FOR 4 MONTHS we’ve been waiting on a final diagnosis for Gannon, we’ve been patiently awaiting his genetic testing results and a full month later than expected, Craig and I got the phone call while we were on our date on Wednesday. The moment you’ve been waiting for:
Gannon has nothing.
No connective tissue disorder, no Ehlers Danlos, zip, zilch, nada.
Which is good. It’s confusing and a little frustrating but it’s good. It would be so nice to put a bow on all of his symptoms and say “this is why he is the way he is” but Gannon is totally normal. Which is good. However, this doesn’t explain the:
Extreme constipation, PFO, anal achalasia, talus hindfoot valgus, undescended testicles, bloating, fibro lipoma of his spinal cord, dairy sensitivities, inguinal hernias, dilated pulmonary artery and aortic root, speech delay, occasional wheezing, gross motor delay, eczema, his velvety stretchy skin and his joints that literally fold in half to the point where we can’t get a normal shoe on his foot.
But, all those are manageable. Gannon lives a pretty normal life. Gannon isn’t in pain. Gannon is growing well. Gannon should by all means continue to live a fairly normal life.
When we first started investigating Gannon’s symptoms more seriously, at about this time last year we were waiting to get into Milwaukee, he was still vomiting daily, couldn’t poop without screaming, and choking on graham crackers. He was missing milestones and had undiagnosed significant hearing loss. He hadn’t gone for any of his 6 procedures/surgeries yet that he has had in the past year.
A year ago, we did not have the answers we have now. And even though this feels like a NOT answer, it’s still an answer, one that thousands of parents all over the country pray and pray for. So today, I’m celebrating Gannon’s NEGATIVE genetic testing results. I’m also patting myself on the damn back looking back on how far we’ve come in the past year.
I’ll never stop fighting for you Gan <3
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I’m glad the results are in and Gannon is normal but has some issues. I think it would of been nice if something would of popped up, then you could label it and have a plan of action forward as his symptom happen. Then hearing that he has nada, zilch nothing is wonderful news in itself. He is such a lucky boy because you both advocate for him and you have come a long long way in the past year.
I’m glad you have answers of a sort, even though they aren’t as helpful as you’d hoped. Now you can move ahead and just work on therapy for the problems . Gannon is very fortunate to have parents so committed to his welfare.
So glad Gannon’s genetic testing turned up nothing, even though finding something different would have made your life a little easier. We all want to slap a label on everything, like that is going to be the magic carpet ride to fixing everything because we can put it in a box and do X, Y and Z to make it all better. We want a road map to send us to the “right” place and make it easier to get there. Your attitude is perfect – Gannon is Gannon and you will deal with each problem he has as you need to. It is obvious that Gannon is loved tremendously, that he is happy and growing at his pace. I hope you can find a fix for everything else that makes life difficult for Gannon, but fighting your way to a goal does make you stronger (like your awesome journey to be healthy)! At least you don’t have to worry about the “what problem will he develop next” when you get a genetic diagnosis of a syndrome.