I don't even know where to begin.
SO much has happened in the last couple weeks.
Cooper had his second MRI on March 17th. My anxiety was much higher this time. I think partially because all of the health concerns our country is currently facing but also because I've come to terms with the fact that something is seriously wrong with my baby and I feel like we're losing valuable time trying to figure it out.
Once he was sedated for the scan they had a hard time getting his airway to stay completely open. He was never in any sort of distress and continued breathing on his own the whole time but it was terrifying. They explained that because of his low muscle tone, his airway closes a little easier than most after falling asleep.
Other than that the MRI went fine and we were able to go home less than an hour after he woke up from sedation.
The next day we had an appointment with his pulmonologist (Dr. G). We were referred to him by Cooper's pediatrician because of his lingering cough. We didn't really know what this appointment would entail other than him listening to Coop's lungs and maybe prescribing something to help with this cough.
But this appointment would prove to be the absolute most important appointment we've had.
This doctor actually listened to me. He asked if we had considered the fact that Cooper might have SMA (spinal muscular atrophy). I told him about our experience with the neurologist and how we were told Cooper wasn't sick enough to have SMA. Dr. G said that's absolutely not true and if he had to guess he would say that's exactly what Cooper has. He read a few descriptions of SMA and it described Cooper to a T. Even down to the "finger trembles" some kids with SMA experience.
He suggested we get a swallow study done to check for aspiration which could be the cause of the cough, as well as schedule a visit with genetics.
I left that appointment feeling thankful but so emotional because I felt like I should've been fighting harder for Cooper to be tested. I've questioned SMA since December and now I have a doctor telling me he's almost sure that's what he has!
By Friday we had cancelled our appointment with neurosurgery at Nationwide and scheduled an appointment with genetics in Toledo. We were finally getting stuff done. Rapidly.
It was quite the wild week. But it was nothing compared to what was in store for us.
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