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Peter's Journey

This site is where we will post updates for Peter as he fights a neurological autoimmunity syndrome. Peter is 9 years old, he was a very delightful and inquisitive child.[...] read more

Latest journal entry

Update on our Peter

 

Peter saw his doctor is New York in May. The doctor was extremely happy with Peter's progress, since seeing him last August. He feels very confident we will continue to see healing and brain development. We definitely continue to see new development mentally... But with that comes more frustrations for him as he understands and had more awareness of life and the real world. Emotionally, he has little control over himself. We have learned that slower to develop are the parts of the brain that regulate and process the emotions. 

 


Peter does not have a fully functioning immune system, so that affects every aspect of life for him, including the food he eats. The diet protocol he has been on since January has been very helpful for his overall health. 

He has been commenting recently on hearing the birds sing, which is a remarkable improvement. This morning he asked me, " mommy, do you hear the birds sing? They are so pretty!" for him to notice and comment on it, is an exciting sign of healing. 

Continued IVIG's are definitely the best path forward for healing for him. At this point we don't have the next one schedule, as we have other testing the doctor would like. This month he will be getting a 48 hour VEEG at the children's hospital in Cleveland, followed by an MRI. These tests should be very helpful in going forward, giving the doctor much needed information.

 


"Jesus my Savior, He is my Lord. 

My precious Redeemer, the Light of the world.

My hope for tomorrow, my strength for today.

With grace all sufficient what'ere comes my way.

He is my Shepherd and I shall not want.

My Rock and my Refuge in the midst of the storm

My Shield and my fortress, so precious is He.

A friend like none other, is Jesus to me."

-Frye

 

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