January 28, 2012

MRI Report

Hello All,

As many of you know, Charlie had an appointment with his neurologist on Thursday to check in about results of his recent MRI.  This was Charlie's first appointment with Dr. Dowling at Children's Hospital in Dallas.  I have quite a bit of information to share with you, some good and some difficult.  I will try my best to explain things clearly and to give you an accurate picture of Charlie's brain scan.

First the good news.  Dr. Dowling was enthused by Charlie's ability to connect with him, smile, laugh and interact socially.  Dowling explained to me (Sarah) that most of the patients he sees have neurological disorders and brain damage that prevent them from socially interacting with their family and others.  Once again, I realized how lucky we are in Charlie's gregarious social nature, his desire to connect and his healthy smile.

This was Charlie's third MRI.  His first was in the NICU - a haunting picture of his brain hemorrhage when it was new.  It was like looking at a lake, below the surface of which there hid an underwater city.  The second MRI was taken when Charlie was three months old.  The images showed the bleed in the process of being absorbed by the body, very little scar tissue and a foggy field of brain matter surrounded by healthy brain.  To continue with my metaphor, it was as if the flood waters had receded to reveal a water-logged city.  At the time, Charlie's neurologist, Dr. Majeed, explained that we would have to wait and see which parts of the city survived the flood.  On Thursday, the wait was over and I was able to take a peek inside Charlie's precious head.

I saw a beautifully clear photo of Charlie's brain.  I could see that the previously foggy field of affected brain was no longer present.  The affected area did not survive the bleed, but died away leaving a dark hole in the center of his brain's right hemisphere.  Looking into the black space of Charlie's brain was very difficult and I'm still not sure how I feel about seeing this photo.  I have created a little sketch to show you what I saw.  (Hopefully I'll be able to replace these drawings in the near future with the actual MRI images.  But until then, my silly cartoons will suffice.)





The next image I was shown, highlighted the extensive scar tissue that surrounds Charlie's black space.  As with any wound, the body creates scar tissue to secure and protect the body from further damage.  Unfortunately, scar tissue in the brain creates impenetrable walls, which stop or stall messages from being sent and received in the brain and body.  If the brain creates a descending message to the body and that message is stopped or stalled by scar tissue, then the brain will fire off another message.  And another.  And another.  This creates shaking and twitching and palsy in the body.  We have seen some of these signs in Charlie.  The thick black lines in my sketch below represent the scar tissue on the right side of Charlie's brain.




As you can see, the scar tissue extends backwards and forwards into the frontal lobe.  Dr. Dowling explained that this front portion of the brain doesn't develop until puberty and that we need to prepare ourselves for lots of neurological change when Charlie reaches Jr. High age.  Most kids go a little nutty around that time, but Charlie may also have to contend with (if he hasn't already) late-onset epilepsy, depression, learning disorders, personality disorders, Autism and more.  Again, these are not diagnoses, Charlie is simply at a much higher risk for these disorders.


One of the first things that Charlie's NICU doctors explained to me, was that his brain bleed had reached the Thalamus.  This is still the case.  Charlie's Thalamus, which is like the mother-board of the brain, is damaged.  Most of the sensory signals, like auditory (sound), Visual, Somatosensory (from your skin and internal organs), go through this organ on their way to other parts of the brain for processing.   It also plays a function in motor control.  The other part of the brain that controls motor function is the Medulla Oblongata, a funny Mickey Mouse shaped thing at the base of the brain.  Charlie's Medulla was also damaged by the bleed.  It looked like the Medulla was a sweater that had been moth-eaten, left thread-bare and misshapen.  Again, here is a cartoonish sketch of Charlie's Medulla.




The final photo that Dr. Dowling shared with me was of Charlie's Corpus Callosum.  The Corpus Collosum is usually a thick bundle of connective tissue (like wires) that create a bridge of communication between the left and right hemispheres of the brain.  It usually resembles bundled cables.   Instead of being thick and full, Charlie's bridge started thick at the base and quickly thinned into a spindly string.  As you can imagine, this presents huge obstacles for Charlie when trying to coordinate impulses, movement and thought.  Here is my last drawing.





We did receive some good news.  Charlie's Cerebellum (also known as the reptilian brain) is perfect and totally untouched by the bleed.  The Cerebellum is the little fern-like mini-brain at the back of the head that hangs out near the brain stem.  It is associated with the regulation and coordination of breathing, digestion, circulation, elimination, temperature, the fight or flight response, movement, posture and balance.

Dr. Dowling was very pleased to see that Charlie has free and easy movement of his left leg.  It is not rigid or taught in the way that Charlie's left arm and hand tend to be.  This freedom of movement in his "affected" leg and the in-tact Cerebellum are encouraging signs in Charlie's battle to crawl and walk.  At this moment in Charlie's development, he is unable to sit up unassisted, crawl or walk.  He is, however, and expert roller!  And we are constantly pulling him out from under furniture.  As you can imagine, Charlie is VERY determined.

I know that most of the information we shared here is difficult to read, much less comprehend.  What does it all mean for our Wonder Boy?  It means that he can look forward to a childhood filled with therapy and medical tests.  It means that every physical, mental, emotional and educational stride he makes will be hard fought and hard won.  It means that every impulse he ever has in his life will be translated and re-routed.  It means that he will be delayed.  It means he will be frustrated.  It means that he may not do all the things we hope for him.  And it means we have no idea what Charlie's future holds.  To say that Jack and I are not completely terrified would be untrue.  But in these moments when we're forced to face the realities of Charlie's extensive brain damage, we comfort ourselves by being present with Charlie. One look at our son soothes our fear of the unknown and reminds us how lucky we are to be here with him. 

