Moving: embracing change and the unknown

Come September, we will be moving back into our little wee house in Forest Grove.
We will be putting our Yamhill house up for rent, and starting a life full of unknowns within the security of the four walls that surrounds us at 1113 Gales Creek Road.

Four years ago, Jake re-built his grandpa's little two bedroom bungalow- we lived in and loved that house until positive pregnancy test with Crew came around and finding a bigger home with a warm, loving community, became our focus.

We found both in sweet, beautiful Yamhill Oregon.
An incredible blessing we found.
A preschool that developed our Lou's self worth, a teacher who adored her, guided her, and believed in her.
Friends and parents of friends who understood the differences, and accepted them.
Evenings with wine and laughter, with new friends whom I connected with, and trusted.
Wood shop and beer drinking for Jake with his best bud.
Our besties- so loyal and so loving.

Kindness.
Community.
Home.

Heartbreaking, this decision is- but necessary.

Keeping a solid foundation, near both sets of grandparents, near the doctors and hospitals, is critical for us staying hopeful and grounded.

Keeping a balance between work, health, therapies, survival, learning, creating, adventures, love, laughter and stability- it is going to be super hard. Especially since we don't know where or what we're headed towards.

Keeping perspective about what is important in life. What we want our children to learn from and about adversity. What we want them to remember about their childhood and remember about us, as parents.

We firmly believe that a childhood that has stability, love that has no bounds, creative adventure seeking, parents who honor and enrich each child as an individual, and food that nourishes and heals, will be far more beneficial than a big house full of stuff and parents stretched to thin to remember what really matters.

So.
For a lady who has historically, needed to plan every minute into her future- this is going to be the ultimate trust exercise.

I'm trusting that we're making the right choices.
I'm trusting that we're given what we can handle- even when you might not feel it at the time.
I'm trusting in my partner.
I'm trusting in God.
I'm trusting myself.

Wish us luck-

All American Meal

Earlier this week, the kids got to eat curly fries from the Yamhill County Fair. They chopped the potatoes right there, cooked them in oil, and put into our hands. 

It was really fun to find an American classic food that the babes could eat AT the fair!

So in that same spirit, tonight, our menu consists of All American pieces.

This is also my kid's first hot dog experience- wish them well!

We went big here- pre packaged Applegate (organic, no nitrates, no preservatives) hot dogs and Amy's GF baked beans!

The fancy comes from the pre packaged-ness...I'm a little excited to just open something and heat it up!

And for dessert?

Homemade GFCF peach cobbler (oh my, one of the best desserts I've ever made!)

6 big peaches skinned and sliced 

1/4 cup agave syrup

1 tbsp lemon juice 

A bit of cinnamon 

Cook over medium heat for a little while.

Topping

Gf ap flour mix 2 cups ish

Bit of vanilla

Bit of baking powder

Bit of salt

1/4 cup cold coconut oil

Rice milk to moisten

Stir with hands and crumble on top peaches

Bake 375  30 ish minutes

Throwing some corn on the cob on the BBQ and we've got ourselves a perfect 'Merica Meal!

Garden and Pickin'

The two reasons I dig the summer months are:

Gardening and Picking.

I'm really not into heat (I'm a sweaty hot mess year round- 80 degrees and higher just makes things ridiculous).

But heat brings crops to garden and to harvest!

Since Quinny's first year of life, and every year since, we spend much of our summer days (now mornings- avoiding sun from 10a- 4p for Roo Roo) picking our fruits and veggies and canning, freezing, preserving.

Today was peach picking with Papa and peach preserving with Grammy.

We also went to Jake's parents farm and tended to our big garden. My mom in law is so damn good with this stuff- loving learning from her!

The crop is coming in and the kids (and the Mama) are having a rad rad time.

We may be avoiding the sun but we appreciate all the sun is gifting to us!

Benign Familial Hypocalciuric Hypercalcemia

Benign Familial Hypocalciuric Hypercalemia.

We found out what has been cooking with our sweet Carter.
Still working on the details- but the gist is that she was born without calcium receptors. A mutation on her 3rd chromosome.

They are telling us to take (almost all) vitamin D out of her life (sun and food sourced).

We've started the second and third opinion process, but a few things we know for sure:

We have to make some major changes.

We have to make some financial changes and some lifestyle changes.

We've got to re-prioritize our priorities and make sure ALL of our babes are honored and fulfilled with the extra barriers in the way.

We have GOT to make some bitchin' lemonade from these SUPER sour, damn lemons.

And we have to stay positive and know that our sweet sweet girl will be A-ok, with the help of doctors and with some good old gumption from her crazy clan.

Lavender Lovin'

Recently, an amazing artist from New York, offered to do two pieces of paper art for me for FREE!
A. this chick is beyond amazing- human being and artist.
B. I could and would never accept such crazy-ness!

So we came up with our own terms- and although a bit reluctant, I went along with our deal and received the most amazing, thoughtful, totally bitchin' pieces to gift to two of my most dearest friends, and their partners (in celebration for their weddings).

I have one more to give, so I can't show pictures yet (post to come) but as an extra thank you to this wonderful women, I took my three wee's (and my Mama) to a lavender farm, so we could make her an extra thank you gift.

With some freshly preserved organic berry jam, little jar of local raw honey, a book we found for her daughter and a homemade local lavender wreath- I am hoping to show her some of the same kindness and graciousness she bestowed upon us.

Daddy's Day Shenanigans

On Mondays and Tuesdays When I'm away working, Jake stays home with the babes- and although he gives me some insight into their days, until tonight (when I looked at his pictorial evidence) I never really appreciated the shenanigans that takes place.
God bless a loving Daddy.
God bless a ridiculously rad partner!

