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Wednesday, February 15, 2012

The Latest on Makayla

SILLY little stinker!

Since I spent a good portion of time on the phone today with Lucile Packard Children's Hospital, where Makayla sees all her doctors for her Nystagmus, I thought this would be a good time to share everything we've learned in the months since my last post.

After Makayla's MRI, while we were still waiting for the results, we had a follow up appointment with her Pediatric Ophthalmologist.   We were in and out of that appointment in less than five minutes and the doctor said no more than, "looks no worse and no better, see you in six months!"  Before we even made it out of the parking lot, my husband and I decided Makayla needed a better doctor.  Since then, she's been seeing a PO at the same Lucile Packard, Stanford's Children's Hospital, the same place where she sees her Neurologist.  But, let me get back to the MRI for a minute...

The neurologist informed us that Makayla's MRI showed no signs of anything that would cause her Nystagmus, and said that her Nystagmus is most likely congenital.  They did tell us that there was some space that indicated possible delays, but it may just be due to her prematurity, it's something we'll just have to wait and see as she develops.  The good news is, that Makayla's Physical and Vision Therapists think she's doing great.  She has caught up with her peers now, and may even be exceeding if you adjust her age due to her prematurity!

Makayla's new PO has been wonderful, we've seen her twice now, and have another appointment coming up.  She feels strongly that there is no such thing as "Congenital Nystagmus," and is determined to find a cause.  I really appreciate that about her.  I'm so grateful to have a doctor that wants as much information as possible and won't just settle for, "I donno."  Since Makayla is so fair, she offered to refer us for genetic testing to see if there is albanisim, which commonly comes with Nystagmus, but said that the testing is often unreliable, plus, I'm quite fair myself, so it's likely she's just a mini me.  At our last appointment with her she asked that we have a Electroretinogram (ERG) done on Makayla to see if we can get anymore information about the way she sees.  We are currently waiting for that appointment to be scheduled, and unfortunately, Makayla will have to be sedated again...

That's the short of it, but I will share more as we continue to see doctors and have testing done!


  1. I am SO happy that you have a new doctor who wants to do more! Makayla is a shining star who lights up a room & I love her so much xoxo

  2. that is great news for everyone!!