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.