Posted (jooosh) in All Posts on January-31-2009

Posted (jooosh) in All Posts on January-30-2009

And boy her arms are tired.

Tina made it home safe and sound. Ella and I picked her up from the airport around 7:30 tonight. Great to have her back.

Ella only woke up one time last night, although she was really fussy and inconsolable this morning. We decided to let her take it easy. She took a solid few hour nap in the afternoon, and upon waking up, looked to be feeling better.

We received a call from the pediatrician with her BMP details. All looks good. Her K (potassium) is at 4.9 which is right between the desired 4 & 6 mark. Her BUN is 21. Both these numbers are encouraging because it tells us that the weight adjusted aldactizide (diuretic) is helping her maintain her fluid balance, and the potassium is the right dose to keep her number in check. With this new info, we’re hopeful that we can maintain her at a good place without using any stronger loop diuretic (Bumex).

Kelly is enjoying some time with a friend tonight and we’re all looking forward to a relaxing weekend.

Posted (jooosh) in All Posts on January-29-2009

The Bun was a bit more fussy today. This leaves little hope for a solid nights rest.

We took a trip to have some blood drawn for a BMP. We thought about going yesterday, but the phlebotomist who usually does her draw was off. So we opted to wait ’till today considering how consistent and good he’s been with Ella. Once again, he was able to get the blood he needed on the first try.

Ella was such a trooper. She knows what’s coming as soon as the rubber tourniquet gets wrapped around her arm. She fusses quite a bit, but recovered fairly quick. She calmed right down for the drive home too.

Ella also had a pretty good PT session. So good to have some consistent progress in this area.

Please pray for solid sleep tonight for all of us, and also for Tina’s travels tomorrow. Can’t wait to have her back home.

TGIF Ella Fans!

Posted (jooosh) in All Posts on January-28-2009

Alrighty…one night down, two to go. Whoever prayed that Ella would sleep through the night last night, please offer that one up again. Ella slept SOLID through the night. She didn’t wake up until 7:15am, had a sip of juice, then zonked out again ’till Kelly woke her up at 9am. Thank God!

Ella had a great day overall too. She had a couple moments of fussiness when she didn’t get her way, but no real fits otherwise.

She had a solid OT and PT session. Ella’s getting closer to totally sitting up on her own. She had some support with only the Boppy today, and was able to maintain for a bit. This is so huge to see this progress. Krista, Kelly, and Ella have worked hard and that discipline is paying off.

We also received the scale we ordered for weighing the Bun. This should give us another indicator to see where Ella is from a fluid and growth standpoint.

Tina’s only been gone a day, but Bun and I are missing her tons. I know she’s enjoying her time with Terri which makes missing her a little easier.

Thank God for where he has us today. We are fortunate to be blessed with even the simple things…like heat, and shelter, when many in these times have lost so much. Lifting those up who have come upon hard times. May the Lord guide you through the valley, and may you seek his face during this time.

Lord, open our eyes to see those around us in need, and prompt us into action. May we be obedient to your Word and never pass by any opportunity to bless someone, and in return, be blessed ourselves. Amen

Matthew 25:34-40 (NIV)
“Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?’

“The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’

Posted (jooosh) in All Posts on January-27-2009

Yup…Tina is in the BIG state of Texas vising her friend for the next 4 days. I can’t even begin to tell ya’ll just how stinkin’ excited I am for her. Tina deserves this break so much. I’m glad that she can take advantage of it.

My company has been great to let me telecommute while she’s away so I can switch shifts with Kelly in the morning and evening, without the overhead of a commute (Thanks L.S.!).

Surprisingly, Ella slept well through the night and to cap it off she had a good day. I can only hope and pray that she keeps this behavior up for the next few days as well.

With Ella’s good day comes a lot of good pictures. Below is the extensive collection for your viewing pleasure:

“Yay…a clean Bun!”

