Olivia Update

For those who are new to Olivia's NF1 journey-
Learn about NF
Facts & Statistics
Diagnosis of NF1
&
Olivia's Story

Recovering after surgery

In the beginning of June, Olivia had a sphincter pharyngoplasty surgery- hopefully to fix her palate which didn't completely close. This was most noticeable when Olivia talked- she lost a lot of air out her nose, sounded very nasally, and was difficult to understand. But it really was a problem when she did anything where she needed to breath- running, playing, eating- so, you know, pretty much everything. She couldn't even build up enough pressure to blow a raspberry! 

The week after the surgery she had a nasty sore throat- not strep, but a red, inflamed, painful throat all the same. And then a week after that is when she broke her teeth dancing in the shower. So not a great month, but she is feeling much better. As for whether or not the surgery is successful, that still remains to be seen. She has a post-op appointment this week, but it's mostly to check on her throat's healing. They won't retest her speaking or scope her throat for another 3 months, so she gets a nice long break from speech appointments & daily practice. 

Other areas of concerns- 

Olivia was horrified to find a fox skin- her favorite animals!

For the last year Olivia has been super sensitive to light. It makes her eyes hurt, and she often wears sunglasses indoors or covers her eyes. Its not just bright light, but everyday, normal light- although bright lights are more painful. It seems worse when she's congested due to allergies or a cold, but it is a constant problem. So far her opthamalogist and other eye specialists don't have specific answers, so we are investigating with her geneticist & possibly a neurologist.

We don't know the status of Olivia's plexiform neurofibroma in her left neck/ear area. It was growing at about a 16% growth rate as of last year. She had an MRI in December 2014, but the woman responsible for forwarding the scans to the National Cancer Institute had moved on to a new job, so it wasn't sent and we didn't realize it wasn't sent until about a month ago. So, hopefully, now its been sent off and we'll hear back on that soonish. Note to self: call this week to find out. Olivia is scheduled for her next MRI this week. In addition to the plexiform in her neck & optic pathway gliomas, they are also checking on her vocal chords. In the pre-surgery exams, the ENT also noticed her vocal chords and throat were more sluggish on the right side, which may mean there is something growing on those nerves as well. 

Hiking near home

Physically, Olivia still gets pretty worn out by daily life. My goal for her this summer was to build her strength so she could have better breath support and not be worn out by basic day-to-day activities. For example, one goal was for her to ride her bike to the top of the hill on our street. It's not a big hill, but she's only able to go about halfway up so we started riding bikes every day. Obviously my goals for the summer were put on hold when we decided to go forward with the surgery, but now that she's mostly recovered we are back to focusing on her physical strength. She needs 2 30-60 minute exercise sessions a day of really focused exercise, not just playing around. We try to do a variety of things so it's fun- physical therapy exercises together, swimming, riding her bike, hiking, exercise classes or swim lessons at the rec center. It takes a lot of time, but it makes such a difference to how she feels and what she's able to do!