We had several appointments this week...ugh...
Wednesday we had a couple Occupational Therapy visits. Aside from having to look through several special equipment catalogs (how much space do they think we have?), they went well. New exercises to try. Aimee seems to be getting more comfortable with the therapist that comes to our home and we are getting a lot of great ideas.
We also met with the Neurodevelopmental clinic on Wednesday. We had a few more blood tests done for mitochondrial disorders (mitochondria helps to make the energy that runs organs, fuel growth, ect), as well as, a test for retS (a disorder in girls with small heads that is found in the 7th chromosome and blocks proteins). I got both of these tests results back this morning and they were all normal.
Aimee, Grandma Annette and I went yesterday to have eye exams done at Childrens. The first was a brain wave test to analyze how far the information obtained through her eyes is traveling and if it is being processed when it gets there. Despite Aimee's attempts to sleep through this test, we managed to get solid results. The doctor seemed quite surprised to tell us that they were normal. Slightly delayed responses, but normal. The delay is most likely due to the insufficient myelin.
The rest of the testing that was to be done yesterday was an Eye Movement Study, which Aimee successfully blocked out. We were unable to wake her out of her opposum like sleep in order to complete the exams. (Interesting side note: she was hooked up to the machine when she went into her first deep sleep. The doctor said she went immediately into a dream state.)
Essentially, this is what we know:
-Aimee can see and process what she sees with a slight time delay.
-She has tested normal in all areas, aside from the size of her brain/development of the myelin sheaths. This is a really good thing, because if any of the tests had come back with abnormal results it would have meant her brain would not be able to catch up.
-As it stands, we will be meeting with Genetics to be sure that all the information has been looked through and to determine the likelihood of the same challenge happening with future children.
-The critical point for creating myelin is by 3 years old. By this point, she will be permanently caught up, partially behind or stay where she is at currently. At 3, we will do another brain MRI to determine which of the these has happened and from this we can determine what point she will be able to develop physically and mentally.
-There is nothing special we can do to make the myelin get thicker faster.
-We will continue to meet with therapists to stimulate her development and neurodevelopmental doctors to track her changes in every area.
All that to say...we don't know much.
Aimee could catch up and be normal, simply using her own time clock for development.
or Aimee could be a year behind the average kids.
or Aimee could stay under developed.
No matter which of the above happens, the truth is that Aimee is lovely and a rich blessing to our family. We are having fun playing with her as she is becoming more interactive. Please pray that we would learn to completely enjoy her for who God has made her to be and that His purpose would be made perfect in her life.
