The issues that Kiahna lives with put us all over the map. We have good days & horrific days. We have okay days & days that make you think we will never live this way for the long haul.
Recently, things have improved drastically.
We began seeing a new neurologist.
We began Occupational Therapy.
We began services with an agency that is new to our area Meridian.
We stopped some medications & began some others.
Today we are in a place where we are living semi-normal lives. She is stable enough to go places without melt downs. As long as I stay aware of her sensory needs & don’t let her become over stimulated or worn out.
She has been able to handle the Christmas season with ease. The transition to home from school for break. She was invited to play at a friend’s house & dealt with that with ease.
Praise the Lord!
The new neurologist ordered some testing that we had never had done before.
The first was a sleep deprived EEG
Thankful for the help that my parent’s gave me preparing for this test. We were to keep her awake most of the night & then drive her to FW for the testing at 8 am. They kept her awake so I could sleep & then drive her in to the tests.
After this test we attempted an MRI. She didn’t cooperate with that. It’s a scary test! We had to reschedule that one with sedation, we had to wait for that to be approved by insurance & that is coming up next week.
We just received the results of the sleep deprived EEG & they were abnormal enough that the doctor has ordered more testing. This testing will require 24 hour admission to the hospital & the EEG will be recorded all during that time.
The tests will confirm if she has Epilepsy. She has not had any obvious seizures. But, the testing was still abnormal enough it can’t be ruled out. If she has the same issues while she is awake that she has when she is asleep, they will diagnose her Epileptic.
Add it to the list of labels.
When we began the latest medication round we had a great 2 weeks & then the behaviors began again, we increased them & have been on the level for a few weeks again… it’s a day by day thing. Waiting for the medication to stop working.
Continued prayer is vital.
Pam
