We were so consumed with picking up Grandma West and hanging out that we hardly took any pictures. Enjoy the few we did take of the Bun!

Matthew 5:3-8 (The Message)
“You’re blessed when you’re at the end of your rope. With less of you there is more of God and his rule.

“You’re blessed when you feel you’ve lost what is most dear to you. Only then can you be embraced by the One most dear to you.

“You’re blessed when you’re content with just who you are—no more, no less. That’s the moment you find yourselves proud owners of everything that can’t be bought.

“You’re blessed when you’ve worked up a good appetite for God. He’s food and drink in the best meal you’ll ever eat.

“You’re blessed when you care. At the moment of being ‘care-full,’ you find yourselves cared for.

“You’re blessed when you get your inside world—your mind and heart—put right. Then you can see God in the outside world.

Ella had a physical therapy appointment today. The Bun was bit cranky but the therapist still got her to do some exercise in her pack-n-play.

We are excited to have Grandma West visit us starting tomorrow. She will be staying for 6 days. She wanted to make sure and visit to celebrate Ella’s 2nd birthday which is only 4 days away! Since Josh is out of work these days, it should provide a nice time to visit as a family.

Each day has presented challenges regarding our situation and what He wants us to do. We’re trying to be patient and seek His will. Please pray for peace to rein in our lives.

Psalm 120:1 (NLT)
I took my troubles to the Lord;
I cried out to him, and he answered my prayer.

We visited Grandpa today to help him with some computer stuff. All of us were having such a good time that we did not realize we were skipping out on something important. My cell phone rang and it was the babysitter at my front door. Ahh! We completely forgot…and felt horrible. You’d think a date night would be enough motivation and that we would not forget. But we did! Making a mental note to not make that mistake again…yikes.

Here are pictures of Ella enjoying the ride over to Grandpa’s…

It was a nice day in the sun with Bun. We just decided to relax and enjoy the pleasant day together as a family.

Please continue to pray for us. We desire discernment on the next best steps to take.

Psalm 119:1-8 (The Message)
You’re blessed when you stay on course, walking steadily on the road revealed by God.
You’re blessed when you follow his directions,
doing your best to find him.
That’s right—you don’t go off on your own;
you walk straight along the road he set.
You, God, prescribed the right way to live;
now you expect us to live it.
Oh, that my steps might be steady,
keeping to the course you set;
Then I’d never have any regrets
in comparing my life with your counsel.
I thank you for speaking straight from your heart;
I learn the pattern of your righteous ways.
I’m going to do what you tell me to do;
don’t ever walk off and leave me.

Enjoy the pictures of our baby girl who is turning into a little girl…

It has been a bit strange without Pumps around. She was the first pet that Josh and I adopted about 10 months into our marriage. And in case you’re wondering, she was about to turn 13 years old. So she did live a long and happy life. She was more of a doggish-cat; very social and wanted to be nearby. Also, she was chatty and walked around the house talking a lot. This is why it seems so quiet without her around. Our other cat Macy is cute as ever and sleeps with me nearly every night. But for the most part, she has the typical independent disposition of a cat. On that note, Macy has been walking around “meowing” and so we think that she is looking for Pumps. Sigh…

Ella had both therapies today. She did better with OT versus PT. By the time physical therapy came around, she was just tired. Either way, she was sporting her new halter top from Children’s Place…so cute! Can you believe it is a size 3T ?!?

My friend Aimee came to visit me today and I forgot to have us take a picture – bummer! We had a nice time hanging out and catching up.

Still leaning on Him and asking for guidance and direction for the next steps. Praying that He will make His will clear to us.

James 1:5-7 (The Message)
If you don’t know what you’re doing, pray to the Father. He loves to help. You’ll get his help, and won’t be condescended to when you ask for it. Ask boldly, believingly, without a second thought.

Ella gained weight…yippee. She has increased to 11.36 kilos or 25 pounds! We know she is getting longer, but it is also good to see her gaining more weight.

The increase in weight is not likely due to fluid. Actually, we started adding baby food to her g-tube feeds. We are starting slow so that we do not cause any GI issues. So far, we added 1 tablespoon last Thursday, Friday, Saturday and Sunday. Starting this past Monday, we bumped it up to 2 tablespoons. Now keep in mind, this is 2 tablespoons for the whole day. We’re starting very slow…as we all know, Ella likes slow.

Not only do we want her to gain weight, but we want her guts to start processing food. The current formula that she takes is completely pre-digested. This is nice and easy on her tummy, but it is not good to have her belly not do any work for a long period of time. So, we decided that this would be a great way to work out her belly plus add some calories and nutrients. Hopefully, her body will be able to tolerate the gradual increases over the coming weeks.

