Sweet potatoes are everywhere…on the outfit, the bed, her hands, her mouth. Orange stains everywhere! I am happy that she is tolerating the food, but it is not fun to clean up each day!

Physical therapy was a bit later in the day today, so there was about 2 hours and fifteen minutes between appointments. This worked better as normally there is only about 1 hour and fifteen minutes. Within that extra hour, Ella was able to eat, take a nap and have plenty of time to wake up with lots of energy. The PT suggested taking Ella over to the stairs and doing therapy over there to mix it up. Ella responded well as she played with her giraffe, the laptop computer and her books.

In between, she is still rolling over in her pack-n-play, weight-bearing on her arms. She has made so much progress in this way.

Also, her teeth are definitely bothering her. She was putting everything in her mouth today, especially her hands. She was also licking her forearm, trying to see if even her forearm could fit in her mouth.

We went for a drive later to run some errands. Boy, she just loves getting out and taking a ride in the car. It’s great!

2 Corinthians 1:4 (NLT)
He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

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.”

The Bun has not gained weight since her increase in food on Monday, June 29th. Her food has increased 110ccs per day and we’ve doubled her dose of diuretic and yet, she is the same weight as way back before her increase in food or medicines during the early part of June. This confirms that she was retaining fluid. Since we doubled her diuretic, we have not had any pass out moments. Praise God!

And although the scale is not showing her growth, I feel like she is getting tall. She almost reaches from one end of the pack-n-play to the other! When did this happen?

For whatever reason, she’s experienced bad episodes of gas the past 24 hours, which included a 2 hour crying spell last night along with nighttime interruptions and more today. So, all of us are worn out and tired this evening. Signing off for now, so we can all go catch some much needed zzzzsss.

Philippians 4:4 (NLT)
Always be full of joy in the Lord. I say it again—rejoice!

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.

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.

Yup…that’s right…Dad’s on Bun watch full time for the next few days. Tina’s on a mini vacay, off to see her best friend in Texas. I just got off the phone with her; She let me know that the flight was uneventful and she’s really enjoying the weather. I’m not sure if she said “enjoying” exactly, but there was something about the 98 degrees at 9pm plus tons of humidity when she arrived. Sounds nice to me. =)

So far, the Bun has behaved herself, and I plan to try and behave myself too. Thanks for all the thoughts and prayers related to the job situation. We’ll see how things go in the coming weeks.

Thank God for where he has us today, and for sweet Ella Bun’s overall health. She is pretty pickin’ cute!

Bun and I had a good day, but we’re both missing mommy. Counting the moments ’till shes home.

I have a prayer request this evening. Please lift up this beautiful family and their precious daughter Avery. She’s an amazing CDH baby that has had a journey similar to Ella, including other heart complications, and is currently dealing with fluid issues. Pray for Avery’s strength, the family’s peace, and wisdom for the doctors.

Heavenly Father, we lift up this sweet child to you and ask that you keep her stable and give her strength to come through this. May your peace wash over the family, and may you give discernment and wisdom to all doctors involved so that they may assist her body to heal. Thank you Jesus for this life and the family’s testimony. In your name we pray…Amen.

Ella’s grandpa came over for lunch today. We had a good time catching up. And then our dear sweet sitter Megan came by to watch the Bun this afternoon so I could have a break. I escaped by grabbing a bite at Chick-fil-A and went to see a movie. Last time I saw a flick in a theater was over a year ago in Gainsville. It was a nice break.

Ella has behaved herself today. She pitched a bit of a fit during bath time this morning, but that’s to be expected from our drama girl.

Lisa asked about Ella taking out her cannulas. It’s funny because the only time they really come out is by accident. Ella will actually try and put them back in her nose if she can. You figure for her she’s always had them in there. Maybe it’s like wearing a seat-belt. When I was kid they were optional, so I didn’t always think about it. But now, it’s actually uncomfortable without that strap across my chest.

Glad the Bun is doing pretty good these days. Praise God for her precious life.

P.S. Please continue to pray for the Keirseys. Avery has really struggled with some fluid issues over the last few days. I hope and pray they find a treatment that will help this sweet child.