We decided to head to the fair yesterday. After meeting with 5 different dr. in 3 days we decided to escape for a bit and forget about life. We didn't tell the kids where we would be going...we pulled up to the fair and Justin was soooo excited. They had such a blast.
Just an update on what's going on around here. We met with a neurologist that specializes in NF2 yesterday, Dr. Narayahan. He is the dr. I found on the NF website. He ordered some genetic testing for Justin via blood samples. Dr. Narayahan said genetic testing only has a 95% or lower accuracy rate. We know Justin has NF2 because of the bilateral vestibular schwannoma's but taking blood from Jason and I wouldn't accurately test us for NF2 so we each have to have an MRI. Good Times!
We met with an ENT Dr. Chiu, who specializes in sinus surgery. We wanted to talk to him because the MRI showed enlarged sinuses which we thought were due to sinusitis but Justin doesn't have sinusitis. We were educated today about the frontal sinus...it usually isn't developed until later in life but Justin has both frontal sinuses and the left sinus is twice the size of the right. It's ballooned up and Dr. Chiu thinks the enlarged sinus is what appears to be causing the proptosis, not the tumor...very interesting. Dr. Chiu wasn't sure what would cause the enlarged sinus and there could be an underlying issue. He recommended seeing us after the tumor is removed and healing has taken place to see if that causes any changes to the enlarged sinus. Dr. Chiu recommended seeing a neuro-opthalmologist who could evaluate the amblyopia and whether he thinks there is something else going on besides amblyopia. Dr. Chiu thought that even if he drained the sinus it wouldn't change the position of the eye?!?!?! Not sure why not if that is what is causing it...perhaps since it's been growing that way it is a permanent thing?!?!?!
While visiting with Dr. Chiu, we were able to meet Dr. Jacobs who specializes in NF2 and who just received a large grant for NF research. Dr. Jacobs will be assisting us with treating the bilateral vestibular schwannomas. Dr. Jacobs said there are some treatments available and he will explain the options and we would need to make a decision on which treatment option we wanted. Geesse...Louise...wishing they would make those choices based on best possible outcome but I that would just be toooo easy.
Yesterday we met with Dr. Lemole to schedule Justin's surgery. It was a very hard visit. Dr. Lemole explained the surgery would be scheduled for 8 hours and Justin would be in ICU for 3-4 days and then in the hospital for another 2-3 days. We love Justin so much...we are so sad that he has to go through this. He is still such a happy little guy. He is enjoying the attention he is receiving from all the doctors...thank goodness. We have a busy week to get him ready for surgery. Surgery will be May 6 or May 13.
Thank you again for all the prayers and concern. We love you all.
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