Olivia Updates

This week Olivia had an MRI to check on the glioma in her brain and a follow up visit with Dr. Viskochil. The MRI shows that the gliomas on her optic nerves and in her brain are all stable, and there are no new findings.  HURRAH! It also looks like her MRIs will be every 6 months, instead of every 3 months - a little bit of a graduation.  HURRAH! HURRAH!

The only other concern I've had with Olivia is she seems to get tired quickly or want to be done when we are doing activities (swimming, biking, playing outside, hiking, etc.) and we discussed a couple reasons why - Kids with NF1 tend to have shorter attention spans and grow bored quickly. Kids with NF1 tend to have less coordination and weaker muscle tone, requiring more energy to do activities, so they are tired quicker. But there isn't really an easy, measurable answer so its another thing we get to watch and wonder about. 

Other updates about Olivia -

Over the summer Olivia had her speech assessed and we found she could use some help (those darn L's, R's, and blends), so she's been attending 3 or 4 times a month, and her speech is improving.

The speech therapist was also concerned about Olivia's voice quality - she has a gravelly, monotone voice - and we had to get her throat checked out for anything possibly growing on or hurting the vocal chords.  She saw an ENT through Primary Children's, had a *lovely* exam with a spray anesthetic and an endoscope down her nose while she had to say a variety of sounds and words. Can I tell you how awesome and amazing she was? No tears or crying or howling like some other kids did while we were waiting for her turn. She just did it. There were no findings on her vocal chord, but she does have a weak palate muscle which is common with NF1 kids (weak muscle tone again) and is a contributing cause to her speech problems. Which is good news because we are currently appealing our insurance's denial of coverage for her speech therapy- they are saying it needs to be for an injury or illness, and we are saying Duh! (in a much nicer and medical-letter supported way of course). 

Thank you to everyone who loves and cares for Olivia. We would be lost without the wonderful support of our family and friends, and especially without the love, blessings, and guidance from our Father in Heaven!