“Yeah…I know it’s a camera”

Maybe if I play possum they’ll stop making me work

Yes…I’m even cute with a pitiful look on my face

“One, two, free”

“See, you put your fist in your mouth like this”

“Now you try it bear!”

“Can I help you?”

Hmmm…let me ponder that with my finger in my mouth

“Yeah…I heard that mom is out of town”

“You sure you can handle this Dad?”

“How long is she gone for again?”

“Whew…ok…I think we can make it together for four days”

“Don’t worry dad…I’ll be good”

“Look into my eyes Froggy”

“Yeah…I know you tricked me into sitting up”

“So you think we can take a break?”


All this working out messes up ones hair

Sitting on my own for a moment requires a little prayer

“Alright, I’ll hold your hands, but then I need to lay down for a bit”


A moment to catch my breath

Yup…I am the Bun!

“Hey, where you goin’ Super-Nanny Kelly?”


I wonder where she went

Oh there you are! Wait, what’s that in your hand…


Ok…so it’s really not that bad.

Peace out Ella Fans!

Posted (Tina) in All Posts on January-26-2009

So, did you know that Gymboree bubbles are the best? The OT asked us to get them for Ella, so Kelly picked them up this past weekend. Who would have thought that Gymboree bubbles would be superior? The bubbles are amazing. They last for hours. I came home and they were still intact all over the room. Ella thought they were interesting and fun to look at from afar.

Another tool from the OT to help desensitize Ella is placing her in a bath tub with pinto beans. Sounds strange, but is a handy trick. We’ll see how she responds as the days pass.

Although still a lot to overcome, Ella did good with eating today. The OT recommended to not wipe her face when she is eating. She doesn’t like eating much less having her face wiped. So to limit the frustration for Ella, only wipe her face at the end of the feeding session, thus the messy face photos.

Tomorrow, I am headed off to see my best friend to hang out for a few days. Kelly and Josh were gracious enough to give me a break and offer to look after Ella, write the blog, etc. I am looking forward to a few days of “girl time” and full nights of sleep. I pray that Ella will sleep at night for Josh. I know how hard it is to get up several times at night and then function during the day. It can be done, but is challenging.

Ella has a renal ultrasound and upper GI study scheduled for Feb 4th. We’re hoping that the renal ultrasound will show the nephrocalcinosis has improved. Also, that the upper GI will indicate that her nissen is still intact. It would not answer why she has been retching so much, but it is a concern we have right now since she is retching just as much as last summer when she had re-herniated.

I have not heard back from her pulmonologist about scheduling her SVC procedure. Hopefully, we will get an update soon.

In the meantime, we love to capture the smiles and share them with you each day.

Psalm 5:11 (NIV)
But let all who take refuge in you be glad;
let them ever sing for joy.
Spread your protection over them,
that those who love your name may rejoice in you.

Posted (jooosh) in All Posts on January-25-2009

A year ago today Ella left the NICU at Shands. Click here to flash back a year ago and see how far Ella has come.

We’ve had quite a few trips back to the hospital since then, but at that point, she had officially graduated the NICU.

Today was filled with laziness and smiles. Sounds like a good day to me =).

Thanks for all the love, support, and for keeping up with the Bun.

Posted (Tina) in All Posts on January-24-2009

Wow, today is a monumental day for a couple of reasons.

Today, Ella is 18 months old. It is amazing to see how far she has come in her short, little life. Below are pictures from one year ago. It is also her Grandma Eusey’s birthday today.

We’re just thankful to have the Bun in our lives. She is definitely a little miracle that continues to fight and overcome her obstacles. We have so much to learn from her, as she flashes her smile each day. She has blessed our lives beyond description and we wait in anticipation of the plans that will unfold for her life in the coming days.

Colossians 4:2 (NIV)
Devote yourselves to prayer, being watchful and thankful.

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

Today was good for Ella.

She was in an amazing mood. For the first time in weeks, she slept solid last night until 7am. That is so rare! Maybe she just knew that I needed my beauty sleep too! Actually, between her sleep last night and her overall mood today, it was a strong indicator that she is feeling good physically.

