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

Today was a heavy day of therapy, but I’m proud of the Bun. She did well.

First, we had occupational therapy. Right when the therapist walked in, Ella was recovering from an earlier melt down. I did not think going over to the mat would set the tone. Plus, I wanted to try and preserve Ella’s energy. So, we opted to conduct the session in the pack-n-play. It worked well. Ella tolerated a lot, much more than normal. And she actually liked the gel in the ziploc bag because it felt so cool to the touch and she was hot and sweaty. It does look like another type of spa treatment, so maybe we’ll just let her think that she is getting the utmost in luxury pampering.

By the time physical therapy arrived, Ella was a bit tired and laid next to the therapist for about 15-20 minutes. Then, we were able to get her to sit up and do some work. She was excited and making more noises than normal, including “sssss” and “ththth”. Again, she did not exhibit the energy level of previous sessions but it was a huge improvement over what we have seen the past 3 weeks. Maybe she is just getting too tired between the OT and PT sessions close together in the day, especially now that she works more during OT. We did modify the OT session this morning to require minimal physical exertion and therefore today’s PT session did go better, so maybe there is a correlation. The next few days will confirm or deny that theory.

Finally, speech therapy came late in the day just as a major thunderstorm started. There was tons of rain and hail beating against the house, making it difficult to hear. But we let Ella stay in her pack-n-play, watching “Baby Signing Time” and encouraging signing. In between having Ella practice the sign for “more” as I would pause and start the video player, we discussed some other ideas. One of them was to get a song from the Beach Boys called “Barbara Ann” and play it a lot in the background. Because Ella likes music, it has good rhythm and almost sounds like baby talk (“ba, ba, ba, ba, ba, barbara ann…”), she may try to replicate the sound if it becomes familiar enough to her.

We still did not hear from her pulmonologist. Thankfully, she has not had any major episodes with passing out which is good. She still loses her color quicker than before and we think there is room for improvement. Although when she is not upset, her O2 level seems to have stabilized, 750ccs during the day and 600ccs at night. Once again, more confirmation that we need to go slow and not undergo anything invasive at this time. Hopefully, we will get some news tomorrow.

Isaiah 40:31 (NIV)
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Joan and Steve Odell on June 24th, 2009 at 8:27 am #

Wonderful Ella, you are doing so many things and progressing well. You look so pretty — Hugs and Prayers – Steve and Joan

Joel Snyder on June 24th, 2009 at 3:43 pm #

Ella, A tripleheader OT,PT, and ST what a trooper. I am hoping and praying that you keep up the good work. I am looking forward to news from the Doc’s soon. I hope you are having a great day. Catch you later. Love,Grandpa!!!!!!!!!!

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