New "Normal" and a Cold

Since my last post Matt and I have both returned to work. So life is somewhat back to normal for us.  It has definately been an adjustment! Matt works day shift and I work midnight shift, so one of us is always here with Elizabeth. And I went back to drill for the Navy Reserves last weekend.  She has had numerous appointments over the past few weeks with hematology, pulmonology, physical therapy and occupational therapy.  We now sorta have a schedule down for her therapies and all of the equipment she needs has been or will be ordered this week. Elizabeth got her 1st dose of IVIG since being back home on Wednesday last week. She had to be admitted to the hospital for the day to get it done, we are hoping to have it set up to do in home by her next dose in October.  We noticed that she had a cough that seemed to get worse and on Friday we went to see her pulmonologist who did a viral panel. It came back as rhinovirus basically she has a cold, which in the grand scheme of things isnt the worst possible thing, but its still not good for her. She ran a fever on Friday night and was pitiful on Saturday and needed to wear oxygen all day to keep her oxygen saturation levels up. She slept alot on Saturday and yesterday seemed to be doing alot better.  Other than dealing with issues as they arrive with insurance, medications, and equipment life here is headed to a much more "normal" for us.

Its an amazing feeling to sleep in my own home, in my own bed and wake up at night and look over to see the most precious little girl sleeping in her bed next to me. Everyday I am grateful for her donor family, everytime I see her smile or watch her sleep I am reminded of just how important those "small things" are. I know her donor family would love to see those things happening with their child, I am so thankful to them for giving my daughter a second chance.