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

Yes, the dense food was the culprit: it was making things over-the-top horrible for Ella. Thanks goodness we figured that out! Ella still woke up throughout the night, but maybe only 10 times versus 15-20. Plus, when she decided to finally get up this morning, she flashed me a smile.

She is still whining a lot throughout the day, but did sit up on her own for 12 whole minutes. We are all convinced that the constant whining is due to teething. The top 4 teeth are working their way through her gums: only one has been successful right now. She always has her hands in her mouth and is drooling a lot.

Our big excitement for the day was going to visit Dr. Perry, her pediatrician. We caught up on everything that has happened with her since early January. He thought she looked great. Ella sat up on the exam table on her own for a few minutes to show Dr. Perry her latest sitting up trick she’s learned. She was smiling and seemed more interactive than he remembers ever seeing her; that made him happy.

Dr. Perry was able to take care of some g-tube maintenance that Ella needed (burning off the granulation tissue). Ella was in a great mood until he went to examine her mouth and take a look at her teeth. She had a major meltdown and then proceeded with her normal whining that she has been doing. He confirmed that it is likely her teeth. Fortunately, he had a sample of Children’s Motrin and told me that it might be more effective than Tylenol (Tylenol didn’t seem to make a difference for her). So, we are going to try it tonight and see if she sleeps better. He also mentioned that after tonight we will have to cease until after her SVC procedure since ibuprofen can thin the blood. He also asked that we keep him updated on the SVC procedure next week and how she does.

Aside from that, he had 3 recommendations: he thinks that we should ask the pulmonologist again about discontinuing the Prevacid as well as her inhaled Flovent treatment. He agreed that her chronic cough is probably tied to the Captopril and isn’t convinced that either one of those meds is gaining her much. Finally, he recommended that we ask the pulmonologist about a fluid increase in her food since she is not gaining weight any more and cannot tolerate the 28 k/cal formula. We plan on going back to see Dr. Perry towards the end of March.

Ella’s other new trick this week: grab her oxygen cord, pinch it off and place it in her mouth like a teething toy!

And last but not least, we want to rejoice with the Bassett family. This family traveled all the way from Dallas to give their baby girl, Olivia, the best chance at life under the care of Dr. David Kays at Shands at the University of Florida. Her case of CDH was severe, but after 3 months in the NICU, she is being released to go home tomorrow!!! We’re so happy for them and wish them the best as they make their way back to Dallas and continue their life with the twins!

Part of my devotion this morning urges us to pray in this regard:

God, despite my circumstances, I will find reasons to praise You.

God, even when I feel disappointed by what life brings, I will trust You to bring good out of bad.

God, no matter what, I will hold on to You and Your truths.

God, my deepest desire is for more of You in me. And if that is the desire of my heart, I will never be disillusioned.