Happy 9 year Cranioversary!!!

 

Happy 9 year Cranioversary!!! We started this surgery journey 9 years ago and in that time she has had 11 surgeries.  I find myself rereading almost every blog on this day every year.  It brings such a wave of emotions.  Even though this journey started on the day she was born it just really hit hard on the day of her first surgery.  It made everything more real I guess.  

I know a lot of people have been wanting an update on how she's doing. I have just been waiting and waiting because there really isn't anything to report.  She is  over 2 months post op  from her 11th surgery and she is still recovering, we are just so frustratingly close to seeing if the skin has grown in under her scabs.  What we can see now is the edges look good but we just don't know what is going on in the middle underneath.  She was on antibiotics for 9 weeks and we finally got to stop those about 3 weeks ago and it is doing great and no signs of infection (knock on wood).  Below are some before and after pictures now that her swelling is completely gone.  There is a HUGE difference!! Although it is hard to see her sweet face changing from each surgery it is what is needs to be done to make her life better.  

She is doing great in school and just so happy to be back.  She got a little behind while she was out those 2 months even though Mom tried her best to teach common core math, it just wasn't the same as being in school.  I was sure glad they sent YoutTube videos for us to watch so we both could learn the steps. She always tries to do her best and that is what matters.  

She has been cleared to do pretty much everything but swimming.  She has started to do snow shoeing/cross country skiing with her special olympics group.  The ski boots hurt her feet so she likes to do snow shoeing.  She has been out on her snowmobile of course and loving it.  

It is just a hurry up and wait situation.  So hopefully the next blog I post will be that we are on the other side of this and moving on to what is to come next.  Until then we will keep doing what we have to do and try to have fun while we do it.  

This girl is so amazingly strong and brave.  We just take the lead from her and keep on moving forward.