MRI Results

So if you haven’t read (in previous posts) already, our oldest son MJ (5 y.o.) was diagnosed with Autism in September (2012). Since his diagnosis there have been several different evaluations to further pinpoint his individual issues and needs. 

His Autism Dr. at Phoenix Children’s Hospital sent us for an MRI due to some of his unusual movements that we have been concerned about- mostly she wanted to check for possible silent seizures. When I found out they were doing MJ’s MRI, boy was I nervous for him. They (of course) needed to put him under anesthesia so he wouldn’t move – and that had me worried. What mother wants their child to have to be under anesthesia for any reason, right? MJ had his MRI under anesthesia on Friday 1/11/13 and I have to tell you Phoenix Children’s Hospital is nothing short of amazing. He went through it like a champ.

But…….the MRI Results - Not what we expected

Children with Autism often have issues with the frontal lobes of the brain so this is where they were looking. We had the MRI on a Friday. We received a call directly from MJ's Dr. on Monday morning. Yes I said directly from the doctor herself – the first office day after the test….this can’t be good. She was calling to tell us that they found something on the MRI but not what anyone expected. While looking over the total brain - they found his brain/skull did not properly/fully develop in utero and he is being diagnosed with what is called Chiari Malformation. Chi – what? Brain birth defect? Oh Lord help me.

He has structural defect in his cerebellum and brain stem. We don't know much else right now except that it causes balance issues, breathing problems, swallowing problems, sleep apnea, muscle weakness and pain. We have been referred to a neurosurgeon at Barrow's Institute at Phoenix Children's Hospital and we will see him on Thursday morning (1/17/13). Most likely this will result in MJ having some type of brain surgery.

When Dan called me at work after he got the doctor call I went numb. I was gasping for air, my world went spinning, and I was literally shaking like a leaf. It had to be one of the most terrifying phone calls of my life. My baby was going to need brain surgery? Oh dear God please help us!

Scared and sad doesn’t even begin to describe the feelings we are having right now for our little boy. You know in times past we haven’t wanted to “bother” people with things, we have wanted to “handle things privately on our own”. Seems ironic considering our hearts are so heavy to help others, but in times past we didn’t want others to help us. We are rallying the troops on this one. Now more than ever we covet your prayers. Each and every one of you, whether you know him personally or not – the Lord hears it all. Thank you.

Matthew 18:19-20 (NIV)

19 “Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. 20 For where two or three come together in my name, there am I with them.”