Posted (jooosh) in All Posts on July-15-2009

Ella had a good day and did well during her therapies. We’re all a bit wiped out though because it’s been a sad day for us. We had to put one of our cats down.

We knew something hadn’t been quite right for awhile. It wasn’t until the last few weeks when she had some dramatic weight loss and other symptoms that pointed to kidney failure that we knew it wouldn’t be long. We agreed that at the first sign of her starting to suffer, we would do the humane thing. Well that was today…and she’ll be missed. Every night for the last few years she would come up and “say goodnight” to me by giving me those rough tongue kisses on my nose. Pumps was such a sweet cat…even non-cat people liked her. Goodbye Pump-a-tudis.

Posted (Tina) in All Posts on July-14-2009

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.

Posted (Tina) in All Posts on July-13-2009

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.

Posted (jooosh) in All Posts on July-12-2009

So for whatever reason today, Ella decided to be a super duper pooper producer. Holy moly what a good time..heh. After the 4th diaper change I gave her a bath, cleaned her bed, and let her hang out in her almost birthday suit. I think she enjoyed it as shown in the video.

It’s been a good few days alone with the Bun, but we’re anxious for mom to come back. Ella and I head to the airport tomorrow morning to pick her up. It’ll be nice to have momma home.

Big day for Ella’s grandma…she turned the big 6-0…err I mean she’s 45..yeah…45. 😉 Happy Birthday to my mom, Lynn, the Bun’s grandma.

Also…thanks to all who are lifting up the Keirseys in prayer. Avery is far from out of the woods, but it looks like she doing a bit better. Please continue to pray for this precious family.

Posted (jooosh) in All Posts on July-11-2009

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.

Posted (jooosh) in All Posts on July-10-2009

What’s goin’ on dad?

How ’bout an impression of Popeye?

Or one of daddy when he’s eating pizza.

Or one of mommy before her coffee in the morning.

Oh…I am a dainty girl.

AHHH…my binky.

Maybe I can chew you real quick before dad sees.

So much for that.

Fine…I’ll chew this instead…

…and chew…

…and chew…

…and chew…

…and chew…

…and chew…

…and chew…

OK all done

Daddy?? Are you in there??

No…really…are you in there??

Here’s my uninterested-but-oh-so-precious look.

I’m tired now so I’m going to take a sweaty nap. G’Night

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

Keeping Up With the KeirseysI 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.

Posted (jooosh) in All Posts on July-9-2009

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!

Posted (Tina) in All Posts on July-8-2009

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.

Posted (Tina) in All Posts on July-7-2009

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.

Posted (Tina) in All Posts on July-6-2009

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!