Last night after the kids were all tucked in to bed dreaming (ie passed out in the living room watching movies), I walked to the mailbox. I took a deep breath of fresh air, gazed up at that great big universe of twinkling and shooting stars, thanked God for our farm and that I survived another game night, freaked out a little when the cats jumped out at me in the dark, only their little devil eyes gleaming.

In the mailbox was the final report from the ENT. So many times, the in person visit/results tell us one thing and then the report comes and it is totally different.

But here it was in writing. Zap has perfect hearing. No more fluid. Cleared from needing follow up. No surgery required.

So grateful. Not that I was scared or worried about him being deaf, he would have rocked that out of the park and we would have learned right along with him. This however has been a test of faith, of prayer, and a demonstration of how God works in mysterious and wonderful ways. He put in our lives the right people, the right healers, and the open hearts to try non traditional medicine. Now my baby doesn't need surgery.

For the record, I think that the tinctures we have been using for various ailments have made a HUGE impact in our health, but when I take ground ivy tincture, even my ears start draining. I was skeptical, but two of my good friends and people I really trust recommended it. I am so glad. Zap asks for it and points to his ears. It doesn't taste great so I can't help but think he understands what it is for.

Which leads me to another thought.....as parents of special needs children, dependent on the medical community for the health and well being of our children, but also as people who believe that natural remedies and good nutrition can be the best even better medicine, we are like rocks in a hard place. The balance is a hard one, and everyone walks that precipice with different shoes- some dance on by, some shiver with anxiety, some jump, some just curl up in  a little ball and beg to go home. We are all there though, at that same horizon, that same scary hard to explain place- feeling alone and isolated and misunderstood. All of us, the kind nurturing mothers, the fearsome bear mamas, the bitches, the fragile, and all of them are all of us. Some of us are hard for the nurses to deal with and some of the nurses are hard to deal with. It is a complicated dance, but really we are not alone.

Facebook has connected me with families all over the world who have 22q children, with published authors with the dx, with expecting mothers full of fear, with families whose children are near death, thriving, struggling, all of that. Life is messy and wonderful and short. One of the hardest things I have learned is that I can reach out, cry, ask, and help. Just when I was feeling the most alone, the world got a little bit bigger and more loving.

FB has also connected me with more families near me with special needs children or deepened casual relationships I already had.

This last 18 months has been interesting.

Drought

I'm not sure how interesting people will think this is. The hole is about 7" deep (not 10 as I said when filming). I was getting ready to plant raspberries and was spraying a little water in the hole . . . except, the hole wouldn't fill up. This seemed like a good indicator of just how dry our soil is right now so I took the video.

4th of July and Summer Fun

Scootin, scootin. Zap figured out how to mount his car and make it scoot.  Working on turns, has forward and back down. So so adorable!

COUSINS!

Favourite food, always. It is Blueberry Girl's forever perfect food.  She needs nothing else. She also informed us that rhinoceros EAT children. Oh my, to be four.....

We have a new dock. 3 years after falling through it to my hip and numerous cobbled repairs, we decided to fix the darn thing.

Oh yeah. Zap is a fan of watermelon too. He ate his weight in it.

Look at that perfect decking. It is super supported underneath too.

Most of the pond was thick with algea last week. We finally decided to stop waiting for mother nature and treat it with copper.

Much better after just 3 days.

Our new fire pit. Now we need to make good seating around it.

FISHING! The fishing is super good at our pond, especially for kids. Our sweet princess pole catches the BIGGEST catfish.

So we have to finish rehabbing the shelter and tables, but the picnic area is almost ready. It is very under used and offering it for free camping to friends has not helped. We are thinking of setting up a campsite and charging, maybe that will get people to realize how lovely it is to camp without drunken strangers a campsite away. I really love private camping, public campgrounds freak me out. Anyway, that's what we have going on.

Oh wait, there's more. I'll save that big announcement for later though!

Little Miracles

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.