beyond the reach of change and decay. And through your faith, God is protecting you by his power until you receive this salvation, which is ready to be revealed on the last day for all to see.

So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold—though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world.

You love him even though you have never seen him. Though you do not see him now, you trust him; and you rejoice with a glorious, inexpressible joy. The reward for trusting him will be the salvation of your souls.

Ella had a rough night. She was up a handful of times, so she needed more rest this morning. Our OT session was canceled and that may not have been a bad thing. I didn’t get the sense that she would have tolerated the session. This gave Ella more time to wake up, relax and decide that she wanted to work this afternoon for PT. Once again, she did really well and the pictures are evidence of her starting to tolerate the weight-bearing exercises more often.

We’ve increased Ella’s bolus feeds during the day to try and eliminate the nightly feed via the food pump. We haven’t quite reached our goal, however, we decided to try and bolus 6 times per day instead of 5 times. It has been tough to get the last feed in late at night before she goes to sleep, but we have managed to try it a few times this week with success. As she continues to grow, it is easier to see how getting rid of the food pump at night might start to become a reality. That reality is exciting!

Ella has ceased gaining weight over the past week to ten days, so it might be time to increase her volume of food. We will not get a weight on her for about 10 days while we are on vacation, so if she has not increased her weight by the time we return, I will need to place a call to her doctor to see if we can increase the volume. Since she is so fluid sensitive and we do not have any conclusive results from the post-op SVC procedure, he may decide that weight gain is not a priority.

We’ve had a few good bath times over the past week. Not all of them, but we’ve had more than a sporadic occurrence. It is so much more enjoyable to give a bath without a child screaming and not breathing!

We’re excited to wake up and start our drive tomorrow. It will be interesting to see how Ella does since the first shift of driving is long. Although we will stop for breaks to feed her, change diapers, etc., I’m very interested to see how she does over the long haul. The only time we’ve done a long drive is on our way back from Florida. We limited each day to 4-5 hours of solid driving with breaks. Our first day tomorrow will be nearly twice that amount. She is older and enjoys the car more, but that is still asking a lot of the Bun! And we will be in remote areas where nothing exists, so please pray for our safe travels and for Ella to be in a good mood!

For as long of a drive we had to St. George (12 hours total with stops) the real saint was Ella. She did awesome. Very few fussy moments and did great the entire trip. Shortly after we arrived in our hotel room, she went right to sleep.

First leg down, next leg tomorrow…So Cal here we come!

Enjoy the pics of our journey below. Man…God’s creation is incredible, especially our precious child =).

We made it! Once again Ella did great, but we are all just wiped out. The Bun is already sleeping and we’re not far behind her. Looking forward to some rest…

We all had a great day hanging out with the Snyder family. There were 10 people over for dinner at Aunt Ginny’s and it was a good time for all. Ella mostly behaved herself while being around everyone. She had a couple moments where her stranger anxiety got the best of her, but otherwise she did very well.

We also had some time outside for lunch. We’re trying to hit the restaurants that we’ve really missed since being in Colorado.

Around 8:39pm we experienced a 4.7 magnitude earthquake for about 15 seconds. We grew up out here, so it’s not a totally foreign experience for us, but that magnitude is more on the medium scale. It was a pretty solid roller though and I felt it real good because I happened to be “in the library” at the time of occurance (that was a first for me). It was certainly Ella’s first earthquake!

Looking forward to relaxing with the Bun and catching up with more family and friends this week.

We all had a good day seeing friends and family…and we have the pictures to prove it.

Waking up with Bun

Lunch with our friend Ani

Visiting with the Lazio’s

Visiting uncle Cliff, but only through the car windows because aunt Diane is sick.

Driving around Huntington, Newport, and Irvine

And leaving you with this photo of the Huntington Beach Pier

Drive to Newport Beach

The highlight today was Ella meeting her great grandparents. This is the entire reason we came to California for this trip: we wanted to make sure that they had the opportunity to meet their miracle great granddaughter.

Arriving at the Great Grandparents

We had a great time hanging out for lunch. And Ella was showing off with her laptop computer again. Great Grandma was observing closely with loving eyes.

Ella and her great grandmother

From Newport Beach, we traveled back down PCH to Dana Point to visit with a dear friend. We were at her house until 11:15pm, so we’re looking forward to going to sleep!

Tomorrow is a day of sleeping in and visiting with more friends. We’re also trying to soak in the perfect California weather and the beautiful views of the coast.

Ella sure does enjoy her computer time. I think it’s a genetic thing.

Today was spent visiting with some friends we hadn’t seen in years. Emmit, who I worked with way back in 1994, and his wife Jackie drove up from San Diego for a visit. We had a great time catching up. When they were on their way out, they invited us to see my manager from the same company. So we packed the car and went down the street for a quick visit at Starbucks. Such a trip seeing faces you’ve not seen in over 15 years!

Afterward, we headed out for an early dinner. Then we drove around an took in the views around Laguna Niguel. Love the hills out here.

After returning to “base camp”, some other friends (Paul and Heidi) that we knew from church came over for a visit. Such a good time seeing friends from years past.

Heading back to the great grandparents tomorrow, more time with Grandma West tomorrow night, Ella’s aunt and uncle on Friday, and then making our way towards Colorado on Saturday.

Just trying to soak it all in before the long drive home.

Ella had another amazing day. We think that she simply likes the idea of vacation – she gets to spend lots of time with Mom and Dad, go for rides in the car and look at amazing scenery, visit with people and not be sitting at home!

We had a great day back at the great grandparent’s house down on the Balboa Peninsula. After lunch, it was so gorgeous outside that we had to take a walk to show Ella the water.

When we settled back into the house, Grandma West could not resist any longer. She was good about giving Ella her personal space and letting her warm up to her. Finally, she crawled on the carpet and got real close to the Bun.

We wanted to make sure that Great Grandma had a chance to connect personally with Ella. After all, she was one of the main reasons we made the long drive out to California.













As you can see, Ella had a great day filled with lots of time with family. We have even more family to visit, although tomorrow is our last day to soak up the beautiful scenery and amazing weather. We’re going to do our best to enjoy our last day in southern California.

It was our last day of relaxation in Southern California. The weather cooperated all week for us – – it was absolutely perfect.

We spent the morning relaxing and followed up in the afternoon by running errands. We had to make a run to Trader Joe’s for some favorite coffee and wine. Also, we made a run to exchange some oxygen tanks for the drive home.

Then, we went to see Aunt Shannon, Uncle Rick and the cousins. Since Ella can’t be around kids, we displayed her through the patio door. This way, her cousins could take a peek at her. That was a fun time!

Toward the end, Ella was having some good laughs with Uncle Rick. All in all, a great time in Southern California. We miss it!

On a final note, many have asked about Ella’s oxygen requirements at sea level. She is definitely requiring less: about 250ccs at night and 500ccs during the day. At home, she is about 250ccs higher: 500ccs at night and 750ccs during the day. So although it is less overall, I actually thought that the change might be more significant.

Our plan is to head out late tomorrow morning and start our journey back to Colorado. Our first stop is St. George which will likely take about 8 hours total with stops. That is if we don’t run into really bad traffic. After all, it is Memorial Day weekend and we have to take the route through Las Vegas.

We’re hoping and praying for minimal traffic and safe travels. If Ella was half as good as she was on the drive to California, we’re in good shape.

Psalm 62:5 (NIV)
Find rest, O my soul, in God alone;
my hope comes from him.