The Peanut Gallery

Wednesday, April 1, 2009

MRI Results

Wednesday, April 1, 2009
So.....I was trying to get this done last night but I just could not bring myself to sit down and face the facts. Kennedy's MRI results came back and they were devastating. We were told that my favorite person in the entire world has a Neurodegenerative Disease. Dr. Michelson showed my mom and I images of Kennedy's MRI so we could have a visual aid. The pictures he revealed left us speechless - Kennedy's brain was not growing and her myelin (white matter) was disappearing. At this point she almost has no more myelin left. The pictures showed a lot of spinal fluid in her brain. Meaning that as her head continues to grow her brain is not and spinal fluid is filling up the empty space. In addition, some other parts of Kennedy's brain (the basil ganglia & thalamus, which are two important structures) were showing signs of atrophy or shrinking. In addition, Dr. Michelson showed us that Kennedy's Cerebellum has not continued to shrink, however, he did show us how significantly small it is. It is about 1/6th the size it should be.

We were told that Kennedy could have one of any 10 very rare genetic diseases. Dr. Michelson said that he thought it was a Luekodystrophy - WHAT, that word again. I thought we already traveled down this road and closed that door - apparently not. I explained to Dr. Michelson that Kennedy was already tested for three different kinds of Luekodystrophies (Metachromatic, Adrenal, & Krabbes) and they all came back negative. Dr. Michelson left us in the room while he went and dug through Kennedy's extensive medical file. After about fifteen minutes Dr. Michelson was back and asked me if we ever were tested for "X" disease (can't remember name) I told him no. He proceeded to tell us that Kennedy was never actually tested for Krabbes Disease. Loma Linda filled out the lab slip wrong and the blood was tested for the wrong disease - not Krabbes.

Dr. Michelson said that it all made sense. He was pretty sure sounding about Kennedy having Krabbes Disease. He said her MRI/MRS images resemble somebody who has a luekodystrophy. In addition, the EMG she had done @ Loma Linda also showed that she had Peripheral Nervemyopathy which also is a syptom/sign of having a Leukodystrophy. We were sent over to the lab to get blood drawn for a test which I already thought was done and produced a negative result.

I wish I could go back and make yesterday disappear! I wish I had a time machine! I knew Kennedy was sick but I guess I just hoped she would live on forever with us and we would adjust our lives to meet her handicap. We would always have a "special" family but I always thought she would be a part of it. I never in my wildest dreams thought I would be sitting in a doctors office being told my child has a terminal illness. I am so sad that Kennedy will be taken from me by a disease - way before her time. It saddens me that I will never get to hear her say my name or watch her take her first steps. I don't know what I am supposed to do with out her. Now we wait and see (three weeks to be exact).....See what God has in store for my darling Kennedy.


Jennifer said...

We love you guys!!!

Sara L said...

I am so sorry to hear about the test results - I will be praying for your family and sweet Kennedy.

(from BBC - bella1334)

Derek said...

Sorry about the test results, hopefully the lab work might suggest something otherwise. Think about all of the precious moments you've had and will the ones you'll still get to cherish with her. Our thoughts and prayers are with you all. Never hesistate, we'll be there for anything you need.

Jenn said...

I've been following your blog since you started it and I've been praying for sweet little Kennedy. My heart aches for you.

Hugs and prayers,


Daxton's Personal Assistant said...

We're praying for you all...

Jennifer said...

Isn't she too early for the onset of Krabbes??? A little boy I baby sat developed perfectly normally and at 18 mo or so he started to digress quickly and without warning. He passed away within 4 mo due to Krabbes. I am so very sorry to hear that there is more wrong that what you were hoping to hear. It's so hard to live in a world where the most innocent suffer and parents have to bury their children. Our prayers are with you guys.

leighalisen said...

Hi Stephanie ~ You and I don't know each other, but my name is Leigh. I heard about your story with your precious Kennedy from a mutual acquaintance, Shannon Cecil. I just read your most recent blog and I just have to say that my heart truly aches for your entire family and especially that wonderful baby girl.

But I just felt the need to mention to you that it was such a breath of fresh air (if there can be one in a situation like this) to see by some of your comments that you have not for one second lost your faith. I think that is truly one of the most valuable and amazing things about having a relationship with God. He is helping you to be the best Mom to Kennedy and obviously his love and grace is getting you guys through this unimaginably hard time, and I am so happy to see that your trust and your faith is still with him.

Gosh, I cannot even comprehend how you feel. And I do truly hope that you will have a pleasant surprise and find out that Kennedy does not have a terminal illness. She is absolutely beautiful and a true slice of heaven. I will pray for her, and you and your family.

I wish you all well.

In His name,


Cindy's Garden Thoughts said...


You are an incredible woman. God did pick a special family for Kennedy. Your family and especially Kennedy will be in our hearts and minds.
I have put in several requests to our circle of friends prayer groups, which will make all the difference for you as you are going through this.
Remember,you are surrounded by those who care deeply about all of you even though you have never met most of us who read your blog and follow your story. Thank you so much for allowing us a window to your world and to be brave enough to talk about it.

Love and Prayers for you all.

Cindy Poore, Kennedy Clayton's Grandma

ThatsMe!! said...

I am so so very sorry....I will be keeping your family in my thoughts and prayers ..I just can't believe how many screw ups have been made with you guys, it really makes me mad..My heart truly breaks for you all..{{{Hugs}}}

Sarah Bug said...

Brian and Steph.... I can't even imagine what you have gone through, and what you are going through now, as no parent should ever have to... but your love and strength for your little angel have proven every prognosis wrong. I truly believe that you and Kennedy are fighters and you will continue to fight against any outcome. Our prayers are with you everyday and we love you!