This is a poem that we found through our Yahoo Group.
On my way from Heaven, God delayed my trip that day.
He said that I was special, and then sent me on my way.
But not before He kissed me, right upon my ear.
He left his blessed mark to carry with me here.
He whispered in my ear right then, that He loved me without a doubt.
And then He closed my ear up tight, so the whisper won't get out.
He told me both my legs were strong and would help me stand up tall.
He told me both my arms would work to catch me if I fall.
My eyes would catch my memories to store within the pages of my mind.
My heart would fill with all the things I would love, so many things I would find.
He told me I could fall asleep to my Daddy's bedtime tales.
And listen while my Mother sings of seas and boats and sails.
One ear, He told me, could hear the sounds that little birdies make.
The other ear was his gift to me, a blessing for my sake.
For when I'm feeling sad, he said, my other ear would hear,
His whispered words of eternal love, left waiting for me there.
Monday, December 8, 2008
Lauren celebrated her 4th Birthday today!! She was very excited and has been talking about it for weeks. We had a family party for her and she spent the day at Jungle Jim's Playground. She is very much a daredevil and loves to go on all the rides. The bumpier the ride, the more she loves it. It will be a big year coming up for her. It seems unfair that she has to deal with something so extensive, but I really believe she will get through it all. There will be some big milestones for her this next year. I am not sure what she used for her birthday wish this year, but I know her mom and I both wished for the same thing.
Sunday, November 9, 2008
Over the past few weeks, we have been getting prepared for the atresia surgery. We decided to schedule the surgery for the end of January. To do so, they wanted to know if Lauren will be able to have the anesthesia that they use for the surgery. If not, they would have to use an alternative method and the surgery would have to be done at another location. The doctors wanted to do an X-ray of Lauren's spine and throat to make sure there would be room for a tube they use for anesthesia. They found she had some vertebrae that were not fused as they should be and another that was fused when it shouldn't have been. All this is probably due to her Goldenhar's syndrome diagnosis. After further tests and doctor's review at Primary Childrens Hospital, they found that it should not cause her any future problems. The Doctor said that many people have this same kind of diagnosis with their vertebrae and they don't seem to suffer any problems with it. So now, we are just trying to plan how we will travel and where we will be staying. We may have to stay there for a week for the atresia surgery. It will be a long year in 2009 and we hope we have made the right decisions for her.
Sunday, October 12, 2008
This weekend we were able to attend the Microtia/Atresia conference in Palo Alto, California organized by the "Let Them Hear Foundation". The conference consisted of two days. Saturday we spent the morning at the Four Seasons Hotel where we were able to listen to presentations given by some of best medical professionals in the field concerning Microtia and Atresia repair. Those that presented were Dr. Reinisch, Dr. Lewin, Dr. Brent, Dr. Choe, and Dr. Roberson. The purpose of the conference is to educate the families of the different surgery options that are available. They do an excellent job of giving us detailed information and as parents it really helps us in making an informed decision and trying to find out what will be best for Lauren. The following day each family was scheduled to meet briefly with any or all of the doctors from the conference. This was our first face to face meeting with many of them and it allowed us to ask questions specific to Lauren's situation. It also gave them an opportunity to evaluate her condition. All in all it was a great experience. It can be extremely overwhelming to see what lies ahead, but it is wonderful to have a resource like that and to have your questions answered. Although meeting with the doctors was helpful, the greatest part of the conference was meeting the other parents and children that attended. There were families from all over the world that attended. Even though we were only meeting each other for the first time, it didn't take long to build long lasting relationships with them. It is strengthing to meet other parents that have the same questions we have had and it was and incredible experience for Lauren to meet other children with the same condition. We are thankful for all the other parents and the support they provide in the group.