Today was a rough day. Merritt was scheduled for three procedures today. The first was a g tube. The second was biopsies of his esophagus and stomach (done during the g tube portion), and then third was an ABR which is a form of hearing test that gets administered while a patient is asleep to see how the brain stem responds to sounds. 

Merritt’s g tube surgery was successful and quick (along with the biopsies), but we were shocked to get a negative result for Merritt’s hearing test. Turns out, Merritt has developed moderate to severe hearing loss (same level as his sister).  This was shocking to us, because we know for a fact that Merritt does not have the same gene mutations that his sister carries and he passed his first newborn screening in the hospital and a subsequent ABR at two months old just to be safe (since it runs in our family). 

I am less stressed out about the diagnosis, and more stressed out about how long it has taken us to discover this news.  Our family knows how important it is to get a child aided as quickly as possible because the longer a child goes without sound stimulating their brain stem, the more it can “die” from being under stimulated. We had Madi aided at three months old. So you can imagine my despair in finding out this news and knowing we might be delaying his development even more.  I rationally know that none of this is my fault, but mom guilt is real and hard to control. 

Lots of tears were shed today. It will be ok. We know how to proceed from here, but it is hurting my heart. And does it suck to have yet another diagnosis for this boy?! Yes… yes it does…. But do we move forward… yes…. Yes we do. 

Merritt is recovering well now after a hard and sad wake up from the anesthesia for a few hours. Hopefully we will be discharged sometime tomorrow, and then it will be time to rest and focus on getting his sister through her surgery. ❤️❤️🤍