Monday, May 19, 2014

Nesiah IEP meeting

When Nesiah came to us a month before her 4th birday, she had already been in foster care for over a year. She was a sweet girl, but had very little interaction with anyone or anything around her. She refused to hold anything in her hands. She hated crowds and loud noises. She could barely sit on her own. She was not able to bear weight on her legs. They said she was blind. She did not acknowledge her new siblings. She cried only when she got mad at therapy. She constantly whacked her throat with her fist.

When Nesiah was born, she was a happy, easy going child. She was above average when she turned two. But less then 4 months later, she was injured. She has a NONE ACCIDENTAL BRAIN INJURY.  The PC term for attempted drowning..
Her brain was severely damaged. She was hospitalized for 3 months. When she was finally released she needed a g tube and total assistance with every moment of her daily care. She was in an excellent foster family from that time until she came to live with us.


My first visit to all her specialists, I asked lots of questions. I wanted to know what to expect, what to work for etc.. I was told, we are 2 years post injury at this point we do not expect any further progress. She will never walk, eat by mouth or even really acknowledge and show you love. She will be in a vegetative state for life. Her brain wiring was all killed off by lack of oxygen. Picture a computer and all the devices it is connected to, now imagine if all those wires were cut. Yup that is her brain.

Her dx: Traumatic Brain Injury, Tonic Clonic seizures, Cortical Vision Impairment, Gtube...


6 months after being with us, I took her to get an evaluation so we could get services and assistance for things like wheelchair lifts and adaptive toys... the lady came out and was shocked to see how happy and attentive she was. She informed me that very few people with brain injuries to this extend are able to enjoy life. Most become trapped in themselves and do not respond to their environment. Already we were seeing the hand of God in her life!


Once I got an education on sensory issues, she was able to calm down and interact with her environment much more.

Nesiah has grown so much. Despite the Dr's advice I went ahead and started feeding therapy. It has a been a long road, but she is now eating 78 % of her meals as pureed food eating by mouth!

We had  her IEP meeting last week. These are her current goals! GOD IS GOOD!

Goals currently include, identifying familiar objects, choosing and eating a large variety of pureed foods, walking enough to make her life easier, learning to use the toilet, identifying herself in a photo, intentional play with a toy instead of just shaking or tapping it.

We are excited because she has both at school and home  been seeking out and intentionally "asking" for attention from a busy adult. She occasionally copies phrases or songs... She has cortical vision impairment but, she has an amazing vision therapist who helps her learn to work with what she CAN see and adapt.


Nesiah knows her sisters and brothers, she is jealous when I sit down to rock. She love Miss L her friend at church. She loves to sing and can actually carry a tune, but we can never get her to work with us. It is always her own little song. :)

Nesiah got to be an angel at our Christmas program!


We are seeing God heal Nesiah. One step at a time. It's a long slow journey. But the progress is evident. Nesiah spend the weekend at a friend's house while we traveled. This friend was amazed at the progress we have made just in the last month. She was happy and calm, relaxed and interacting better then ever! 




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