Health of 'The Bigs'

The past few months have been a crazy crash course on the health of our Bigs (Lou and Roo).


As we are poking our heads out from the storm, I am feeling more confident, more educated and a whole bit more stoked about our wellness future.

We are about to embark down another path for Miss Middle, but with our new gained confidence and knowledge: BRING IT ON!

Let's start with Lou.

Holy God.
This story is just plain rad.

I'm going to cut out a bit of details, as the mini drama could host its own blog post, but the jist is that the seizures she was having, was just the tip of the ice berg.
We came to find out she had a congenital heart defect (she'll grow out of), her layers of neurological damage was more significant that we originally thought AND she is allergic to eggs!

As the pros started to tally up all of the diagnoses and it was just...too much.
Autism
SPD
FAE
ADHD
CHD
epilepsy
blah blah blah.

When the talks of more medications to bandaid these issues came about, we decided to invest (heavily) in our pediatric naturopathic doctor we started with a few months prior.

We needed to have someone SEE QUINNY first and see the labels as symptoms- not as her core.

And OH MY GOD!
Dr. Sarah McCallister (www.nd4kids.com)
Our HERO

I'll provide more details about our holistic approach to her healing on another post, but with the addition of certain supplements (suntheanine, serophos, vitamin D, + digestive enzymes, tranquility (gaba glutamate), and the extraction of eggs (while continuing to be gluten/casein free, preservative/dye free, mainly organic and limited refined sugars) the cloud of labels is slowly, but surely, finding a new mountain to pour over.
We are getting more Quinny and less behaviors, each and every day.

After day three of taking her supplements, I have only seen one seizure!
In the past ten days, Quinny has learned to RIDE A BIKE, ZIP A FREAKING ZIPPER, and BUCKLE HER SAFETY BELT!
You guys!
Seriously?!?!?

For the past two years, these are things that she has wanted to do, but the anxiety and damaged neurological highway stemming from right to left brain has made it almost impossible for her to do such.

And then BAM!

It has only been 10 days since we have really gotten into the healing groove- I'm sure we'll have some total crap days down the road...but that is typical, right? A couple crap days sprinkled into a grouping of typical emotional and physical developmental sound days- what more could a Mama hope for?

We're healing some bods over here on Olive St.

And our sweet, hilarious, cheeky, oh-so-snuggly Carter Roo:

(could you just eat her??)

When she was 6 months old, she was diagnosed with asthma and eczema. She was on four steroid nebulizer breathing treatments a day, and a whole lotta steroid creams for her mangled skin.
Then around one years old, her food allergies began (wheat, dairy, soy, eggs, and peanuts).
She's had chronic diarrhea for over a year now (which has stalled her potty using abilities).
She's been a fussy hot mess for about a year and a half.
Iron levels fluctuating from extreme low to low low.
Her ability to regulate body temperature has been steadily declining over the past 6 months.
And they recently found a higher level than normal, calcium level in her blood.

Oye.
A. no wonder she is a cranky hot mess most days- our sweet girl doesn't feel well!
B. What the hell is going on?

It was finally the blood calcium levels that got the doctor's attention.
Our bodies work really hard to regulate these calcium levels as too little can be dangerous and too high of numbers can be dangerous.

There are a few channels they are traveling down to figure out what has stopped working effectively in her body to de-regualte the calcium levels- most of the reasons are a bit scary and a lot overwhelming. BUT we feel like this is the beginning of figuring this little lass' slow decline out.

Her allergist is waiting for the pediatric endocrinologist to conduct all of his tests before he makes a firm diagnosis on her over heating issue- but he is thinking she could be allergic to the Sun's UV Rays.
Yes. You heard that right.
Carter (might be...but probably is) allergic to the damn SUN.

The past month, her face, eyes and neck would turn BRIGHT red, feel hot hot hot, and swell (and sometimes get hives) when she would be out in the sun for more than 10 minutes (between the hours of 10a and 4pm). Once I got her inside, gave her some benedryl and a cold bath, her flaming hot head would cool down and calm down.

Dr. Brown (her amazing allergist) says this is a rare disorder, but the symptoms all fit the bill.
He said the UV rays trigger the histamines to react the same way her other allergies trigger a histamine reaction.

We (Dr. Brown and I) decided that until we figure out the other stuff, we are going to hold off on going down the Sun Allergy road.
For now, she has to take Zyrtec every morning, wear sunscreen all the time, wear a hat in the sun and limit the time spent in the sun from 10a-4p every damn day.

I'm going to keep my brain in that space until later.
Keep her safe from anaphylactic shock (from the DAMN SUN) until we know more and about more stuff.
OH, and Carter is going to see our pediatric naturopathic doctor soon.

It is also worth noting what a few of Carter's doctors reminded us: that Carter and Crew are some kind of a miracle. My 11th chromosome mutation is so significant that these babies should have not made it past 8 weeks of life. And that because Carter carries more of my genetic info. than Crew, she has the potential to be more susceptible to the same and more mutations than I.
Ironically, some of the more lame reasons for an increased blood calcium level, have been tied to conditions set forth from mutations on the 11th chromosome.

Silver lining you ask?
We are SO fortunate to have bitchin' health insurance from my husband's amazing job!
We have some of the radest docs around, helping us to complete these babe's health puzzle.
And Lastly and MOST important...we HAVE these kiddos.
These beautiful, wonderful, loving, curious, empathetic, kind, generous kiddos.