The Peanut Gallery

Thursday, September 11, 2008

Kennedy's EMG

Thursday, September 11, 2008

Kennedy had her EMG (Electromyography) today which is a test to monitor the function of her nerves and/or muscles. The test is pretty brutal, however, Kennedy handled it like a trooper. She was unable to be sedated for the test, in efforts to obtain the most accurate test results as possible. Her blood pressure was pretty elevated most of the day, but other then that she hung in there. Brian and I were at her room to hang out with her once she was done.

Brian and I both had our minds set on talking to the doctors today. We wanted to get some sort of update - we had not received any new news in about three days. Our nurse paged Dr. Abriham when we arrived. Kennedy had her eyes wide open, even after the rough morning she had.


Dr. Abriham came in and let us know that she had the test results from the EMG - WHAT TEST RESULTS ALREADY!! That already signaled bad news. They never have the final report of any test within a couple of hours unless they say an abnormality and investigated further. The Dr. explained that Kennedy's muscles were normal, however, her peripheral nervous system was abnormal. She told us that everyone thought (herself and the neurology team) Kennedy had Leukodystrophy Disorder. This is a rare group of genetic disorder that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates the nerve. These disorders are progressive, meaning they get worse with time. This disorder encompasses 50 + diseases. The doctors ordered two more labs to be drown and sent out today. The nurse told the doctor that she was not comfortable pulling both labs at once, since they required 5 cc's each. Kennedy is so small and pulling so much blood at once can cause her body to crash (thank god for my primary nurses).


The doctor told us that they were focusing on three disease (in order of likelihood);

Metachromatic Leukodystrophy (MLD)
Globoid Cell Leukodystrophy (Krabbe Disease)
Adrenoleukodystrophy (ALD)

I asked how likely it was that she had one of these - and I quote "if one of these diseases are a match the Head Neurologist has no idea where else to look". Those are always very comforting words. Brian and I left early tonight (10:00) we just couldn't stand by and stare. We were both just to sad and depressed. It was alot of news to take in.

I just hope Kennedy can pull through and prove all these over-accredited doctors wrong. I don't want to accept the fact that we might never get to take her home and show her room that her dad and grandparents spent so much time in making it just perfect, the three of us might never get to have a sleep over in our bed, we might not ever get to just sit and hold her all night long.

Thank you everyone for all your love and support. You guys are our rock. I especially want to thank my husband (I don't know if he will ever read this) but without him I by myside I don't know how I could go on.


(Above: Daddy laying a big smooch on Kennedy's forehead. He was kissing her ouchie)

(Above: "Daddy come back and give me another kiss)

(Above: The first "real" shirt Kennedy ever wore. The nurses had to keep her warm for her EMG)

5 comments:

mandy said...

Hi Stephanie,

You won't remember me, but I am your Aunt Cathy in UT daughter-in-law. Married to Michael. Cathy gave me your blog address.

Kennedy is absolutley gorgeous!!! Just wanted you to know you and your beautiful family are in our thoughts and prayers.

Lots of love,

Michael, Mandy, Trace and Cabria

MOPS at Granite Creek said...

...no words. I just want to scoop her up and run out of there with her! As i'm sure you must feel every time you see her.
All our love,
Brandon, Shannon, Shane and Braiden

erskie56 said...

Stephanie & Brian -

Thank you so much for sharing Kennedy with us! She is so beautiful (just like her Mom). Can't imagine anyone being a better Mommy & Daddy than you guys!

You are all in our prayers and we're sending big hugs your way. Stay strong and don't forget that like Kennedy, you are sooooo loved!!

Love you -

Lynette

traci said...

Stephanie,

I wanted to tell you how adorable your little princess is. Your a wonderful mommy. Stay strong! My thoughts and prayers are with you all. Give her all the loving you can give.

Your aunt Linda gave me your blog address.

Traci
kathy's daughter

Randy said...

Stephanie & Brian (BEEF),
Kennedy is so blessed to have you two for her parents. I know that all she needs right now is you to be next to her and she will find comfort in whatever happens. It is so very hard to focus on Derek and Jen's wedding when I know that the two of you are going through this. Brian has been like a son to Randy and I, we feel like he is part of our family. Derek and Brian have had many times good and bad together but this is the toughest time yet. Please know that the SMITH FAMILY is praying everyday for Kennedy and that we love you both so much!
We are only an hour away if you ever need anything please call 760-408-8378 and we will be there in a heartbeat. I have so much faith in Loma Linda if anyone can make it happen it is them. Please thank your nurses from all of us they are very special people.
We wish you love for your family and prayers that will help to get you through.
Love,
DEE