The J-Man

The little guy sitting in the high chair in the middle of everything is The J-Man.  He is my sunshine!  This picture was taken on his 3rd birthday - yes, that would be Christmas Day.  He is surrounded by (at 12:00) his sister, Kaleigh, who he calls, "La La."  Sitting on the floor at his feet is his big brother, Maddux, who Jacoby refers to as "Pow Pow."  Over his right shoulder is his great-grandmother, my Mother, who is known by everyone as "Grannie."  The two boys on either side are his cousins, Luke, (in purple) and Logan (in green stripe shirt).

And yesterday when I went to his house to keep him for a little while I found this little bit of sweetness had climbed up on the couch and decided to take a late afternoon nap.

What's so unusual about this is that Jacoby very rarely sleeps.  Because of his IS (Infantile Spasms) his little brain doesn't shut down long enough to allow him to sleep very much.  His entire life he's been able to function on an average of just 5-6 hours of sleep a day.  He may have slept 8 hours at a time, but that is very rare.

He has taken every kind of medication known to mankind to help him sleep, but much to his poor sleep-deprived parents' internal clock-works, he still doesn't sleep very much.  Or at least not very long.

But the fact that he doesn't sleep or everything that does not function as it does in most 3 year olds is not what defines Jacoby.  It is his sweet personality and easy dispositition and those adorable curls that wins your heart.  While I was taking pictures of Mother's Spring flowers the other day, I was able to snap this precious picture of her with Jacoby in the background.  His very favorite thing in the world is to be swung around.  He will seek out your hands and coax you to lift him off the ground and swing round and round.  Pure JOY for him!

This was taken about a month ago while he was in the doctor's office.  He was knocking on the door and everything else in there testing out the sounds and to let everyone know that he was in the building!

The world is Jacoby's playground but he needs to explore it very slowly and with much caution.  Don't know if it's due to the fact that he is blind or if he is just having to think very, very hard on processing just what every little nuance in life means and if it's safe to continue.

I'm not saying that he is slow because if you offer him something to eat that he doesn't approve of he can let you know very fast that that's just not going to work.

His oral sensory disorder and low-tone muscles prevent him from eating like normal kids.  In fact, his Mom, Melanie, has done an absolutely wonderful job keeping him one step away from having to have a feeding tube.  He goes to a speech therapist twice a week for close to two years now to just work on his eating abilities, and he is offered a wide variety of foods all day long.  Still, he prefers his bottle.

He's funny in that one of his biggest sensory issues is textures.  Where most three year olds love a squishy slice of cheese, Jacoby couldn't be more grossed out because of the "yickiness."  Won't have anything to do with it.

There was a time that I thought he would never learn to walk due to his inability to eat and get stronger; there for a while he looked so mal-nourished that I thought he might not even live.  But he did learn to walk.  And he walks alot now.  In fact, he is probably up on his feet and walking around a good 18 hours a day.

When he was just 7 months old he began having seizures.  Started the last day Melanie was finishing up her requirements to get her teaching certificate.  Melanie and Bryan did their own research and discovered what they thought was happening and what Jacoby had.  They were the first ones to put their finger on something called Infantile Spasms.  They were able to film little Jacoby throw his arms out repeatedly and sent it to their good friend and family doctor in an email during the night.

Jacoby was referred to a neurologist who immediately agreed with their diagnosis and put Jacoby (and Melanie and Bryan) in the hospital to begin a regime of ACTH.  This miracle, and extremely expensive, and sometime controversial drug stopped the seizures almost immediately.  Most IS children are not this fortunate to get such rapid results.    But every seizure damages a child.  The verdict is still out on just how much damage the seizures and the ACTH have done to Jacoby.  ACTH is controversial because of the side effects it can cause but when you're up against the wall and you've just got to do something, anything, to stop the seizures in your baby, you have to roll the dice and do what you can to just save the child.  

Jacoby was saved.  He is a blessing.  And he has a purpose.  That purpose is what makes us love him so much and so passionate to give this child a fighting chance.  He is surrounded by the most loving family you will ever find.  God knew what He was doing when he gave a child like Jacoby to parents like Bryan and Melanie.  Sometime in the future I will write just how special Melanie and Bryan are.  But today, I'm thanking God for the blessing he gave us named Jacoby.