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.

Running Ahead

Lately it feels like I have no time. No time for me or to blog or to even just sit down. Today I ran ahead of schedule all day and now I am sitting waiting for the last exchange of the day in a rainy parking lot with free wifi from the grocery store.

The rain is nice. The kids are sleeping. I have a big bottle of orange juice. We spent a good 2 hours today at the free Historical and Natural History Museum in Des Moines. I could spend all day in there. We came away with two things: the kids really like the exhibit on things doctors have removed from children's noses and they were sad to find out it is not on display right now. The second thing is that my kids really know their wild animals and birds.

The additional learning moment was when we saw the display on the white deer. I read the signage to them about how in 1987 a hunter killed one, there was controversy, and a law was passed outlawing the hunting of any wild white animals in Iowa. Lily's response? "Quick call dad! That means it is not actually open season on UNICORNS!"

We played a find it scavenger hunt in the Native American Art room.

We also decided that this museum is where we'll spend summer rainy park days. So cool to have this here and nearby and free. :)

Swings Under the Trees Day

Random Pictures from the MSI.....

Traveling With Kids

 This weekend I traveled from the rural countryside to Chicago with my three kids, ages 7, 3, and 1. I did this on my own, since my husband has to take care of the farm animals and we're lambing. 

For historical record, this was the weekend of the NATO 2012 conference and Chicago was on high alert. I was delivering pork and couldn't reschedule. Chicago folks assured me that it was safe and navigable. And it was.

This got me thinking about sharing how I do museum and field trips with my littles. They are pretty young, like to run, and like to touch things. One of them also likes to lick things and she's not the baby. I usually like to take them to places during off hours with little to no crowds, but in Chicago that was not possible. It was loud, crowded, and busy. 

Here are a few things I did to make keeping track of them a little easier on me and safer for them.

Wardrobe: 

1. Shoes without laces. I was not about to stop and retie over and over, nor did I want them tripping. 
2. All kids and mama in the same bright colour the entire weekend. We went to a thrift store and bought 10 orange shirts in various sizes. That's all they wore for the trip, even for jammies. This way they (and me) get used to seeing each other in that colour and .can register it faster in a crowd or a panic. 
3. Black permanent marker, written on their skin on their backs my name and cell phone number. Why? If they get lost, they can tell someone that's where the data is. It isn't somewhere they can see it and mess with it. If they were to get snatched (unlikely)- that data won't wash off and is easily checked for by authorities. I got the idea from a medical show, patients writing on good limbs or bellies to remind docs which things they didn't want done. It occurred to me that a kidnapper (again, unlikely) could change the kid's hair and clothes easily but permanent marker takes 21 days or harsh chemicals to remove if they even realize that the data is there. Ha. 
4. Hair. Down. They usually wear pony or pig tails. Let's just be honest here- in close traveling quarters that style is too tempting to pull and yank on and sibling fights will escalate. Trust me, I know.
5. Extra clothes. We had extra orange shirts. One of the girls threw up in the car, and changed right away into another orange shirt. Ice cream has necessitated clothing changes too. These are kids, kids eat messy. 

Food:

1. Protein for breakfast. Forgo the hotel sweets and go for eggs and sausage (except for the last day and sugar crash them for the drive home!). 
2. Bring snacks. We brought in our very small bag venison meat sticks, cheese, and water. 
3. Water. Drink it.
4. Dinner. Lunch. Snacks. Try and bring food the kids are used to. New foods or processed foods they are not used to eating can upset their bellies. Nothing like a vacation full of vomiting in the car, poop emergencies at the art museum.  Bring food you know they like and won't upset their digestion.
5. Get them to eat, but don't force the issue. Excitement makes my kids not want to eat. Pick your battles.

