Happy New Year!! I am so sorry it has been so long since my last post. Life runs by at an astonishing pace, especially this time of year. Let me try to briefly update you because I am sure your life is just as busy!
Grace's cleft team called us in early December with an offer to have her surgery done on December 20th. We were surprised because we had been told it would probably be several months unless they had a cancellation. We jumped at it, even though it was so close to Christmas, because we want our girl to have the best opportunity at gaining intelligible speech before she starts kindergarten.
I was able to walk her back to the operating room and she was out pretty quickly. Children's does a great job of trying to minimize the stress on the kids as much as possible before a procedure. Surgery took somewhere over 4 hours and then we were able to talk to her surgeon. Unfortunately it went less than ideally because of problems resulting from her surgery in China. It appears that they did try to repair her palate in China, and severed or partially severed one of the arteries that supplies blood flow to one side of the hard palate, thereby rendering part of the palate dead. The other side was retracted and tightened. The were not confident that the palate would hold together, and it has not, completely. There were three levels of repair, a nose level, a donated tissue (aloderm) level and the roof of the mouth level. It is that last level that is coming apart. So it is not open all the way to her nose as it was, but it is not ideal. We are praying that it will close itself, which is a possibility, over the next three months.
The good news was that they did not touch the soft palate in China, which is the more important part of the palate. They were able to simply stitch that closed. They were not able to do the musculature work on the soft palate as they had hoped, because the rest of the surgery was so difficult. We will be back in about 3 to 4 months for them to do that repair and to perhaps fix the holes that have developed in the hard palate.
In case you are wondering, "Did they know that they would need to do all of this??", the answer is that we were prepared to do whatever it took to help this sweet girl become physically whole and well. It truly was a blessing to be there for her after her surgery...in a way I can't fully explain. She was hurting and scared and we were able to love her completely and undividedly. She went from a girl who had no one to call her own, with no one to "have her back" to a girl with parents completely devoted to her well being, comfort and healing. Thanking Jesus that He let us be those parents. As scary as it was, it was also truly sweet. Seriously.
Christmas was sweet but subdued. I'm not sure we understood just how long the anesthesia would affect her personality. It took a full ten days for her to regain her sweet, cheerful self. It was a difficult ten days as we tried to figure out how to help her be more herself, and then, on Saturday, the clouds lifted and she was herself again. We were so relieved!
Her language continues to explode, and some of it is more intelligible since the palate surgery, which is nice. Other sounds will clearly require some concerted effort to teach, learn and make!
Life is good. We are blessed. Some days are easy and some difficult, but we trust that we are walking in God's grace, especially during the difficult days.
If you've been following the blog and know the story of Shelley and her daughter Hope, you can be praying for them. Her catheterization is happening on the 4th of January. This will give them a more complete picture of her heart and the steps that can/need to be taken to help this sweet girl.
We are so blessed to have so many friends and family in our lives who have cared for us over the last months/years. From friends who cooked meals and brought us clothing and toys, to friends and family who watched the boys while we were in the hospital, to one very sweet friend from high school (and her sister in law) who made us the object of a special giving campaign this Christmas (that was awesome and unexpected!!), we want to say Thank you! We love you! and We wish you a very Merry Christmas and Happy New Year and a 2013 filled with purpose!
