Sunday, May 1, 2011

Tenacious D

My sister-in-law Kelli likes to call Delaney, "Tenacious D". I must say I get a kick out of that everytime I hear it. Certainly, it is a very fitting nick name (although we will hope that the profanity associated with Jack Black's musical duo is well off into the future). Some of Delaney's tenacity shows itself physically. Today we saw a few more examples of just how true that is.

During a visit of some of our friends and relatives today, there were some subtle and not so subtle movements. One of those movements I have been deeply concerned about is that of her vision and "tracking", and we were pleasantly surprised by the slightest bit of eye movement. She appeared to make an effort to shift her eyes. All this time we have seen her pupils responsive. At the hospital they were a bit slow, but now they have picked up a little steam. Certainly a far cry from what we witnessed weeks ago, but I wasn't sure I'd see those beautiful baby-blues move ever again. Still, we are hopeful for the blink response to come back and that may in time, but this is wonderful.

The other was seeing evidence of her being able to lift her own head up. She occasionally has arched her back and flexed those muscles but today she seemed to lift up her head independently of the rest of her body. She probably had her head slightly off of cousin Toni's chest for a handful of seconds. Again, very subtle but extremely reassuring to see. Warmed our hearts.

Lastly, there were two related areas that seemed to be gaining strength. After a long nap today she appeared to have a decidedly stronger yawn. It was so cute to see, and harkened back to the early days after her birth. Along those same lines was a sneeze, sort of "incomplete" but it was definitely on the right track. A kind of messy mix of a cough and a sneeze but clearly something is happening. Not that ever-so-cute cartoonish sneeze that we caught on video last month, but I'll take it. (View here: http://www.youtube.com/watch?v=ZIuMDohqF5w&sns=em)

You can say that these little movements are the very beginning and while they are subtle and incomplete, I will never scoff at a little gain...especially by our little Tenacious D

In other news, I'm making my stay at home an official long term assignment and will be turning in paperwork to enact the Family Medical Leave Act. I will stop at nothing to help my daughter regain her strength and grow healthy, to replace those lost abilities. This is the most important job I have ever had. I wouldn't dream of being anywhere else while she is enaged in this battle, this war, which is the fight of her young life.

We will be spending our time easing her pain, and learning everything possible to put her in the best position to win. We can't do this alone, and we have been overwhelmed with the generosity of our dear friends making it more possible for us to maintain our strength.

Please continue to pray for our whole family, and those who support us, to do everything we can to help our sweet, beautiful, Delaney Rose. I have seen amazing things happen in my life, and her birth tops them all. I know she can overcome.

Love,
B & L & d

1 comment:

  1. I wanted to say that reading your story is inspiring and moving beyond words. Your faith in God, your daughter, and yourselves is astounding. Delaney is lucky to have parents like you. My older sister was born very ill, and my mother was told that she would not live. Today, 27 years later, she is happy, healthy, and engaged to be married next year. I too believe that miracles do happen, and I will continue to pray for you and continue to hope and have faith for your daughter. You may not have all the answers, and neither do the doctors, but God is watching over you and Delaney every second of everyday.

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