The baby:

1. Baby wear. Much easier than trying to haul a stroller. Sometimes my 4 yo will take off and I can chase her with the baby tied on. A stroller full of baby doesn't allow that.
2. Only bring out of the car what you will need for the amount of time. 2 diapers max for 3 hours is what I need. Why haul a diaper bag all over for that? Two disposables will fit one in each pocket.  Cell phone with one, credit card and cash in the other (front pocket). 
3. Water, sippy, snacks. I also try and plan the intensive activities around his nap (in the baby carrier) so I can guide and talk to the girls better. 
4. He gets the marker treatment too, but really, since he is ties to my chest, he isn't really a flight or baby stealer risk.

In the Car:

1. Music they like. Nothing is more aggravating to a kid than being forced to listen to talk radio for a 7 hour car trip. Find kid music that won't drive you batty either. I like They Might Be Giants. The Beatles is another favourite. Kids like oldies they can sing to. 
2. DVD player. When things get tense, break out a never before seen classic cartoon. Works every time. No one can say they hate it if they have never seen it.
3. New sticker books. Puzzle paper. Crayons. Fresh brand new crayons are always a treat at our house.
4. "Box of ponies". My girls love My Little Pony dolls. They can brush their hair and sort the dolls while buckled in.
5. Song games, I spy, just talking.  
6.  Lots of potty breaks, big movement breaks, fresh air run around and play breaks. They are kids and kids need to move. 

• General Reminders:
• Keep phone charged and on at all times.
• Don't carry a lot of cash
• Be aware of who is around you and where
• PAPER MAPS- GPS can fail, be wrong, or suddenly die. And then you will be scared and lost and a little freaked out (like I was in Houston two years ago). GPS is fine, but keep the paper maps close by anyway.
• Print off a list of local hospitals

And one last thing. Bring a towel. They are incredibly useful for so many things.

What do you do to keep kids safe while traveling?

April Things

Lights out!

So you have the benefit of a freezer full of wonderful pasture raised meat you bought from a local farmer.  The comfortable feeling of knowing your freezer is full of good food for the year and maybe even a few special cuts for the holidays.  Nice feeling eh?

Right up until the power goes out of course. Then it's freak out show and you know it's all going to end it tears.

If you have a generator you are allowed to look smug at this point as long as you remember to not start it up inside your house.  Hook it up to the freezer and see if your neighbour needs to run a couple hundred feet of extension cord to it as well.  Well done - you can go read something interesting instead.

If not, don't Panic. 

You've got a minimum of 24 hours no matter what so you have plenty of time to read this entire blog post and get some snacks, just don't open the freezer ok?

You might be able to borrow or rent a generator.  Depending on how often this happens and how much meat you keep on hand, it might be worth it to buy a generator.

I once went three days without power with a chest freezer full of beef and pork and zero dry ice.  At the three day mark I moved all the food into another freezer at my parents house.  We lost some frozen peppers to bad freezer burn, but all the meat was fine.

Call the power company so they know your address is included in the power outage.

How long before you have to worry?
Chest Freezer: 24 - 48 hours is likely, 72 is possible.
Upright: 24 hours for sure, 48 depending on other factors.  Ours thawed totally by 24 hours which is why we got rid of it. 
Refrigerator: 24 hours but you may still end up throwing stuff out.  It depends - the rules will be different for a lot of stuff.  Produce is remarkably resilient though - if it looks and smells ok it is.

For either freezer type you will want to leave it alone - don't open it.  Especially the upright.  You've got time.  Really - your food isn't lonely or scared.  Let it be.

Get a meat thermometer like the one pictured that reads low temps as well as high ones.  USDA guidelines say to throw out (or cook) foods that have been at higher than 40 degrees for more than two hours (I think that's overkill, but it's a guideline) - as long as it's not to 40 you can safely refreeze anything. You don't want to guess though - you'll waste a lot of food unnecessarily.