The physical therapy and speech therapy appointments were both canceled today, so we only had occupational therapy. They had a good time together.

James 1:2-4 (The Message)
Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

I arrived in Denver this morning. Even though it was sunny and 83 degrees, it felt cool compared to the past few days. In Dallas, it got as high as 106 degrees while we were hustling around and enjoying girl time. I’m not sure about you, but that is HOT. Then today, in normal Denver style, there was an afternoon thunderstorm and it has been about 67 degrees since 3pm. I am not missing the Texas heat, but I am already missing my friend.

It was great to go away for a few days and have a change of scenery. At the same time, I greatly missed Daddy and the Bun. It looks like they survived and even more than that, had a great time together.

While I was in Dallas, I had the privilege of meeting another CDH family and their precious miracle. It was nice to meet in person after connecting virtually and it was great to see their 3 year old baby girl running around and playing up the drama. She’s as much a normal little girl as any other which is so good.

Ella had physical therapy this afternoon and enjoyed her session in the pack-n-play. Although she has been sitting up since the end of February, it is taking less and less effort for her. And this means that she can enjoy it more and do it more often without wearing out. She is not able to get into a sitting position on her own, but we are working on it.

As the sun sets for the day, we’re thankful for all the blessings in our life. We pray for guidance and direction on the next steps for our journey and we praise Him for our precious little Bun.

Psalm 69:30 (The Message)
Let me shout God’s name with a praising song,
Let me tell his greatness in a prayer of thanks.

We finally saw an increase of weight on the scale. Based on her clinical behavior and numbers, I think this is true weight gain. Up from 11.16 kilos to 11.25 kilos – or – 24.5 pounds to 24.75 pounds. Not a ton, but it is something! We hope the Bun continues to move in that direction and that it is not fluid retention.

Literally, two teeth on her lower left surfaced within the past two weeks. Now, another tooth surfaced today. This time, on her lower right just off center. It explains why she has the need to put everything in her mouth!

The great news for the day: Ella only had one therapy appointment and it went really well. The PT left her in the pack-n-play and had the video for distraction. It is the most exercise I have seen her do in a long time. Plus, Ella was smiling, kicking and just having a great time. That was fun to see and enjoyable for the therapist too!

Awhile back, I asked Josh if I could have another break to go visit my friend. He agreed and so starting tomorrow night, Daddy is going to be on Ella duty. The last time I went on a getaway in late January, we had a live-in nanny. So the lack of my presence wasn’t as intense because Josh took care of her in the evenings and overnight. But this time, it will be Daddy duty 24/7 for a few days.

Please pray for him and Ella. Literally, there are situations with her that are very intense and hard to deal with by yourself. Plus, it can be emotionally draining and he won’t have anyone to relieve him. We are thankful that our babysitter is still going to come and give him a few hours of reprieve over the weekend, however it will still be a long haul.

Psalm 19:14 (NLT)
May the words of my mouth
and the meditation of my heart
be pleasing to you,
O Lord, my rock and my redeemer.

Ella was restless last night and woke up a few different times. Thankfully, this has not been the norm these days.

Also, she is experiencing more gas with her feedings. The food density has not changed, but the volume has changed over the past week, so maybe it is starting to impact her. We think this is the main cause of her restlessness over the past 2 nights.

Her PT appointment went okay; she participated in the session for about 30 minutes. Then she hit a wall and decided that she did not want to work any longer. We might try mixing it up tomorrow and see if we can use her sitting up in the pack-n-play to trick her into doing more exercise! Distractions and doing things on her terms tend to work better. We shall see…

Later in the day, we had a speech therapy session too. We’re still in the strategy stages of figuring out the best methodologies to use with Ella. For example, using sign language versus a system where Ella would point to a picture to communicate. One more test will be completed during the next speech therapy session and then, we will get more serious about implementation.

We’re still seeking Him for the next best steps including both of us potentially looking for work and seeing where things lead. Above all else, we just want to be in step with His plan. We know beyond a shadow of a doubt that His plan is always best.

Ella is a huge example of His plan. It is so challenging and stretching to have a special needs child. Yet, one mom of a special needs child expressed her thoughts this way, “Kelsey is really an agent for positive and immeasurable change in all of us. She is a reminder that we can’t take all the stuff we think is so important and work so hard everyday in the end. Kelsey has taught us to transcend daily life. We all just have to take time to see it, and believe me; some days I completely miss what Kelsey is all about.”

Psalm 18:30 (NIV)
As for God, his way is perfect;
the word of the LORD is flawless.
He is a shield
for all who take refuge in him.