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Tuesday, June 9, 2009

Tag! You're it! Tag of Six

I've been tagged by Debbie of Blueberry Plains. Debbie is a wonderful New England blogger, living in Southern Maine. She and I connected a while back, and I've thoroughly enjoyed her friendship! We were stationed in Brunswick, Maine, just before relocating to Chicago. We absolutely LOVED it there, and cannot wait to retire so we can go back to the Vacation State and home to Blueberry Plains. :o) Now, on with the show . . .



Your Mission, should you choose to accept it:

1) Go to your photo files...Select the 6th photo folder


2)Select the 6th photo in that folder


3)Post that photo along with the story behind it.


4) Then challenge 6 blog friends to do the same!



Let me start this post by saying that I'm still working from the kids' computer, as my laptop is still . . . well, uh . . . 'resting.' The battery gave out after five years of faithful service. It will cost $140 to replace! Wow! Fat chance getting my laptop back any time soon! So, until, then I'm fighting four boys for computer time. My Fortress is not quite so serene these days. So, of the images stored on the boys' computer, this adorable one is the sixth picture in the six folder.


Taken in 2005, the picture is representative of our last Christmas in Brunswick, Maine.

From left to right: Back: Brandon, age 13; Koby, age (almost 11)

Front: Alex: 2 1/2; Kaleb: 2 1/2

Brandon is now 16. Koby is now 14, and the twins, Kaleb and Alex, are now 7 years old.

I have not viewed this picture in quite some time, and I am just amazed at how far Koby has come since then.

This Christmas marked the beginning of End Stage Renal Failure for Koby. He had suffered with the kidney disease, Fanconi's Syndrome, along with the rare metabolic disorder, Cystinosis, all his life.


One can tell by the photo that he was very small for his age. In fact, he visited with his nephrologist in Portland, Maine two days prior to Christmas and weighed only 39 pounds, and was just over three feet tall.


His kidney disease would not allow him to grow, even though we were administering growth hormone injections every day. His body was not retaining all the vitamins and nutrients enough to support growth and weight gain.


He turned 11 at the end of January 2006. Little did we know what this next year had in store for him.


By the Spring of 2006, we knew that his kidneys would not survive much longer. We frequented his nephrologist for labs to monitor his kidneys' function. They were deteriorating rapidly!


This was also the time my husband was due for orders to a new duty station. We worked frantically to find a locale where Koby's medical needs would be accommodated. The Navy's Exceptional Family Member Program was there to assist us in meeting his needs.


In June 2006, we relocated to NTC Great Lakes, IL, thinking he would be seeing a new nephrologist in Chicago. Tricare, though, was not contracted with the Children's hospital in Chicago.


Instead, we had to travel numerous times to Children's Hospital of Milwaukee -- 75 miles away. I am certain, had Tricare allowed, that Chicago Children's Memorial Hospital would have been just as good. However, we are forever indebted to the transplant team at Children's Hospital of Milwaukee, Wisconsin. They literally saved his life, and continue to provide the care he requires.


On the 19th of December, 2006, Koby had a kidney transplant which changed his life tremendously for the better. Koby was fortunate enough to never have to undergo dialysis while waiting on a list for a kidney.


My brother, Joel Ray, ended up being a perfect match! We are forever indebted to him, as well. He made the ultimate sacrifice for his nephew, and we will never forget his graciousness.


Joel was living in Nashville, TN at the time, and had begun all the donor testing down there. Just as soon as he found out he was a match, he dropped everything and drove to Illinois to complete the process.


He lived with us for almost two months prior to and after the surgery. He, then, moved back to our home state of Texas. We just cannot thank him enough for all he has done! Thank you, Uncle Joel! We all love you so very, VERY much!


Koby just graduated Junior High yesterday. He is now 14 years old, and has grown so much since the transplant. He is now almost 5 feet tall, and weighs just over 100 lbs. He is now . . . finally within the normal range in comparison to his peers.


Here is a picture of our graduate, taken yesterday. One can definitely see how much he has

grown, compare to that Christmas picture taken just 2 1/2 years ago.







Now, for the six bloggers I am tagging:








Georgia Angel ~A Southern Aries Woman


CageFreeMonkeys


A Place of Comfort










12 comments:

Kelly's Ideas June 9, 2009 at 12:09 PM  

You made me cry! What an incredible story of love and sacrifice. You son is a brave and incredible young man and your brother....just wow.

Thank you for sharing a part of your life with us.
Love,
Kelly

Debbie June 9, 2009 at 12:50 PM  

Wow...What a story...I had no idea when I tagged you for this I would be crying while reading your post. What a wonderful family you have and what an incredible mother you are. Thank God things are better and what a what a brother you have! Thanks for sharing all of that with the rest of us and I will be sending blueberries and lobstah soon!!

chicamom85 June 9, 2009 at 1:44 PM  

I love your beautiful story, I could read it over and over. It gives me hope for my husband.

Thank you
Anne

Jo June 9, 2009 at 4:36 PM  

Wow what an amazing story! What a blessing your brother is. Thank you for sharing.

Mom's Fortress of Solitude June 9, 2009 at 10:23 PM  

Kelly:

I didn't mean to make you cry. :o( Thank you for reading and commenting.

Mom's Fortress of Solitude June 9, 2009 at 10:26 PM  

Debbie:

Woo hoo! Lobstah and bluberries! Man, I miss that accent.

I was known as Angelar, and my friend was Sabrinar. lol

I used to laugh each time my sociology professor said the word 'idea.' It was always, "I Dear."

Too cute!

Mom's Fortress of Solitude June 9, 2009 at 10:27 PM  

Anne:

I'm so happy Koby's story has inspired you.

I left you a couple of comments on your other blog, too. :o)

Mom's Fortress of Solitude June 9, 2009 at 10:28 PM  

Jo:

You are more than welcome. I'm glad you enjoyed this story.

I'm off to visit you, right now. :o)

Holly Nappi Collins June 10, 2009 at 1:13 PM  

What a wonderful story, I am so glad everything has worked out so well for you, your son and your family!

Ms. Bar B: June 10, 2009 at 2:48 PM  

That is amazingly beautiful!! Thanks for sharing.

Dee-Zigns Handcrafted Jewelry June 11, 2009 at 9:01 AM  

"Gulp", wow, I'm speechless. This is such a moving story and so beautifully written. Thank you for sharing, you have a rock star in your brother ;).

Nikki @ Euphoria Luv July 15, 2009 at 7:39 PM  

oh! I didn't even know I was tagged. Will write my post. Thanks for sharing your story. Very touching

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Mom's Fortress of Solitude by Angela McCoy is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License. Based on a work at momsgreatescape.blogspot.com. Permissions beyond the scope of this license may be available at http://momsgreatescape.blogspot.com/2009/06/contact.html.

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Angela McCoy is a freelance writer/editor, military wife and work at home mom (WAHM) to four boys with special needs. Her writing encompasses a myriad of topics -- Autism, ADHD, Auditory Processing Disorder, Cystinosis, Fanconi's Syndrome, kidney transplant, and more -- influenced by her two teenagers and seven-year-old twins. She considers writing to be therapeutic and utilizes her skills to counsel and inspire her readers. Angela is a quick-witted, 'no holds barred,' tell it like it is' humorist who has learned that laughter truly is the best antidote to life's adversities.

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