November 15, 2008

As I write this, Erin is going to sleep in her swing. It is a good way to end an extremely lousy week. She and I are home alone, as Sheila is driving to Bloomington to watch nieces Caroline and Megan play in the state girls volleyball championship game. They are absolutely amazing. I wish we both could go, but we don't want to subject Erin to the long drive.

She has made some progress this week with her right hand, thanks mostly to Priscilla and Sheila's diligent efforts to get her to continue to improve her dexterity. They have worked with her all week on reaching first with her right hand, opening it all the way, and holding various toys. At night, Erin has been noticeably tired from the schooling that Priscilla is putting her through. It has been a mixed bag, as over the week following the appointment on Monday (see last update) we have been keenly aware of her issues, but also seeing some improvement.

She is eating food now, having a bowl of oatmeal in the morning and a bowl of rice at night. She doesn't like the oatmeal, but seems to enjoy the rice. Watching her eat is a sight, as she gets the food all over her. She needs to be continuously distracted to get her to laugh and open her mouth to accept a spoonful, and Sheila and Priscilla have resorted to creating a dinner theater of pantomime and other skits to entertain her while she eats. It is hilarious to watch.

Erin's personality continues to grow by leaps and bounds. She is very outgoing, happy virtually all the time, and extremely expressive. The photo's have all been taken in the past week, and give but a small glimpse of who Erin is. One of these days I will get creative and post some video of her, when I have the time. There doesn't seem to be much of that these days.

Update - November 11, 2008

We took Erin to her four month NICU follow-up yesterday. The purpose was primarily to check her vitals, and to see how the stroke might be manifesting itself.

The concensus of the doctor and physical therapist was generally the same thing we have heard from the Early Intervention folks and physical therapists that we have seen. Her right side is just slightly less developed than her left. She tends to reach first with her left hand, and her left hand opens more easily than her right, which tends to remain clenched. However, and they emphasized this, it is a) too early to really tell much, and b) they are really reaching to come to these conclusions. The doctor said that her feeling was that 50% of the professionals that examined Erin wouldn't notice any difference between her left or right.

The other point that was made in the appointment was just how advanced Erin is, both physically and from a personality standpoint. She is outgoing, happy, and pushing the envelope in every way. When she is on her back, she tries to sit up with such intensity that you can see what a little fighter she is. It is probably one of the principal reasons that she is doing so much better than predicted.

It is hard to reconcile when looking at Erin and seeing how well she is doing that she has significant ongoing medical issues. Sometimes when the thought occurs it is jarring, because you can't imagine that she isn't perfect. It is especially difficult when you think that she has a long road ahead, and will most likely involve hospitalization, surgery, and physical therapy. But for now, she continues to be an amazing miraculous story, and we are thankful for every day.

Update - November 4

So guess what I am doing here? This will be a family classic!

Hey...try to keep up with me!

My new trick...I have feet.

Covergirl in training.

I was out of town when this was taken. In my opinion, child abuse! :-)

Well, a bad day for a capitalist! But a great day for a dad, who got to babysit tonight.

Erin is doing unbelievably well. She started eating rice cereal today, and consumed an entire bowl. She is eating well, playing well, trying to turn over and sit up, and taking steps when someone balances her. Her health issues are status quo for now. It is easy to forget when looking at her that life is tenuous for her. And when you remember the issues, it is hard. But for now, she is doing amazingly well.