Posted (Tina) in All Posts on July-27-2009

…just for all of you.

Posted (jooosh) in All Posts on July-24-2009

What an incredibly fun way to cap off two amazing years of the Bun’s life. We took Ella to the Zoo for the first time and she really enjoyed herself…actually, we all really enjoyed ourselves. Ella didn’t fuss once the entire trip even with the 95+ degree heat! Yes, we chose to go the the zoo on the hottest day we’ve had in awhile, but even with the heat it was still a great time.

Afterward, we headed over to Grandpas house for the birthday festivities including cake, decorations, present opening, and singing of the birthday song (which is included below in video form). It was neat to have family around to celebrate Ella’s special day.

And here are some close up pics of Ella’s first doll. We think she really liked her. =)

These years have flown by so quickly, I just can’t believe that the Bun is two! We have been incredibly blessed by this precious girl and yet these last couple years have been the most challenging times of our lives. Ella Renae is such an amazing kiddo, and it absolutely blows my mind to hear how other lives have been impacted by her journey. Praise God for this sweet child.

Thank you for being here each day, praying for us and with us, and for caring and loving our miracle girl. We look forward sharing Ella’s progress in the coming years.

Thank you Jesus for this amazing gift of a child. Through all the struggles, there has been incredible blessing. Bless Ella Renae and continue to heal her body. May she grow strong physically and mentally and may all that she does in her life be glorifying to you. You are an awesome God, and we praise you for the life you have given us. In your Holy name I pray….amen.

Posted (Tina) in All Posts on July-23-2009

Well, I cannot believe that the Bun is turning 2 years old tomorrow. So much has happened in our lives over the past two years. It has been filled with many ups and downs. Along with the trials, there have been the blessings too, including the birth of Ella Renae.

On another note…yeah, I think it is time. It has been amazing to keep a blog post every single day since Ella has been born. We hope that it is an incredible gift to her. I know that it has already served us well as far as record keeping with milestones and her health status. But, I do think it is time to dial back on the posts. It doesn’t mean that we will not post, but it has been quite the task to stick to it every single day. I thought we would take this step last year, but then felt prompted to continue the daily posts. So in a weird way, I’ve given all of you 1+ year notice of this change!

I hope that many of you will continue to follow our journey. If it is easier, you can sign up for emails so that you are notified whenever we post a new entry. This way, you won’t have to guess. But there will definitely be a post for tomorrow since it is officially the Bun’s 2 year birthday! Woo-hoo!

Psalm 147:7-11 (The Message)
Sing to God a thanksgiving hymn,
play music on your instruments to God,
Who fills the sky with clouds,
preparing rain for the earth,
Then turning the mountains green with grass,
feeding both cattle and crows.
He’s not impressed with horsepower;
the size of our muscles means little to him.
Those who fear God get God’s attention;
they can depend on his strength.

Posted (Tina) in All Posts on July-22-2009

Ella had both OT and PT today. She was a bit cranky during both sessions, but each therapist was able to get a little bit done.

I didn’t mention it in the last post, but Ella passed out last night. All the color left her face and she arched her back and passed out. It took about 10-20 seconds. That is the first time that she has passed out in a handful of weeks, since her meds were increased. We’re on the lookout for other clinical symptoms that might indicate fluid retention.

Ella has shown a bit of weight gain, but it has been steady over the past few weeks, so we’re not convinced it is from fluid. As of this morning, she is up to 11.49 kilos or 25.27 pounds. So she’s gained 1 pound since we increased her meds. The signs can be so subtle and happen over time, so we’re just trying to pay real close attention.

In anticipation of Ella’s birthday, we wanted to get her a baby doll – her first one. I looked and looked at stores, but could not find one that was going to work. Then I remembered that I still have a box of my baby dolls. I had some specifics that I wanted and Grandma West decided to help make it happen. Today, she started getting the baby ready by cleaning her body and hair. Then, putting her hair in pony tails and decorating with ribbons. The main idea that I wanted to make sure of: that we could make the baby doll have a scar and g-tube just like Ella. We’ll have to take pictures of the final product, but the pictures above show Grandma West in action!

And of course, the Bun in action too…

Posted (Tina) in All Posts on July-21-2009

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.

Posted (Tina) in All Posts on July-20-2009

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.

Posted (Tina) in All Posts on July-19-2009

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…

Posted (Tina) in All Posts on July-18-2009

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.

Posted (Tina) in All Posts on July-17-2009

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

Posted (Tina) in All Posts on July-16-2009

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.