Everleigh's First Neurologist Appointment

We went to Everleigh's first neurologist appointment yesterday at the Children's Hospital in Aurora. We have been praying nonstop before this appointment for healing and have asked family, friends, and strangers to pray as well. The news we received was better than we had expected. Everleigh's MRI showed that her brain was not injured internally but externally. The part of her brain that has PMG is the parietal lobe. As of now there's really no concerns regarding her development because she is doing exactly what a newborn should be doing. The neurologist said that the human brain is very resilient.  She went on to say that if Everleigh cannot utilize the injured part of her brain in the future then she can learn to use other parts of her brain for whatever development delay she may have. 

At the appointment Everleigh weigh 8 lb 7.5 oz and her head measuring 13.5 cm which is still under 1 percentile but it has grown 2 cm since birth which is a great sign. The doctor is not certain if Everleigh's head will grow where she will no longer have microcephaly, as of now, all we can do is hope for the best. As her mama if Everleigh's head doesn't grow proportionally to her body, but she is healthy then that's all that matters to me. 

Our next steps for Everleigh is to complete these tests and studies: EEG, endocrinology, ophthalmology and genetic counselors. 

Since this was all new to me I came up with some questions with the help of two mamas who have kiddos with the same conditions to ask at our first appointment. I thought I list the questions here incase you are a mama going through the same thing and need some ideas on what to ask.

1. What parts of the brain is affected? How will this affect her development and learning? What can we expect? 

2. What should our protocol be for testing? Annual MRI? Annual EEG? Overnight EEG?

3. Can you please train us to recognize a seizure and talk us through the necessary steps we'd need to take when/if she has one?

4. Can you get us started with the necessary recommendations for OT and PT?

5. How do I get signed up for genetic testing?

6. What resources/therapies would you recommend in my area?

7. Are there any other physicians that you would recommend us seeing?


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