Olivia's NF1 Update

What is going on with Olivia these days? 

For the most part, Olivia continues to be her fabulous, amazing, wonderful 7-almost-8 year old self. She spends her days playing with her sisters, coloring and drawing, snuggling George, and always looking for ways to help out. 

Unfortunately, there are a number of physical health concerns going on right now. She is getting headaches quite a bit more frequently (3-4 times a week), she is more severely worn out by activities that were once normal like taking walks or riding her bike, her speech continues to be difficult to understand, and there is some weakness in her left arm/hand the doctor is concerned about.

Her MRI in July showed stable optic gliomas and tectal glioma. The plexiform in her left ear/jaw area continues to grow, although not yet at a rate where we feel treatment is necessary. She is getting another MRI this month to continue to check the growth of her left ear/jaw plexiform, but it has also been extended to include her brachial plexus. When we saw her genetics doctor in October and he felt she had some weakness in her left hand, but was not able to feel anything abnormal in her arm, so the MRI will check the nerves to see if there is anything to be concerned about.

We were also concerned by what appeared to be an unevenness in her legs, so Olivia had some x-rays. She has a slight 1 cm pelvic tilt and an 11 degree curvature between T7 and L3 vertebrae (scoliosis). There is no degeneration of the vertebrae and the doctor doesn't usually become concerned about the curvature until is is 20 degrees or more.

In an effort to figure out why Olivia is worn out by activities that were once normal, she did a sleep study and had some blood drawn for testing. The sleep study showed normal sleep patterns and there was nothing amiss with her labs. Her exhaustion is mostly likely general NF1 related, but what does that mean we do? About 4 years ago when Olivia had a similar problem (too inactive due to the winter weather and was worn out by daily activities), we stepped up her level of physical activity and this strengthened her body to the point she was able to resume a normal activity level. So, we're making daily physical activity a higher priority to see if that will help - this means daily visits to our local rec center for swimming and alternating with a kids' fitness class, but fortunately, this is something all of us will benefit from doing!

Olivia will also be getting a physical therapy assessment to see if focusing on her core strength and breathing will improve her speech. In the past, the ENT has not found any physical defects to be responsible for her speech struggles, and we'll be doing another visit with him this month, but don't expect to find anything has changed. Speech therapy continues to help with her articulation problems, but is not helping her overall intelligibility. This month Olivia will also be getting a physical therapy assessment to see if she could use some help there by focusing on her core strength and breathing to improve her speech. 

So lots of concerns right now, lots of things we're watching, and not really much within our radius of control. Please keep Olivia in your prayers this month- lots of appointments & her MRI.