Friday, March 20, 2020

Where have I been?

We're all social distancing now, but I've slowly been noticing that I've been distancing myself from the world since last July. It's no big secret that life has been challenging at times for our little sweet man. But let me go back to the beginning of last year, and we got notice at our neurologist appointment that her practice was changing over to a membership-based practice. The fee for staying there wasn't extremely high, but when I learned that they were still billing insurance and charging copays... it just seemed like I was being punished for an issue with the insurance side of the coin.

So we went back and forth a bit, and I started making calls to a few other clinics to see where we would land. Most of those clinics couldn't see him until October of 2019, but I finally found a great spot with the T.H.I.N.K. Clinic in Houston -- they have several locations, and we see the one in our area. Anyway, they were able to get us in around the end of July for our initial visit.

To say that it was an eye-opening experience would be an understatement. I guess I just had completely miss judged what our previous neurologist had been doing for the 5 years we were her patient. We went every 6 months, and even though she had asked me a billion questions about how school was going -- nothing ever came from that part of the discussion. Honestly, I thought it was weird that I was telling her all that information, and she took notes on it... but that was the end of it.

I'd been having concerns that there was more to the picture than I was being told, so I mentioned that when making the appointment with the new clinic. They ran with it and did an autism screening. It came back that my precious boy has autism, but that's just the tip of the iceberg of things that I learned that day. This new doctor spent an hour with us, and I walked away with referrals for 8 other specialists and therapists that they wanted us to see. Y'all, I was completely blown away.

You see, we've known that James has Neurofibromatosis since fairly early on - when we were living in Memphis it was confirmed and they did his first MRI... but really since then other than some testing when he was around 4, no one has really tried to get in there and help us get any sort of REAL help for us.

We left that appointment and a few weeks later had a 72 hour EEG to test him for any seizures, that came out completely clear -- but man, this kid did NOT enjoy that testing. We were able to get into the Neurofibromatosis Clinic at Texas Children's Hospital, which was another very educational visit. I've got some follow up to do with them, but they want to do some genetic testing on him that they say can help predict what problems he might have going forward, and help us know what to expect. They also said that he doesn't have any issues on his optic nerves and by his age, it's unlikely that they would develop. We've got an appointment in mid-April for a neuro-eye exam, but I'm not sure if we will be rescheduled at this point. We've also got an endocrinology appointment in May... again if we can get to them.

We waited and fought a hundred rounds trying to get him into a clinic for a neuro-psych test which we just got completed at the end of February... y'all, there is so much to process from that visit. I'll have to dive into it in another post, but while it wasn't completely unexpected... there were tears from this pile of emotions over here.

This is a long post already though, and there is just SO much more to say... and that I've learned. Not to mention since there isn't much else to do these days... I'll be back very soon with more.

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