At the 24 hour mark get your thermometer and open the freezer.  Know exactly what you are going to do before hand - keep it short.  This is a quick gauge of the situation, not a detailed one.  Hot air rises - check the food on the top first.  It should still be frozen, or at least mostly frozen.  If it's thawed take the temp so you can get a feel for how much time you have, but you already know you're going to need dry ice soon.  If the stuff at the top is frozen solid so is the stuff at the bottom.  If you don't have much bunch the food together.  If it's easy to get at, remove any ice cream boxes that might leak - ice cream is probably doomed at this point, and it'll save you a mess.  Any meat that is leaking you should remove and cook.  If you have an upright with an ice maker get the ice out now - it's going to turn into water and that will make things worse.

So we're at the 24 hour mark.  If you have an upright you probably need dry ice now.  If you have a chest freezer you can probably wait a day maybe two depending on how your inspection went.   The problem here is that everyone else is at the same point you are, so dry ice may be harder to find.   Call the local grocery store for dry ice. If they don't have it start calling the grocery stores in small towns nearby - rural folks use this more often than city folks.  Get some - it's about 1$ per pound.

Dry ice is going to dissipate at a rate of 5 -10 pounds every 24 hours.  In the meantime, it's going to keep your food cold enough to save.

This link has good data on dry ice -http://www.dryiceinfo.com/broken.html

From that link -

For each 24-hour period:

(1) Freezer on bottom: use 15 to 25 pounds.
(2) Freezer on top: use 20 to 30 pounds.
(3) Side by side Freezer: use 30 to 40 pounds. Place each slab, starting with the top shelf, on top of the food to be kept frozen. Bottom shelves will be kept frozen by the Dry Ice above it.
(4) Chest Freezer: use 40 to 50 pounds. When taking out the frozen food, carefully lift the dry ice slab up with gloves, potholder, towel, etc., without touching the dry ice directly.

I think that's overkill, but best to start with that and see how it's going 24 hours later and gauge how much to buy again then.

At the 48 hour mark repeat what you did at the 24 hour mark.  More carefully this time.  Feel around the packages - what is thawing?  If it still has a frozen core that's fine - if it's totally thawed you probably need to start adding dry ice if you haven't already, or step up the amount.

If it's approaching 40 degrees you need to buy charcoal : ).  That's not entirely facetious - once cooked if you can keep it at refrigerator temps you can re-freeze it within 3-4 days (again, that's a USDA guideline).  It's easier to keep food at that temp and it buys you a lot of time, but you'll need a lot of dry ice (or regular ice in coolers) to cool the food down.

Lastly, read this - http://www.fsis.usda.gov/Factsheets/Focus_On_Freezing/

That's the USDA freezer safety guidelines - they are sensible.  There is a section on freezer emergencies.

Worst case, your insurance company (home owners policy) may cover losses of food due to power outage - call them and check if you get to that point.

This isn't helpful now, but in the future unless you have a disability that makes getting into a chest freezer impossible or impractical, buy a chest freezer, not an upright.

We always recommend a chest freezer.  If you have one you now know why.  An upright will lose all the cold air every time it's opened - the chest freezer won't.  A chest freezer is also less likely to break since they don't automatically defrost.  On an upright there are a few components that can go bad on the defrost cycle that will cause the freezer to stop working - not cool (heh...get it?).  A chest freezer door that's left open isn't a big deal at all - shut the upright wrong and you just lost all your food overnight.  To top off the list of benefits, a chest freezer is a lot cheaper.  Yes - it's harder to keep organized - if you have a significant investment that trade off is worth it.

A chest freezer will keep your meat good for 24 hours minimum, but 48 hours is likely and 72 hours is possible - it all depends on the freezer, the temperature of the air around it, and how full the freezer is.  It's best to keep the freezer mostly full - all that frozen stuff acts as it's own cooling mechanism if the power goes out.  This is true for an upright as well, but an upright just won't hold the cold as well - if you don't open it you can go 24 hours, maybe 48, but not in my experience. That's the ultimate reason we got rid of ours.

Good luck!