Posted (Tina) in All Posts on June-2-2009

As a new twist, we started this morning in the bath. In order for this to work, I make sure that I have at least one cup of java in my system. The experience can go good or bad. I need the coffee to make sure I can be alert and respond appropriately.

Once I coax Ella into the idea that it is time to start the day and she is smiling at me, I introduce her to the bubbles. Today’s bath was good, better than the one the other morning. Reflecting back, I think it might be the best time. She has had the most sleep and is more tolerant of something she doesn’t think is “that great”. Of course, I’m hoping that bubbles become a great treat for her, just like they can be for me.

The OT session today warmed up with feathers. Then, we graduated to pinto beans and rice. Ella let the OT work with her for 48 minutes non-stop. The OT was really pleased with how much Ella tolerated her touching her face, cheeks and lips. Also, Ella did pretty well with the z-vibe on the vibrate mode. All of this tactile stimulation that will gradually help Ella to eat someday.

Once Ella had some beauty sleep, it was time for physical therapy. Along with tummy time and the more recent weight-bearing exercises, they tried rolling over across the carpet today. Back and forth, back and forth…all in an effort to reinforce the moves necessary for Ella to do this herself from her belly to back.

Ella’s weight actually decreased a bit this morning. She is maintaining small fluctuations around 11 kilos (24 pounds). I just know that the volume of food needs to go up, but we need to be patient! A week from today, we will be heading to the Children’s Hospital and getting a better idea concerning next steps.

On a personal note, this passage really stood out to me today, especially as I am exploring next steps for myself:

Romans 12:6-8 (NLT)
In his grace, God has given us different gifts for doing certain things well. So if God has given you the ability to prophesy, speak out with as much faith as God has given you. If your gift is serving others, serve them well. If you are a teacher, teach well. If your gift is to encourage others, be encouraging. If it is giving, give generously. If God has given you leadership ability, take the responsibility seriously. And if you have a gift for showing kindness to others, do it gladly.

One gift that Ella has is that amazing smile. It continues to melt my heart each day.

Thanks for all the thoughts and prayers as we continue this journey with our miracle baby girl.