January 5 2018

Arkan, Our Brave Warrior

Three years ago we were blessed with the birth of our long-awaited second child; our handsome, smart and very charismatic baby boy Arkan.

As expected, having an eight year age gap between him and his brother Adam wasn’t the easiest ride, mainly the two not having much in common, each belonging to a different world of interests. So although they actually love being around each other, they don’t really play together that much.
One would be reading, while the other watches cartoons, one would be writing his homework, while the other scribbles all over the walls, one would be singing, while the other screams his lungs out; but they still managed to find a few things they actually enjoy doing together. They love playing hide and seek, having foam sword fights, and of course, they like playing video games together. But I must say, the one thing they enjoy the most is wrestling! Yep, you read that right, they do wrestle, a LOT, and don’t be fooled by Arkan’s little body and young age, he has one hell of a headlock that even mom & dad find hard to escape from.

What I’m trying to say I guess, is although we would’ve loved to see our sons having more in common, spending more quality time together and not just around each other, and although our experience might not be an ideal one to many, but to us, it is definitely a very exciting and a very rewarding one, despite all challenges that make it overwhelming at times, and looking at the bright side, the best part about such an age gap for us as parents is not having to deal with siblings’ jealousy or rivalry… almost! 😉

And as my baby boy grew, so did his struggle… and ours.
See, Arkan was hitting all milestones he was supposed to, until the age of 8 months, that’s when he started showing difficulties in feeding. I started talking to doctors about my concerns, but was asked to be patient and wait.
With every passing day, his feeding would regress, and on top of that, he started showing signs of speech delay. Then the problems kept adding up: balance problems, being in pain most of the time, having mood swings and getting really cranky and not being able to express himself in words.
To make a long story short, my son’s situation was worsening by the day, and all my trips to doctors were in vain. I was considered an over-protective paranoid mom, and was constantly asked to be patient and wait it out… because my son looked “perfectly healthy”.
But I didn’t wait, and I’m glad I didn’t, I felt something was off, so I followed my gut, put my life on hold and started educating myself in every aspect of child development; I read, researched, investigated here and there, I consulted a number of physicians, I had my son assessed _physically & developmentally_ by every specialist you could think of,  and every time I’d get a diagnosis, I would go and read about it, if I felt the diagnosis didn’t fit my son’s condition, I’d simply ignore it and keep looking.

I kept doing this, until finally, last summer _yeah, it took me two whole years to get the right help_  August 22nd, 2017, we got a proper diagnosis for my son’s condition. That day I realized that all my son’s tantrums were not those of the terrible twos, but those related to pain and frustration caused by: Chiari Type I Malformation, a congenital structural defect in the base of the skull and cerebellum that causes a brain herniation, where part of the brain (cerebellar tonsils) descends into the spinal area.
Many refer to it as a rare condition, but it’s not actually (about 1 in every thousand people have it), it’s just hard to diagnose, and is commonly misdiagnosed as migraines in adults.

In October, Arkan had a brain decompression surgery (not just a bone decompression, but also a duraplasty and the whole nine yards really) it was a nightmare to make the decision whether or not to operate on him, given the risks and his young age, but we made our decision after extensive research and consulting, and we pray to God every day that we made the right choice.

We were told that it’d take an average of 6 months for any significant improvement to show.
It’s been only two months since the surgery, we had a few set backs, unfortunately, but his health is now stable, thank God.
As for any significant improvements in his preoperative symptoms, there aren’t any yet, except for the fact that he seems to be in a lot less pain.
Till today, he’s still struggling with feeding, and he’s still completely non-verbal.
And as hard as it is, we’re trying to be as patient and as optimistic as possible.
We’ll never give up hope, and we’ll keep supporting him every way possible, and we’ll do all we could to hear his voice and see him devouring one of his favorite meals as kids his age do.

We love you our little Chiarian, our strong brave warrior, Arkan.

 

P.s. For more info. about Chiari Malformations, also check Conquer Chiari.