The various standardized testing we did at the end of February (for the school district) and at the beginning of March (for the NICU follow up clinic) showed Job's receptive language to be in the 98th percentile, yay! He understands most of what he hears!
But his expressive language was in the 5th percentile. This wasn't a surprise to us, but it was still disheartening to see such a discrepancy and to see "on paper" how very delayed his expressive communication is.
But then he just started talking! For the first time in his life he began to consistently imitate the sounds we made for him. It's as if it finally clicked that expressive language is magical. Say something and get a response! We really didn't do anything differently - we've always talked to him and read to him and modeled communication for him in dramatic ways, but with little to no appreciable response from him.
He's been in weekly SLP since recovering from surgery and I think it just took some time for him to feel better from surgery and realize he *could* make more sounds.
As he is about to turn 3 years old, we will no longer be eligible to receive our speech therapy through our local Birth to Three program (A Step Ahead Pierce County) and so I scheduled an eval with a SLP at Mary Bridge on March 12th. I sat there and told the therapist all about Job's long medical history and my concerns and frustrations but then also told her how excited I was to suddenly see such incredible interest and effort on his part. "He's talked more these last two weeks than he ever did in all the months previous, combined!" I told her, just bursting with pride and hope.
And then we came home and he took a nap. And woke up barely whispering in a throaty, raspy growling tone. I chalked it up to overexertion but when he kept whisper-growling all the rest of the week, I started calling Otolaryngology.
This dramatic change in his voice and the amount he spoke was concerning enough, but paired with a huge difference in his food/drink intake beginning the weekend of March 9-10th, this gave me enough "ammo" to convince Oto we needed an appointment sooner than our scheduled April 10th appointment.
Job's left vocal cord was damaged in his first open heart surgery when he was five days old, but then he learned to compensate with his right vocal cord to at least swallow safely. We couldn't conclusively attribute his delayed expressive communication to his damaged left vocal cord and when I started trying to advocate for more testing as to why he wouldn't/couldn't talk, his heart started failing and cardiac testing to get on the transplant list took precedent over Oto appointments.
But then his right vocal cord was damaged during intubation in his October 2018 transplant, and he was again aphonic and completely unable to swallow. I said I wouldn't leave the hospital without an Oto consult, because I had long be concerned with his vocal cord function and I wasn't content to just wait and see if his function would improve.
So on November 9th we gave a short acting botox gel injection in his left vocal cord. The procedure itself only took about 20 minutes, which was a surprise to me - I remember not even having enough time to go get tea before they were calling back to see him. Recovery seemed so smooth, too. Even immediately post-op his voice quality was incredibly improved! He ate and drank well (or at least well for an opinionated toddler) and began to make HUGE strides in his expressive speech.
Until (as stated) March 12th, when he woke up from his nap with no voice and a diminished ability to swallow.
We were just starting to feel pretty confident about making our way through cold/flu season unscathed when Job decided he missed all the attention and wanted a little hospital stay to spice things up.
I took him to the Mary Bridge ED in the middle of the night (on March 25th) when his work of breathing increased and his sats plummeted. I thought about driving up to SCH but felt he was in too much distress to drive so far. And sure enough we transferred up to SCH by ambulance so that the transplant team could assess him. He just needed to be on oxygen for a while and then headed on home.
It was a hard hospitalization because it was such a comparatively "minor" issue that I really struggled with bitterness and discontentment that we even had to be there, at the hospital, even while also being grateful we have such an attentive team so dedicated to Job's care.
Here's to hoping Job recovers quickly (even though immunosuppressed) so we can get that gel injection soon!
