10.22.15 Big Deal

This is a really, really big deal! Are you ready to read it? Get ready. 

Aimee's insurance has approved her new wheelchair and, from what we can tell, every single little peice of it! You read that right. In a couple of months, she will have a brand new, completely paid for, fully supportive wheelchair. We are incredibly thankful and thrilled. This chair will be a part of her for the next 5 or so years.

It will certainly be bittersweet to move on from her first wheels, which are a symbol to us of our loving community and of God's faithful provision. That incredible experience 4.5 years ago will forever be etched in Aimee's life story and we will never be the same. 

However, Aimee has grown. Her needs have grown. Her smile has grown (beside the point, but still true). Her discomfort and distortion have grown too. It's time to move forward to new wheels. 

10.16.15 BAER

Aimee had a sedated BAER Exam today, which is to check her hearing as sounds are received by her brain. It was a very interesting experience on many levels. 

She has had this test done numerous times. It requires about 90 minutes under anesthesia and we get immediate results discussed with the audiologist. This particular doctor took extra time with Aimee today, as she repeatedly got different results for a particular pitch. After having another doctor review it with her, they made their best interpretation of the data, which was that her hearing in the higher pitches has decreased fairly significantly. Just like every other system, it seems that Aimee's brain/hearing connections are inconsistent. 

More interesting than this was Ed and I's interactions with all of the staff, especially anesthesia and nurses. Typically we have felt like we are trying to convince them that Aimee needs extra care. Today, we had several different experiences of conversations of risk, of them making decisions based upon our opinion, of their concern about the seriousness of Aimee's needs, of their awe about her central apneas, ect. A little terrifying to have the professionals worried, but also kind of wonderful. Finally! They are acknowledging Aimee and not just brushing off our concerns. Finally, they are taking her seriously and understanding that she doesn't fit the mold. Part of this, I think, is simply how much more savvy Ed and I have become. We knew the ins and outs of everything that came up. Ed even was able to make a suggestion to her anesthesiologist that made the procedure safer for Aimee and allowed her to recover faster. They asked me to be in the PACU the whole time with Aimee as soon as the procedure was over and then to decide if we wanted to move her to the floor or go to recovery. 

At the end of it all, Aimee did really well. We got good information about her hearing changes. Most importantly, we got to bring her home!