Happy Birthday, Little Bubba Boy!

For the past three years, March 1st has been a day which we all have marveled about--the birthday of our little Bubba Boy--Cannon.  You see, he has a disease called "Menkes," which is a copper deficiency disease.   Children born with it usually have very short life expectancies, but little Cannon continues to amaze us all!

 Cannon, Three Years Old

Cannon, Two Years Old

Cannon, One Year Old

Cannon, at birth - Very wrinkly skin, and coarse, twisted hair.  But other than that, he seemed like a healthy little guy.

 He has always had the most beautiful eyes.  Although he was a little slow compared to other babies his age, he was trying to roll over and would bat at his toys.

He was even trying solid foods. 

 

At about six months, Kent and Natalie got help from a therapist who showed them how to work with his muscles since he was not progressing as fast as he should physically.

 Instead of his muscles getting stronger, they started getting progressively weaker.

After doing a great deal of research on line, Kent finally figured out what may be the problem because of the many symptoms little Cannon had--I will never forget the day he called to tell us what they thought, but hoped earnestly that he didn't have which was Menkes.  But after he and Natalie took Cannon to the most renowned doctor in the country who was in Maryland, they found out what they had feared was true--It indeed was Menkes.

Because of his inability to produce copper in his body, he was only able to move his muscles for about the first six months because of what he had received from the umbilical cord before he was born.  Now, even with copper shots, they would never make up for what he lacked.  This indeed was devastating news!

 He could still suck on a binky, but soon he was unable to nurse or drink from a bottle.

It became just too difficult to swallow--that takes muscles to do so.  Therefore, he was given a feeding tube through his nose that went straight to his stomach.

He still had that smile which just warmed your heart!

 After a short amount of time passed, the doctors told Kent and Natalie that Cannon needed a feeding tube to go straight to his stomach.  That had to be done at Childrens' Hospital in Seattle.  George and I were with Kent and Natalie as we traveled to Seattle for the surgery.  It was a very, scary time--Cannon was in such a fragile state, anything invasive like this was scary!

 

 

Cannon loves the sound of his mother's voice.

 We were all very emotional as we sat in the waiting room with our little Bubba Boy.

 Bless his little heart--still smiling as he waited, too, not knowing what he was about to have to go through.

 Cannon has a brother and sister who love him so much--and, as you can tell, he loves them!

I went in with Natalie as we dressed him in his little hospital gown.

 As we handed him over to the nurse and anesthesiologist, we told them, "Please take care of our little Bubba Boy.  He is such a special little guy to all of us."  They promised that they would.

 We spent some anxious time in the waiting room, then moved to his hospital room where they would be bringing him back.  Soon, we heard a familiar cry, and he was back with us again.  Now, no more feeding through his nose.  The food would go directly into his stomach.

 

More information and techniques for Kent and Natalie to learn--the continuous feeding machine.  Ever since the day he had the tube inserted, they have tried off and on, but mostly chose just to feed without it.  It is so constricting of where they can take him.  However, it means remembering to feed him every single hour!

We said good-bye to Kent and Natalie and the kids as they drove back to Washington, and George and I left to join John and Alison and their family for Christmas.  George and I kept saying how brave this little family is for all they have been through.

 

No one quite knew what to expect next because of this disease being so rare, but the smiles became fewer probably because of the effort, as well as he was getting weaker as time went on.

That didn't stop anyone from talking to him and paying attention to him.

A little over a year ago, Kent was playing church ball when all of a sudden, he heard a pop, and he felt his leg give way.  He had broken his Achilles tendon!  They called to ask if I could come and help out, which I gladly did for a couple of weeks.

 One day, when I was changing Cannon's diaper, I noticed that around his feeding tube was very red.  I mentioned it to Natalie who showed it to Kent.  He said, "Let's just watch it very closely."  Soon, within about an hour, it was getting very red and spreading bigger and bigger with red lines going out from it.  They called their friend who is a doctor, and he told them to take him immediately to the emergency hospital.  Kent stayed with the other kids while Natalie and I took Cannon to the hospital.  The doctor there said this was extremely dangerous and put him on the most high powered antibiotic available.

 He ended up staying in the hospital for three days until they could get control of the infection.

 . . . .

The story of Cannon sort of reminds me of the movie, "The Curious Case of Benjamin Button."  Benjamin Button lived backwards, from being an old man to going back as a very young baby.  This is what it has been like for Cannon.  He went forward for about the first six months of his life, but is now like a newborn basically.  However, that doesn't diminish the fact that he is absolutely the sweetest little guy you could ever meet.  When you hold him, you feel the presence of his pure spirit.

He has all the love any little guy would want from his loving mother and father, brother and sister, grandparents, aunts, and uncles, cousins, friends, etc.

He is a Cougar fan along with his cousins and brother and sister. 

Cannon's cousin, Kade, even put his name on his arm to dedicate his championship football game to Cannon.  He played his hardest, as did the other team members, and they won!  How thoughtful for his cousin to think of doing this!

Each year, Natalie plans a wonderful party for little Cannon.  They release balloon lanterns as a showing of being free which as of now, his body doesn't allow him to do.

The town newspaper usually picks up the story because of the unique little guy he is.  No one ever meets him without going away thinking of the special young man he is, and the gratitude they have for meeting him.

In addition, Natalie's brother started a race where all the copper pennies that people brought to be in the race would be donated to the Menkes Foundation for finding a cure.

Yes, we all dearly love our little Bubba Boy.  He has been an inspiration to all of us.  I don't know of any little guy who has been through more or continues to go through more than this little guy does.  He struggles with every breath he takes--but he continues fighting on.  And we so respect his wonderful family who takes such good care of this special little guy.  It has been a giant task every single day in caring for him, but they consider it a blessing.  We all only hope to live good enough lives to be where we know Cannon will be some day--in the highest realm with our Heavenly Father.

Happy Three-Year Old Birthday, Cannon!  

With so much love and admiration, 

Grandpa George

and Grandma Laura