Making Thumbs

I'm thankful to be able to blog.  Not only does it keep our friends and family up to date, but it helps me organize my mind, which these days is a crazy mess.

Yesterday Matthew, my dad and I went to Dallas to talk to a hand surgeon at the Texas Scottish Rite Hospital about making some thumbs for Matthew.  I know it was a bit silly to go to the appointment given that Matthew's dance card is full of more serious issues. But I needed to go, to think about making Matthew's quality of life better when the time is right...to be hopeful.  

Matthew is a good candidate for pollicization, where they can repurpose Matthew's index finger to position and function like a thumb.  The surgeon described the surgery as 'beautiful', typically 3 hours, with a day hospitalization.  The doctor recommends doing it when the child is around 2 years old.  So, when Matthew's cleared by the long list of specialists, we can call and get on the schedule for the surgery.  It was a nice, hopeful day. I enjoyed the road trip with my dad, which I haven't done in probably 30 years. 

Unfortunately yesterday I had to call cranialfacial to let them know Matthew isn't cleared for the skull surgery.  The November 1 surgery has been canceled.  When Matthew is cleared from cardiology, cranialfacial/neurosurgery will reschedule the craniosynostosis surgery.  It was a hard call to make.  We are sad that he won't be ready and worried that his brain continues to grow rapidly in a skull not ready for it, but we know this is for the best. We are no longer playing beat the clock to figure out the heart issues.  Knowing it in our heads doesn't make it easier on our hearts. 
 
So, now we wait for the cardiologist appointment to find out our next steps.  Until then, we will enjoy the beautiful days with our 3 kids and live in the moment. We are so grateful to our family and friends that have reached out to us, lent an ear, sent a note of encouragement, lifted Matthew up in thoughts and prayers.  Thank you!