Speaking of the future, Dr. Dowling has ordered an EEG and lots of other tests for Charlie.  He also encouraged us to stick with the therapies.  The brain grows and changes through outside stimuli and therapy is all about stimulating Charlie in a variety of ways.  We will continue seeing our wonderful physical therapist (Lori) and speech therapist (Michelle).  We are also, with the amazing help of Kenna's Kids, beginning occupational therapy at Baylor's Our Children's House.

Congratulations!  You've made it to the end of this immense post. Thank you for all your support and love.  Charlie is thriving because of the incredible support of his community.  Gratitude, gratitude - nothing but gratitude.  We would like to leave you with this wonderful video we took of Charlie tonight.  My hope is that it will soothe your fears and remind you that all we have is THIS moment.  Sometimes, the only thing you can do is laugh...



Yours,
Sarah Greenman


19 comments:

  1. He is beautiful and I continue to be in AWE of you and Jack's strength and faith. Mind is unlimited, Charlie's brain power will continue to grow as it figures out new ways to communicate and surprise us again and again with each new desire he has to reach out to those he loves and who love him.
    ALL OUR LOVE,
    Jim and Lee Marx

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  2. I couldn't have stated my feelings any better than what Jim and Lee did. I believe in miracles and I believe in Charlie, and you and Jack. He will prove those pictures to be a jumping off point into healing, growth, and the unknown power of the body to mend and make itself stronger and thrive. This was one of the hardest things I have ever read in my life. I hurt for all of you and yet, I do have deep faith that Charlie will show us all how to live, love, and laugh and to be always in the "present." He is a gift to us all and I am sending so much love to you all there. OXOX Deanna Constable- former brained-damaged patient of encephalitis, who had to learn how to talk again and who went on to win national public speaking awards and to earn a master's degree.

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  3. What an infectious laugh that little munchkin has! The brain is capable of amazing things and with the clear strength and determination of that little boy, we bet he will continue to astonish and surprise us all! The heart is also an amazingly powerful thing. It is so deeply moving to see the love and happiness in Charlie's eyes. You, your family, the community that you have made.... it is all more beautiful than words. We love you.
    Chris, Anne, Amaya & Ishai

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  4. I look back on my life thus far and remember so many times when I felt determined. Frustrated. When I had impulses and did not or could not put them into action. These feelings are universal. And because you write this blog, Sarah, we are more educated, we understand so much more about Charlie's development, and we are going to grow and change WITH your wonderful boy. THANK YOU for keeping us so close!

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  5. All of my love and support goes to you and Jack and Charlie and your whole family. Tough to read this stuff, but how incredible is he, huh!? And with two incredible people as parents we all know that he will have no choice but to overcome and "show them"!
    There is nothing neither good nor bad, but thinking makes it so.

    Or something like that. Love and laugh on.

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  6. That baby boy giggle is so infectious!
    Thank you for putting into words everything you've learned at the neurologist appointment.
    One thing I know, Charlie chose the exact right family to be born into. Way to go, Charlie!

    You are good to remember to stay in the now; it really is all we have.

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  7. No matter what happens to Charlie, he knows love and laughter. In the end, there isn't much more important in life than that.

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  8. “Smiling is very important. If we are not able to smile, then the world will not have peace. It is not by going out for a demonstration against nuclear missiles that we can bring about peace. It is with our capacity of smiling, breathing, and being peace that we can make peace.” -Thich Nhat Hanh

    Charlie embodies this and blesses his community because of it. Hugs to you all.

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  9. Thayer (theartsyone)January 29, 2012 at 11:26 AM

    Sweet Sarah- Just remember Dr.s dont know it all.Charlie is going to have an amazing life! Hugs!!!

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    1. Reading all of these beautiful notes reminds me that all things are possible. Instead of slipping into the reality of what we see on the films, I choose to remember what a powerful thing prayer/energy/hope/miracle....whatever we want to call it, is. I intend to believe in my "Little Charlie Fighting Bear". And so it is!

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  10. I continue with prayer for Charlie but also for you and your husband to have strength and peace throughout Charlies life. All things are possible through Jesus ! Lots of love Corrina.

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  11. Charlie is so very lucky to have you as parents. I believe in miracles. I have seen them happen. Peace to you.

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  12. "My hope is that it will soothe your fears and remind you that all we have is THIS moment. Sometimes, the only thing you can do is laugh..."

    Isn't that the truth. Thank you for sharing! Now, I'm going to finish my little cry and get back to work.

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  13. I don't know much to say except that I already love you, my newest dear friend, and I will do anything I can for you.

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    1. You amaze me. I'm so lucky to have met you.

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  14. Thanks for sharing this information Sarah and the adorable video. I will be praying for you and your family regularly.
    Tiff. Wilkins

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  15. What a delightful giggle he has. He is a trooper as are you and Jack. You probably don't remember me Sarah, but I know your mom and dad and saw you as a high schooler at PRHS. My best wishes to all of you. Thank you for sharing such a difficult yet inspiring story.

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  16. Meera @ firstsenseFebruary 8, 2012 at 5:08 AM

    Charlie is such a wonderful little boy. I wish you and your family all the strength, love, luck and miracles that can come your way, you are all so amazing and deserve all the happiness in the world. xx

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  17. Hi Sarah. I've been a lurker, following your other blog for awhile. I'm a foster/adoptive parent, and my son was born exposed and addicted to cocaine and other hard drugs. As a toddler, he was abused and sustained a serious head injury. These things damaged his brain, and we were warned to expect various neurological and behavioral crisis during his adolescence. But what his brain scans couldn't capture is a spiritual depth and capacity for love and understanding that is so different and so special. Some of the predictions came true, but many did not, and throughout, his resilience and emotional sensitivity have taught me so much and opened my eyes to so many things in the world I am grateful to know and would not have otherwise. Good luck to you, and Charlie, and Jack.

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