Well, yesterday was exhausting but we are home now and I’ve had time to recover - so now I can update calmly.
I forgot to tell you one of the best blessings we had after the appointments Thursday morning! As we were waiting to be called for the lab draws, I heard on the loud speaker that they were having Catholic Mass in the chapel! This is new, & I thought well, it’s in 20min, maybe we can make it?? Long story short, we finished labs and potty breaks & still found our way to the chapel (although we were 3 min late). It was a tiny chapel and the priest was already preaching the homily! (Daily Mass can be fast - lol!) He invited us in and one gentleman moved so we could take up the front row. (There were only 2 rows, total of 8 seats. Although there was a man in a wheelchair there - so 9 people at the Mass.). The priest asked about us and finding out that all theee boys have a rare disease, he changed his homily. He looked at them and said “do you know the very best thing about you? The very best?” They just kind of smiled. “Jesus loves you!” he said. He then proceeded to talk about how special they were that Jesus loves them so much. It was a surprisingly moving Mass in a little non-denominational “peace chapel” with fish and water pictured across the walls and nonstop twinkling lights on the ceiling. And it was over in 15 minutes! (Which was actually nice because I wasn’t sure how long they’d last!)
So, that was Thursday and after I posted the update Thursday evening I was able to get some rest. That is, until 3:30am when Emmanuel came in with a full blown asthma attack. I had his meds and we got it calmed down after a little bit. He stayed in the room I was in and slept on the chair (his choice). Poor kid looked miserable the next morning!! His eyes were red, bloodshot and puffy, but at least he was breathing well again.
We had a lovely breakfast with our host family (always so kind and generous to us!!), and then off to audiology. Damian had a difficult morning and it seemed everything was setting him off. He sobbed into my shirt a number of times. But the audiology staff was accommodating and kind.
This time, Emmanuel gets the positive report - his hearing is perfect! Louis has reduced hearing at the higher frequencies that we had seen previously but hoped would improve. This is another reason we want to really get a better handle on the disease so that we can avoid further damage. Damian had negative pressure (they said probably from a head cold or something) and it did affect his hearing test, but no damage was seen in the function of the ear drum or inner ear. But if he’s not hearing as well, that’s why.
Most of the conversations with the audiologist were around preventing damage and her affirmation of getting the disease under control.
So, we leave it at that for now! Dr C will be (hopefully) connecting with NIH for advice on how to be more aggressive, Emmanuel needs to see an allergist, Louis needs to get therapy to deal with the medical trauma and emotional paralysis it seems to cause, and all theee of them need PT for their fine motor skills. (Dr C had reviewed the neuropsych final prognosis and that was all part of it. Slacker mom hasn’t set those appointments up yet. And that’s just me avoiding ... because you know how much I like adding extra dr apts to our schedule!) ;-)
Thank you all for your prayers! We keep going forward - many questions unanswered but we work to make life better in each moment. ❤️