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Friday, October 27, 2017

I knew it was a day full of doctor appointments. Literally all day from 9:00am to 4:00pm.   Pyper would see her primary care physician, then audiology, nutrition, endocrinology and neurology. The main one today was her neurology appointment at 3:00. The neurologist would go over the results of Pyper’s MRI in more detail. I was sitting at my desk when the I got a short text from Nicole, then the phone rang. I hear a voice on the other end of the phone trying to talk without crying. My heart immediately sinks. There just can’t be more bad news Lord. Through tears Nicole is saying things like Spina Bifida, seizures, won’t walk until she is 5-7 years old, poor strength in her legs and upper body… (full report is listed below). I am holding in my own tears and questions because Gavin is sitting in a chair just a few feet away from me. He already knows a lot, and for right now it is more than any 9 year old should have to carry. It has been a really hard afternoon. I go to bed tonight knowing God is bigger than all of this.

Today I am THANKFUL that the Audiologist says that Pyper can hear!! 

 

10/27/2017

Doctor notes from Brandon: 

  • Weight 10 pounds 12.4 ounces with clothes on
  • 2nd MRI maybe better imaging like Chapel Hill or Duke and 2nd opinion… would do at Vanderbilt
  • Children’s hospital referral in future… Vanderbilt
  • Dr Vereen is recommending Pyper go to Vanderbilt… they are publishing the most papers on septo optic dysplasia… they also have a team with neurologist endocrinologist etc
  • Off oxygen possibly 4 to 6 weeks (AMEN!!)
  • Use Vanderbilt for 2nd opinion and use Duke for neurology
  • Will have stem test at endocrinologist for cortisol level and pituitary gland
  • Will need vision therapy
  • Says pituitary gland is able to make tsh…. she at least has partial functioning
  • Vasopressin levels may be present but usually you see dehydration she has normal sodium levels and didn’t seem to be dehydrated
  • Cortisol made from adrenal glands
  • Growth hormone comes into play about a year of age
  • Basically Pyper has at least partial functioning of pituitary gland because tsh was elevated at 80… won’t know specifics till tests next week (AMEN!!)
  • She said there is big range with septo optic dysplasia and really won’t know until she gets older and we see how she functions
  • No nystagmus suggesting she sees (AMEN!!)
  • A bit if sluggish pupil reaction
  • Decreased muscle tone midline
  • Simple at sacrum… needs sacrial ultrasound … could be partial spina bifida
  • 90% absence of corpus callosum
  • Small cerebellum (2/3)
  • Microcephalic
  • There will be some degree of low IQ… due to small brain size… IQ guess to be between 60 to 80
  • Has hypotonia… strength
  • Could not walk till 5 to 7 years of age
  • Wants EEG to assess for seizures
  • He knows she sees light… he suspects she sees faces
  • Could have autistic features
  • Showed MRI….pituitary gland possibly 50% … optic nerves are 1/4 of thickness it should be …cerebellum 2/3
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