I wrote this the day of Jordan's latest diagnosis. It has taken a while for me to fully come to terms with it and to share it with others.
Oh, look! Another diagnosis!
The same day we had Jordan’s MRI, we had the results. That is an awesome turnaround time (getting his Neurologist’s reports in a timely matter is a different story though). It has been determined that Jordan’s apraxia is caused by Polymicrogyria (PMG). Bilateral Frontoparietal Polymicrogyria to be exact.
(
Info on PMG)
Now, no one is sure how this will effect Jordan’s development, or if it will have any effect on his cognitive ability.
Here are some other things we don’t know:
We don’t know what caused the deformity. It could be a mutated gene or cause from CMV (
info here) (If I had it while pregnant
No idea if he is going to be more susceptible to TBIs or not. We wonder if it’s going to ok if he plays team sports at all.
We don’t know when the seizures will start (if at all). Probably adolescence, when all the hormones start going whack, but no one can tell us for sure
We don’t know if it’s genetic. If he decides to have kids of his own one day we have no idea if it’ll be passed down or not.
What we do know is this:
His PMG is located in the areas that manage motor control and planning for the mouth, tongue, throat (for swallowing and such) and fingers (exactly where Jordan’s trouble spots are, yay for answers!);
There is no cure for this condition, it is a congenital brain deformity and he will always have it;
Therapy can help (if not completely resolve) his apraxia and dysphagia (his swallowing issues) which seem to be his only symptoms of this rare brain condition.
Seizures are pretty much inevitable;
Jordan is a kick-ass determined little boy and will own any other diagnosis thrown his way!
Whenever one finds out their child has a disability it’s difficult, but then when you get another, more serious diagnosis, It’s almost like trudging through peanut butter mud. If you don’t keep moving and spreading your stress points out, you’re going to either sink or you’re going to lose your boots.
I just came to terms with his apraxia diagnosis, and now I learn he has a brain deformity! One that wasn’t detected in numerous ultrasounds but there were several signs leading up to now that were explained off as something else (or not explained at all).
As an infant my Bug was classified as Failure to Thrive (FTT). We supplemented with formula along with his nursing (and he was a barracuda baby too, no suckle reflex at all, he just gnawed his food out *owie*) and he caught up weight-wise by a year. The doctors were also worried about his head, though it was still growing, it was falling off the growth curve while everything else was on track. Ryan has a small head (sorry, sweetie. It’s true) and I just thought it was a genetic thing. At about 6 months, I noticed Jordan’s arms would get really tight and straight and he would zone out. I thought he was being silly until he had one of these episodes and a nail gun went off and he didn't even blink! An infant with perfect hearing not being startled by a pneumatic nail gun?! Needless to say I called his doc and got an EEG scheduled. It came back normal and he didn't have another episode again (that we saw). We are pretty sure they were absence seizures. He also only recently (like within the past year and a half) developed the “pincers grasp” which is a skill they should develop by a year old. His hands were always in fists, too.
ALL THESE SIGNS! And no one put them together. Hell, I didn't even THINK to put them together. My eldest child has a brain deformity… I just can’t see it. Dr. Shauh (Neurology of Wichita) saw it, ordered an MRI and we finally got some answers. We've got almost everything we need to speed on ahead.
He’s my little boy and nothing is wrong with him. He struggles with speech, he drools a lot, and he gets very frustrated sometimes, but he’s perfect. I couldn't imagine having a different child. Yes, I've mourned over both diagnoses. It breaks my heart knowing that he will have to struggle with things that come so easy to everyone else. He’ll have to fight through the stigma that is placed on those with special needs. He is special and wonderful and with his support system that quite literally spans the globe, he will achieve anything he wants. Stigmas and obstacles be dammed!
I find myself wondering about the future with a sort of dread and hope that can only come from parenting a special needs child. I KNOW he will make leaps and bounds with his speech, communication, eating, and fine motor skills, and I am extremely excited to hear “I love you” for the first time within the next few years. But I also wonder if all the successes and improvements he’ll make will be enough for him to live a happy and full life. I want him to keep reaching for the stars, but I also want him to know how far he has made it (when he reaches adulthood or even in his teen years).
He started in a special education preschool in February, and he is doing so well. He is thriving in school, like he was made for it! I am so proud of my Jordan! He is a resilient, sweet, sarcastic little boy and I wouldn't change him for any other in the world.
