Posted (Tina) in All Posts on April-3-2008

Ella’s day was pretty routine.

Unfortunately, she did not sleep great last night. So, we played the dance from 4:30am forward. That did not put me in the greatest mood this morning. Josh was great to “deal” with me.

Man, sleep is a great thing. And not getting it consistently really hurts. I know I need to get used to this idea. But I am already dreaming of the day when I can sleep 7-8 hours solid without interruptions.

She took from the bottle a few times, but didn’t come close to her prior records from earlier this week. That’s okay because we did have some good physical therapy time. One of our tasks is sitting up in her chair. She was able to sit up in it a total of 30 minutes between 2 sessions. That is really good for her!

She was so happy today. It was easy to make her smile. That definitely made the day more fun.

It looks like she is gaining weight, especially in her face. Again, we don’t know for sure but it sure seems like the corn oil might be helping. We won’t know until we take her back to Dr. Kays on April 22nd.

We hope that she is not gaining “bad” weight (weight gain from fluid retention). This type of weight gain is slow and creeps up over weeks of time. So far, we have not seen any negative indicators (saturations and heart rate are still at her baseline).

I had a good initial call with the Children’s Hospital of Denver, as far as researching the best doctors for Ella. I have found a cardiologist and a pulmonary doctor that have experience with CDH, with a specialty in pulmonary hypertension. Since Dr. Kays repaired her missing diaphragm, pulmonary hypertension is her biggest symptom moving forward. Apparently, the Children’s Hospital has a top-rated program for pulmonary hypertension, so that is comforting. The contact I need to work with is on vacation, so I’m hoping to make more progress next week. Ideally I am trying to set up appointments for the week after we arrive in Denver, so the new doctors can assess her right away.

We are still finalizing the details of making our way back to Colorado, but it is looking like the end of May, likely Memorial Day week. We will share the details as soon as we iron everything out.

That timing is a blessing because I took Ella out for a short 15 minute walk this evening around 7:15pm and it was hot and sticky. Already, the hot, hot Florida weather is kicking in. Rain, humidity and mid-eighties and it is only the first week of April. I think it will be good timing to leave by the end of May, not just for the heat but also to avoid the hurricanes.

Please pray that all the details of our move with come together. Also, that the appointments with the doctors we want will come to fruition (the best doctors that I found for Ella typically don’t take new patients).

Lamentations 3:25
The LORD is good to those whose hope is in him,
to the one who seeks him.

Kristen on April 3rd, 2008 at 8:45 pm #

Even if the practices are “full” who could resist the Bun! 🙂 Praying for all the doors to be open!

The Rainey Family on April 3rd, 2008 at 9:15 pm #

We are happy to hear that you are able to plan moving back home. That is wonderful news. We will be praying that the right doctors will be available to Ella in Denver. Good luck!! She is so adorable!!

Barbara Mullins on April 4th, 2008 at 4:03 am #

I get such a kick out of Ella’s expressions. She sure likes being in front of the camera. Maybe someday she’ll be an actress – she’s halfway there! Such a cutie! I was looking at your map of love – it’s unbelievable; you’ve nearly got the entire United States covered. Now THAT’s what I call payer cover! BTW I seem to remember someone who emailed you and mentioned a pediatric CDH specialist in Denver – or was that just my imagination? Still praying for y’all and am rejoicing in the great progress Ella is making. God is VERY GOOD!

Barbara Mullins on April 4th, 2008 at 4:04 am #

Oops – that was “prayer” cover. Although having “payer” cover might not be too bad either!

Evelyn & Robin Stiff on April 4th, 2008 at 8:46 am #

Dear Christina,Josh and Ella
Thanks for the call. Our Prayers are with you and Ella. May God’s love, healing,protection, and grace never leave baby Ella, Love and wisdom always to you and your whole family. Come home soon!

Chambers Family on April 4th, 2008 at 9:29 am #

Cute Cute Cute! Remember that Dr. Kays is pretty powerful in the medical arena and I have learned recently, that a doctor can make a phone call and get you into places that don’t take new patients. You have experienced that first hand with your pediatrician. We are so excited for your departure and arrival. God Speed as you continue to move forward in every way.

Ani on April 4th, 2008 at 9:51 am #

I love the pictures you guys are posting…Ella is the cutest thing ever…Miss you guys!

Joel Snyder on April 4th, 2008 at 11:11 am #

Ella, I just returned from your house in Lone Tree and all is well. I am glad to hear that you are feeling O.K. you could help Mom a little bit with more snooze time. I will check on you later. Love,Grandpa!!!!!!!!!!

John & Estela Williams on April 4th, 2008 at 12:46 pm #

Can’t wait to have you all over for a nice dinner, coctail and lots of loving. Love and miss you guys!

Post a comment

Name:  (required)
Email:  (required)