Friday, October 23, 2009

Waiting at Children's

On Wed, Taylor and I had to go to Seattle Children's Hospital for her MRI and other pre-op apts.
We were there for 7 hours and did not leave until 6pm.
She did amazingly well and i had walked her through everything we would go through. She picked Bubblegum flavored gas and actually it was at nap time so had fallen asleep so it was easy to have her out. It took about 30 mins for the MRI and then because it was nap time it took about another 30 mins for her to wake up.
She is maturing and we can see it how she handles things like this.
She actually is wanting this surgery and asks daily how many days until her surgery and we talk through what they will be doing, We now have diagrams made from the CT scans of her body - so it is amazing at what they will be able to do.
There is over 50% chance this will finally give both lungs a chance to fully develop, allow for protection of her other organs, and allow the stomach to be properly attached for long term support. As she grows there most likely will be other deteriation and this will support her and also physically give her uniformity of her chest for a girl this is also important as she grows into her teens. Many have lots of surgeries to acheive this as late teens. This is not why we are doing it but it is an added plus to help her emotionally as she faces those tween times which are not easy for people who have PS. I am on many of these peoples groups and the daily stories of the struggles they have faced with no support or medical help is sad to see - we now have hope for many of them. Thankfully Taylor's hand was not webbed, since that usually results in many surgeries as well. But we already have noticed her thumb is becoming lose and may require a surgery down the road.
With Poland Syndrome there is so many unknowns and like with our Reagan and Cleft L & P there are many degree's of the condition and different positions to take.
We after lots of research and a year working towards this day (Nov 2nd) and talking to others who have had a similar surgery to this - that this is what is best for Taylor. She is very active and i believe this will allow her to confidently plan in sports which she is definitely leaning towards. We never want to hold our kids back from becoming the best they can be. We are so thankful for being able to have this and that Seattle is the leading hospital in the country in doing this kind of chest surgery.
Counting days with Taylor to "S" day
Lavonne 10-23-09

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