Update on baby Zap and 22q11 Deletion Syndrome:
We had a couple more things to do this year, things to check on and worry about. It took 6 months to get an appointment with the eye doctor specialist. The appointment itself involved lot of waiting, no easily accessible bathrooms, Blueberry Girl having issues with there not being a bathroom in the office, and then more waiting.
His eyes are fine.
He's one cool dude riding home.
Then we have been going back and forth since March about his ABR results. The audiologist at the test said he's not deaf and when he gets over his cold the slight loss from fluid in his one ear will go away.
The ENT disagreed and wanted tubes put in ASAP. Isaac had never (on record) passed a hearing exam in his left ear. Long term fluid can cause permanent damage that is not reversible or helped with hearing aids. He'll have speech issues. Cognative delay. Etc. Etc. Scare, worry, fret.
I held my ground. He's not deaf. He responds to music, talking, whispers. I know my kid.
The countered, he may have hearing in one ear and he can hear like he's underwater. COGNITIVE DELAY they emphasized.
To which I responded: Helen Keller, only not out loud to the doctors.
I pushed. A friend told me about
NUCCA therapy and how her deaf child with hearing aids no longer needs hearing aids. I know her daughter. She is a delight and wonder and hilarious. I know this mother and she is not easily fooled or taken in my unneeded medical work.
I pleaded with the docs, let us do 8 weeks of NUCCA then we'll talk. They said check in at week 4 and also chiropractic care is a fleecing scam, malarchy. It is waste of money. It doesn't work.
I cried when I got home that night. I was really really scared about him going under and having surgery. He's never had an ear infection, not ever. He's rarely sick. Never had anything that would cause him a lot of major pain, other than that vein blow out at a blood draw. I cried. I stressed out. I cleaned things and didn't sleep well.
At week 4 the ENT said the fluid is worse. It is in both ears now. Still think chiropractic care is a real thing? I was devastated. We skipped that weeks NUCCA appointment. The ENT said next visit we'll talk about when to schedule the surgery. The only thing that will help Zap's hearing.
Still I was now in the habit of lymphatic massage when Zap nurses. A friend suggested a tincture of ground ivy and another swore by it for ear fluid drainage. She gave me a bottle.
3 weeks to go. We went back to
NUCCA. The chiro said he's holding adjustments. Doing great.
2 weeks. Isaac started asking for the tincture drops after breakfast.
1 week. I was getting super nervous.
And day of the appointment I brushed my hair, put on fancier than farm chores shoes. Gave Zap a bath. Met Chad on lunch break and headed over to the ENT.
Remember, to talk surgery. I had in my head to put it off as long as possible to get him bigger, stronger, and come to terms with it. I had in my head to ask it to be done here in our town, I asked the local hospital and they said they could do it if the ENT was willing to come there. I had in my head to submit to medical fate and just pray that Zap not be harmed or in too much pain.
But his ears were fluid free.
And he passed the hearing test in both ears. Perfectly.
We asked if we needed to come back and check again in a few weeks.
The ENT, was gracious. We did not flaunt the "malarchy" working, We did not do happy dances in his office. We asked questions about long term care. We asked what he thought about the 22q diagnosis. He did say Zap has the 22q look. That he did not doubt the diagnosis.
He said we're cleared for ENT visits. He'll send the report to the 22q team we see in MN. Cleared.
Cleared.
Zap is not deaf.
I don't know which of the hippi dippi "snake oil and rain dance" treatments worked. Maybe it was prayer alone. Maybe it was prayer that brought these friends into our lives that handed us healing tools. Maybe the docs were wrong all along. Maybe just waiting allowed things to work themselves out.
I am humbled by His grace. God is good all the time.
What I hope is that someone reading this needs this. Maybe, just maybe more kids can avoid surgery and have their hearing restored.
Oh yeah. he is also SUPER adorable cute. Seriously.
I wonder too if jumping to surgery is just our way of doing something now. Waiting is harder. Same thing with speech therapy, OT, PT for babies. We are so afraid of waiting that we jump into expensive interventions to feel like we are making our best efforts and at the very worst it can't hurt. I think it can hurt. Beyond pushing a kids ahead of their natural development, the national averages are skewed and my kid is considered way behind instead of just on the outside of normal. Of course I am not talking about severely disabled children, but kids who are just taking their own sweet time, like Zap. Putting the additional guilt, financial burden, time in therapies, stress on families isn't fair. There is lots of talk about how we are pushing children academically too too young and younger still every year. THIS starts as babies! Not walking or fully verbalizing at 18 months? Totally fine. I'm not kidding and I will not be scare tactic'd into dishing out money for surgeries and therapies just so he can keep up with an artificially inflated "norm".
Sit back. Play in the sun. Swing. Dance. Roll in the grass. Running can come later.
