Thursday, August 2, 2012

11 weeks into the journey

Lydia has taken to doing sit ups - not in athletic style, but in her own style, of lying down, sitting up, then lying down again.  She performs this sequence repeatedly!  Her core muscles are strengthening, and she is able to sit up on her own - a bit of tottering, but not too much.
Today the Occupational Therapist gave us the go ahead to begin feeding Lydia small amounts by mouth.  Previous to this, all tastings were very small amounts, and given by therapists who monitored Lydia closely to be sure that she swallowed properly.  Tonight I gave her some sweet potato puree, and she held the spoon in her right hand and put it to her mouth, cleaned the spoon off with her lips, then tucked her chin and swallowed!  What progress she has made with this in the last week!  Now that we have permission to feed her small amounts, (5 teaspoons), we will try to do this just before every daytime G tube feed.  We have heard that once the muscles strengthen, with practice, eating becomes easier and easier.  Just like a baby, after purees, Lydia will graduate to mashed food, to more texture, to chewing and eating well independently.  Hooray!  Maybe Lydia will be able to have turkey dinner with us at Christmas!
Lydia gave me a great smile, and looked directly at the camera tonight, when I told her I wanted to take a picture for Daddy.  What a beautiful moment!  She is increasingly more alert and responsive.
It is hard to believe that 11 weeks ago today, our lives changed.  I looked back in my journal today, and read a page entitled: Blessings in this Journey: moments of beauty.  Here's the list from June 30.

  1. singing and worshiping
  2. seeking and finding refuge in God
  3. smiles we have received from Lydia
  4. the kindness and generosity of friends and strangers
  5. hearing from the Word of God - it is living and active
An updated list would include:
  1. Lydia's smiles, laughter and playful nature.
  2. Increased understanding and ability to follow simple commands.  
  3. Progress in physical movement - holding a toothbrush, feeding herself, sitting up, rolling over, standing with assistance.
  4. Broad smiles when she enters the therapy pool, and floats with assistance.
  5. Moments of great clarity where she looks at you deeply, and you feel seen.
  6. Smiles and delight when she sees her brothers, cousins, and family members.
  7. Increased alertness for longer periods of time.
  8. Moments of vibrancy.
At the end of this day, Lord, we thank you for the progress that Lydia is making.  We look to you to provide all that she needs to continue to recover.  Be her healer.  Be near.  Return her to us in fullness  of life.