We had quite the stormy afternoon, preceded by a beautiful morning, followed by a calm and cool evening.

Ella is a reminder every day of our Lord’s mercy and grace. She is such a beautiful child…so happy and smiley. Praise God for His promises. I reflect upon them whenever I witness a rainbow. What an awesome sight after a storm.

Genesis 9:16 (New International Version)
“Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth.”

Tina is at our neighbors house running her first Entertaining at Home party while Megan (the sitter in training) and I watch the Bun. Ella’s been in a good mood and has started to enjoy her exersaucer again. You just might be able to tell by the pictures below….enjoy =).

OK…so…maybe I made a few funny faces off camera too. =)

Tina and our sweet neighbor went out for some girl time so I chilled out with the Bun. Obviously her hairstyle and outfit represent who’s taking care of her =).

Overall it was a pretty mellow day, but Ella did have one hairy meltdown moment where she desaturated again very quickly. She didn’t fully pass out, but I think she gets scared which makes it worse. It’s not fun to experience these and I hope we get some more direction next week. Ella’s pulmonologist is out of town so we’re waiting to discuss some of the details with him.

Praying we find a solid solution in the coming days that doesn’t require any invasive procedures.

Today we all went out as a family and ran some errands. We’re in the market for patio furniture so most of the time was spent hunting around for things we would like. When we arrived at a location, Tina or I would take turns going in to take a look around while the other stayed in the car with the Bun. We brought her along inside one time though, doing our best to minimize any undue exposure.

At this moment I’m very relieved about the fact that Ella has not passed out since we increased her diuretic. I’m happy about this for two reasons: First, she’s not passing out. Secondly, if the passing out trend were to continue, we would have to pursue other invasive procedures to determine the cause.

We are so thankful for the progress Ella has made, and she has made incredible progress, but it is still difficult. We’re reminded every time we see another “healthy” child running around, often times even younger than Ella. Then, we catch ourselves and His truth comes to mind. Tonight, I had a traditional doxology placed on my heart. This is the final verse of a hymn written in 1674 by Thomas Ken:

Praise God, from Whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heavenly host;
Praise Father, Son, and Holy Ghost.
Amen.

We continue to trust in our Lord and Savior, knowing that He has a perfect plan for her life. We’re so blessed that He chose us to be her parents.

We had quite the storm system move through the Front Range today. Five tornados total for the Denver metro area with one touching down only 3 miles west of us. Tina was out enjoying some girl time with our neighbor, and was no where near the action (thank God).

I was home taking care of the Bun when I noticed the very dark clouds just north of us. The wind had started picking up too so I went online to check weather. There was a tornado watch for our area and Doppler radar showed the southern edge of the system skirting by our house.

Within a few minutes, hail started to fall, and I prepared to head down to the basement with Ella. I moved her away from the windows and watched the storm intensify. Hail progressed from pea to almost golf ball size. It was pretty intense for a bit, but then the storm started to subside, and the hail turned to rain. The whole episode lasted about 30 minutes. The pictures at the top of the post show the view out our window and the the size of the hail I picked up after the storm.

I turned on the news and saw that the mall down the street from us had sustained some damage from the tornado pictured above. There was a condo across from the Lowe’s Hardware Store that had its windows blown out and a trailer thrown onto their lawn from across the street. I found some pictures of the trailer and hail on a Flickr account.

Praising our Lord that we’re all safe and sound tonight.

Tina came home this evening from her outing and we snapped these cute pics of her and the Bun. Looking forward to Ella’s Dr. appointments on Tuesday.

Overall Ella’s doing pretty good, but the speed at which she can desaturate when she’s melting down is a bit concerning. It doesn’t happen every time, but when it does, she will pass out within 10 to 20 seconds from the start of the episode. The speed and frequency of these episodes have increased which is why we’re a bit anxious for her to see her Cardiologist and Pulmonologist. She’s scheduled for an Echocardiogram which will probably require some sedation this time so they can perform a proper evaluation.

We appreciate the continued prayer for Ella as well as wisdom and guidance for our next steps in life.

What a beautiful sunny Saturday morning in Colorado. Grandpa came over for breakfast, and we spent some time on our deck soaking in the weather. He brought his two “kids” over and they enjoyed running around in the backyard.

After dad left, I did some yard work and was only able to complete the front and some of the backyard before it began to rain / hail. Typical Colorado spring weather though: nice in the morning with thunderstorms in the afternoon.

While it rained outside, the Bun flexed her leg muscles in her exer-saucer. She has really got the hang of being in there now and is doing great pushing herself up. Yup…just a preview of her standing on her own someday!

Ella continues to experience a good amount of retching which doesn’t get any easier to deal with, for us, or her. Like Tina said yesterday, we did notice a decrease in her retching while out in California. Thinking that it may have been related to the increased humidity, we broke out the humidifier we had previously used in her room.

We have used this cool mist humidifier in the past, but it seemed to increase the amount of Ella’s secretions which would only make the problem worse. It has been awhile since we used it, so maybe things are different now. We put it out on the table this morning, and next to her crib throughout the remainder of the day, but we didn’t see much difference in her retching. I may just run it in her room over the next week to see if there is any improvement. Here’s hoping.

We do have a prayer request this evening. There are a lot of big life decisions that we’re trying to flesh out relating to Tina’s future work, getting a nanny, etc. Our hearts desire is to be obedient to what the Lord wants, and we are prayerfully seeking him in these matters. If you would pray for wisdom, discernment, and direction for us in the coming days and weeks, we would appreciate it.

Thanks to all of you for continuing to follow us on this journey. We savor all the love and support shown in comments you make and emails you send. We are blessed to have you here with us.

The picture above says it all. Even though we added an extra day of travel time on the way back to Colorado to break up the driving, we still are wiped out. We originally planned to recover at home today, but that didn’t happen.

The drive went without incident, except for some rain showers. This made for some beautiful scenery though and a very active Colorado River.

The last couple nights have been rough from a sleep standpoint because Ella’s schedule has been totally off. We tried putting her down at 11pm last night, but she didn’t settle down until 1:30am. We’re hoping tonight she gets on track because a sleepy Bun is a cranky Bun. I’m not too keen on not getting any sleep either ;-).

Good news is that as I type this, Tina is putting Ella to bed (9:30pm). Hopefully she’ll sleep well in her normal environment and we’ll all get some good rest.

We had a great time escaping to California to see family and friends, and thank God for watching over our travels.

While we were packing the car, Ella was doing her morning exercises. Gotta love pics of the Bun rolling over. So awesome to see the progress she’s made in this area!

Well, the plan to leave California at 10am was pushed to 1:20pm. It was nice to take our time and we made it to St. George without incident. After the drive, we also decided we’re going to take one more day of vacation by staying tomorrow night in Palisade, CO. This will break up our last 12 hours of driving over two days.

Ella did good on the drive except for the couple times she became overly tired and decided to get cranky about it. After a nap each time, she snapped out of it.

Hoping the rainy / stormy weather doesn’t impact our drive too much tomorrow.