Posted (Tina) in All Posts on June-17-2009

Today marks the beginning of our 100th week since Ella was born. She was born on a Tuesday, so when we started taking pictures of her and uploading them onto our computers and the blog, her birthday started Week 1. Tonight, we went to upload pictures and it is the start of Week 100. That is crazy!

It is also crazy to think that it is Day 693. We have so many posts and pictures of this child. I hope that this blog is a great gift to Ella some day.

Ella slept solid but woke up a bit earlier than normal. We took a walk this morning and enjoyed the beautiful Colorado weather. She was still sleepy, but remained quiet as we strolled the neighborhood. Then, we had fun reading her book together.

In the late morning, her session with the occupational therapist went well. The Bun was not as tolerant of the exercises, but we were still able to accomplish quite a bit.

She took a nap in between sessions and started physical therapy early in the afternoon. For the first 30 minutes, she was really fussy and became wet with sweat. The PT was very patient and decided to stick it out, to see if Ella would recover. Finally, Ella’s mood improved. It just seemed to take a long time. Ella still didn’t seem like she wanted to do that much work, but at least she stopped crying and fussing. For example, we usually place her laptop computer to her side to see if we can get her to bear weight on her arms to lean over and push the buttons. Instead, she was moving her feet to push the buttons! I’m hoping that tomorrow is better for her and we can get back to challenging her physically while having fun at the same time.

Our new babysitter came over again tonight for more training. Tomorrow, I will shadow her and see if we have left any gaps in her training. Once we are all set, it will be really nice to have someone watching Ella again and giving us a couple of much needed breaks each week.

Today, Ella came close to passing out twice. Although, she is still much improved over last week. Even the babysitter was surprised at what a difference a week has made for Ella. She had a chance to experience how fast she passed out last week and could tell a huge difference. I explained that Ella is not even at her baseline right now; there is still something that is not right.

We did not hear back from the Children’s Hospital today, but that is not surprising. Since her pulmonologist is traveling in Europe, we may not hear for a few more days. We’re trying our best to be patient and watch Ella closely for any subtle changes.

We just want the Bun to be better…she is such a cutie pie. And so flexible…who knew that toes could taste so good?