Keeping up with Tyler

I had the honor of meeting this beautiful woman today. Her name is Carmen, and she has NF1 just like Tyler. She and I talked about some of her experiences with NF — the surgeries, the pain, and the hurtful comments from other people who don’t understand. Yet through it all, she has never let NF define her or allowed herself to fall into a victim mentality. Carmen went to college, built a career with the U.S. Postal Service, and proudly stands on her own two feet. Listening to her speak about her life and all she’s overcome left me in awe. Meeting her filled me with hope that Tyler, too, will grow into an adult who carries that same resilience, independence, and grace — living life fully and on his own terms. ❤️

It’s been a bit since I updated everyone on Tyler’s progress. He had a check-up last week and is thrilled he has finally passed me in height, lol! His pediatrician actually thinks he will be around 6 ft in height!! Then today, he had an appointment with Dr. Wolf today and overall, he looks great!!

He has recovered from his surgery and can finally get water in his ears, yay! Fixing the ear drum was successful but raising the ear to be symmetrical with the other was not. The tissue behind his ear is paper thin and wouldn’t hold. We are exploring what our options are as it makes wearing glasses very uncomfortable and can be painful for him.

Next, we are STILL fighting with insurance to get approval for Tyler to restart the Koselugo (selumetinib). They just keep requiring more things, like another echocardiogram or more labs. It’s never ending. 🤦‍♀️

Tyler is out of surgery and back in the room with us. He should be able to go home soon. It’s been a long day and we are looking forward to getting home.

We are here! It is an outpatient surgery but will take 4-5 hours. The teenager didn’t want a picture taken 😂