It is so much fun to be around her when she is happy. These types of days are rare for her, so when you have them, they stand out and just help to fuel for the other days. She responded better to eating today as well as physical therapy and for the most part, was just happy and smiley all day.

We’re so glad that the weekend is here to enjoy as a family. And we can only hope that she is on a streak and will continue to sleep well and be smiling tomorrow.

Psalm 63:6-8 (NIV)
On my bed I remember you;
I think of you through the watches of the night.

Because you are my help,
I sing in the shadow of your wings.

My soul clings to you;
your right hand upholds me.

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

We got in the car about 1pm today and Ella was excited for the change of scenery. She was in a great mood!

Once we arrived at the Children’s Hospital, we went to the outpatient blood lab. That is my least favorite part of the entire field trip. They were able to draw her blood successfully from her inner arm. She cried hard but the pain was over in a matter of moments.

When we walked out of the blood lab, I stayed nearby to wait for Josh. He met me at the Children’s Hospital, so we could go to the doctor appointment together and discuss our current options. Once he came around the corner, Ella smiled so big. She recognized her Daddy…it was cute.

We went upstairs to pulmonology to wait for our appointment. We visited with Megan who works at the check-in counter. She is always so sweet. We love seeing a familiar face when we go for our pulmonology appointments. Megan noted how happy Ella seemed today. We were all having a great time with her.

Once routed to the exam room, she weighed 8.9 kilos. She weighed 9 kilos on the scale from the home nurse the other day. So that was good weight gain. Some of it might be fluid, but clinically, she is on 1 liter of oxygen and seems to be in a good mood.

Several things came out of our appointment today:

1- Increase in her diuretic (aldactazide) to 2ml or 10mg, twice per day. This was basically adjusted for her increased weight (maybe this is why she required Bumex sooner than 2 weeks).
2-Start potassium-chloride supplement, 3ml once per day
3-Follow-up with labs next week to assess how the additional diuretic and potassium-chloride supplement is working.
4-Prescription for Kenalog to help minimize and control granulation tissue around her g-tube.
5-Call to schedule a follow-up ultrasound renal exam to assess her kidneys and whether the nephrocalcinosis has improved or worsened.
6-Call to schedule a follow-up upper GI series to assess her increased retching.
7-Discussion of the SVC procedure (more details below)
8- Another follow-up visit in 7 weeks.

The other day, I called and left a message with Dr. Fagan (cardiologist) to ask about the next steps for getting Ella into the heart catheter lab. Based on my phone call, Dr. Abman was contacted. This gave them a few days to discuss before our appointment.

So when I brought up the subject with Dr. Lysinger today, he welcomed the conversation as it was already a discussion point for him and Dr. Abman. My curiosity was peaked. We asked the Lord for clear guidance on the next best steps, so what were they going to recommend?

Fairly quickly, he summarized their position: they think we should go ahead with the procedure and try it. There is no guarantee that it will fix her fluid issues and there is risk with any procedure, but from a long-term perspective, Dr. Fagan thinks the risks are minimal and it is not a bad thing for Ella to have her SVC open. Dr. Lysinger noted that he would get together with Dr. Abman and Dr. Fagan and begin to coordinate the procedure. We expect to hear from him in the coming days although we are not sure of the timing or strategy for the operation (admit her to the hospital beforehand or only after the procedure, etc.).

We’d like everyone to help us pray for a miracle for Ella. The liklihood of Dr. Fagan being able to open her SVC is not high since it is so occluded (about 2.5 inches on her chest xray). He is the one that told us this fact, but he is still willing to try.

So we’re praying for a miracle: a successful procedure and that will open up doors for Ella. She has suffered with this fluid issue for a long time and we would really like to see this area improve for her. We’re hoping that this might be a big relief for her little body. Please join us in prayer over the coming days.

Luke 11:10 (NLT)
For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.