Sunday, February 26, 2012

Miracles Continue


Elizabeth continues to do well. She is super happy and smiles alot. Her appointment with ENT on Feb 14th, went ok, of course it would have been better if the news was great but at least it wasn't horrible. We know she has alot of floppiness in her airway, and they were going to decide on a plan to try and fix it. Elizabeth is scheduled for surgery on March 13th at Vanderbilt. They will take some of the tissue out of her airway, inject steroids in it, and use a balloon to dilate her airway. They will check it 3 weeks after the procedure and if it seems to have helped they will repeat it, and again in another 3 weeks. The Dr said 3 times would probably be the max he would do it, if it helps great, if not we will decide on another route. I hate that she is has to go through this, I know in the grand scheme of things this is a small thing compared to her other surgeries. But it still sucks. We are really hoping that it helps and they wont have to do anything more invasive to "fix" her airway issues. Other than that she is still doing amazingly well. She had continued to gain weight, she is now up to 18lbs 13ozs, still well below the normal range for age, but shes gaining so we will take it! Her anti-rejection levels have still been a bit elevated, so we have decreased her dose again, and will be doing labs more frequently until she is at a good level. She continues to get monthly synagsis vaccinations to prevent RSV, thankfully the season will be over in March/April and she wont have to get the shots and we can venture out more without the fear of RSV and Flu.

  She is still making progress with therapy. Still no crawling, walking, or talking (other than the occasional momma, dadda, or bye-bye). She still has no desire to eat by mouth. But, she is moving around alot by scooting on her back to get to her toys. She babbles alot, and seems pretty content. Any progress is great, and we will take whatever she is willing to give! We are planning to add speech therapy within the next few weeks.

 The weather was really nice a few days last week here,  but was it was super windy. I took her outside just to sit on the steps at our house. It was so sweet to see her reaction to the wind. She would make the cutest face, and snuggle up close to me, then she would laugh and smile about it.  It really is the small things that mean SO, SO much. And I am so thankful that I am able to share in those moments with her. I remember this time last year, when I worried we would never make it to this point.

We continue to be amazed at her progress and her love of life!! Everyday we are thankful for her and the lessons she is teaching us. Its so easy to sometimes get caught up in the "downside" of things and how different our lives are, and the constant what ifs of her future. But different WITH Elizabeth is the only life I want to know!  The what ifs keep me in check and are a constant reminder to cherish the gift of her life.


~We recently (I know late) had some pictures taken for her 2nd Birthday, I posted a few of them below. LOTS of thanks to Boyd&Olson Photography for their awesome work! And my friend Amy for the amazing cupcake!! :) ~




1 comment:

  1. these pictures bring a smile to my face and heart. she is beautiful!! how long will you have to stay when she has her surgery? What can we do to help? Mary Lee Carrigan

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