Tuesday, July 16, 2013

A visit to the Neuro Psychologist.....


I think these pictures capture Dylan's personality in a nutshell. He is one of the happiest kids I have ever met. The simplest of things make him laugh and giggle, and that laughter is contagious. He has a almost a magical way of making people fall in love with him. Strangers in the grocery store, at the park, or wherever we go are all drawn to him. He is special. He is our miracle.....

A couple of weeks ago we went to see a Neuro Psychologist. His oncologist believes that some of Dylan's delays are not "normal" reactions to his treatments. Dr. G has dealt with many, many children going through treatments, but nobody has gone through exactly what Dylan did, and especially not at the age he did. Before doing any MRI's or other tests, we were advised to see a psychologist.

I went into the appointment with Dylan knowing what they would probably tell me, but not wanting to hear it. We know Dylan is behind....really, really behind. We can see that he is not like his peers and emulates peers over half his age, including Andrew. We have always been told by therapists that he was just delayed and that he would catch up. This has not been the case.....

The psychologist spent a couple of hours interacting with Dylan and going through a series of tests and games to gage where Dylan was developmentally. If I did not know Dylan was behind before, I definitely knew now. I watched as he showed him pictures and asked him questions and I watched Dylan like I have never watched before. I saw his little mind racing and trying to figure things out, and other times I saw the blank stare on his face as though the Doctor was speaking a foreign language.

After the doctor finished his tests, he concluded that Dylan is functioning at a 2 year old level and below in some areas. He believes that the chemo and radiation had a far greater effect on Dylan's brain than what was expected or "normal". He has officially diagnosed Dylan with a Major Neurocognitive Disorder Due to Another Medical Condition, without behavioral disturbance. The white matter in his brain has been disrupted causing primary deficits in attention, persistence, and short-term memory/memory encoding.

What does this mean to us? This means that nobody can tell us what Dylan will or will not do. Only time will tell. He is currently progressing, but at a very slow rate. But any type of progression is good. This means that Dylan may or may not catch up and be "normal", and more likely that he will always be behind developmentally, and posssibly severely delayed.

Aside from any and all diagnoses....we are thankful that Dylan is here. We have been blessed beyond measure from the joy that this child has brought us. The joy and laughter overshadow any and all of the heartache and pain that we have gone through. He is a blessing. He is perfect in God's eyes, and he is exactly how God wants him.

As parents we always want whats best for our children. We want them to grow up, learn to ride a bike, go to college, get married someday and have our grandchildren. We have to realize that these things may never happen for Dylan and that is very hard, however trivial that may seem. Please pray for us as we embark on our journey with a new perspective. We are learning new ways to parent him and to help him learn. His brain functions a little differently than most. Everything right now is a little overwhelming. We know that we cannot do this alone and that the Lord will be our strength in times of weakness. We know that the Lord has blessed us with amazing friends and family who will not leave our side and will be there to pick us up when we fall. We know that we have thousands of prayer warriors out there praying for our family and our precious Dylan. We know that God is a god of miracles and that He can completely heal Dylan. Whatever the path that God has chosen for us, we will walk boldly and give Him praise. We are thankful that God has chosen us to be Dylan's parents and that we get the privilege to raise this amazing little boy. Thank you for being part of our journey! You are loved and appreciated more than you will ever know!