The chicks in the mail.

 

patch testing

 

Today we started our first round of skin patch allergy testing.  I'm thankful to report it went better than I expected!  We just had to prove to him that it wouldn't hurt. :)

The night before, I stayed up late cooking/pureeing/smashing 26 different foods and supplements to take in for the tests. 

They put a tiny amount of the food/supplement under those tiny disks.  We return to the doctor's on Wednesday to remove them and do the first read, on Thursday to check it again, and again the next Wednesday for another consultation.  So far he's tolerating the patch testing very well. 

I am very thankful to Wendy, who I met through on online group for families dealing with EGID.  She talked me through the prep work, and helped me feel like this is doable, and the testing and elimination diet will be worth it!  She lives here in the valley, and her little guy, J, has the same condition.  (Please pray for healing for him as well!  He had his second endoscopy at a local children's hospital today.)

Truly Pure & Natural

 

If you've been considering the purchase of some of those awesome Lifefactory glass water bottles I talked about a while back, or some of the other TPN products I reviewed here, this is your chance! 

TPN is offering free shipping the rest of the month on every order over $25. 

If you use the button on the right side of our blog to get to the Truly Pure and Natural website, 15% of your purchase goes toward our adoption fund.  Then enter the code EARTHDAY when you check out to get free shipping. 

Happy Shopping! :)

diving in

We dove in today, cutting out all fifteen of the foods we just found out Keandre is allergic to, as well as the four foods we already knew about.  It's too early to know for sure if this is the difference, but Keandre had a really good day!  He was more relaxed and happy than usual, he listened and obeyed with far fewer tantrums, and he didn't throw up at all.

He's a little surprised by the fact that he can't eat a lot of his favorite foods anymore, like pears and oatmeal, but so far he is taking it in stride.  We were too wiped out last night to go shopping, so when breakfast rolled around, my question was, "Keandre, would you like turkey, avocado, and corn chips for breakfast?"  Oh, my.  You would think I asked him if he wanted ice cream!  He was ecstatic. LOL

This evening we went to Trader Joe's for a 'safe foods' shopping spree.  Keandre hugged his bag of chips tight and shouted at the top of his lungs, "I LOVE you, veggie chips!"  Shoppers 20 feet away turned and laughed. 

in other news....

- our rabbits are almost named.
- we are getting 3 - 4 eggs daily -- blue/grey, tan, and brown.
- the kids and I are slowly working through a list of important life skills that will take years and years to teach. (oh, wait -- isn't that the point of parenting?)
- the chapsticks we make have stylish new labels.
- we're trying something new in our house, and it has to do with little glass marbles.
- we had family in town recently, and we missed them the day they left!
- we're in a hair rut, but I have a new idea to try out.
- March kids' quotes are way overdue.

So....lots of posts in the works.  Someday soon, I hope! :)

15 more

 

My mind is so busy tonight.  Keandre's allergy testing earlier today showed that he has become allergic to fifteen new foods in the last ten months.  (I didn't even know that was possible!)

Here are the foods Keandre is allergic to:
dairy/milk, chicken, salmon, eggs, almonds, walnuts, sesame seeds, oats, buckwheat, lima beans, celery, squash, cabbage, coconut, oranges, pears, cantaloupe, watermelon, cinnamon

We started to tell Keandre about it at dinner tonight.  Lucas and Destany were concerned and sad for Keandre.  Thankfully, that was easily remedied by the approach I took.  I give God the credit for helping me think on my feet!!!

Here is how it went....

Mom: "Sorry, honey....the test said no to chicken."
Destany:  "Oh, no!"
Mom: "But....YES to ground beef and turkey!"
Keandre, glowing: "Yeah!"

Mom: "No to pears and watermelon."
siblings: "Oh...."  (frowning)
Mom: "But....YES to grapes and apples!"
Keandre, smiling: "Hooray!"

I'll admit....this news is a little overwhelming.  I teared up a few times during dinner tonight, thinking of how our sweetie will miss eating some of his favorite foods. I am also a little concerned about making sure he has a balanced diet!  But it was a sweet time, eating out together to celebrate Keandre's bravery.  I only slipped out once, taking Brooklyn in the Ergo to walk around and get some fresh air and think and pray.  Then I was back, ready to jump in again. 

Despite the recent diagnosis and these new food allergies, we have much to be thankful for. Keandre is growing well, and is the perfect weight for his age and size. He is physically able to eat, and just as important, he loves to eat. (Many kids with EGID refuse to eat, due to the pain, and have to be taught how to eat once they are stable.) If we stay on this path, we will avoid a feeding tube with elemental/hypoallergenic formula, and we can continue to feed him healthy, organic foods that will hopefully help his body heal.

Hope is good. We are determined to make the most of this opportunity to learn, grow, and help Keandre thrive. And of course we will continue to pray for healing, too.

And from now on.....we are going to have fun with this! We plan to celebrate his list of foods, and help him eat a wide variety of foods.  I will be making a word document listing all the foods he CAN eat, plus pictures, so he can help me plan meals that are safe for him. We're also planning to make him a couple goofy t-shirts. (More on that later!)

So.....are you wondering how you can help us? 
(I know....I'm reading your thoughts! :)

In order to fully eliminate these 19 foods, I need to make an extensive list of the foods Keandre CAN eat. 

You can help by filling up the comments with all your ideas on simple, healthy foods that are NOT on the list above.  Fruits, veggies, meat, grains, etc.  It's all fair game!  I'd love your ideas and encouragement.   Keandre will love it, too. :)

ps - Just in case you are wondering....I was so tired last night I miscounted.  15 new foods, so I had to change the title!

a new allergist

Today was an eventful day.  We met with a new allergist who is somewhat familiar with Eosinophilic Gastrointestinal Disorders (EGID).  EGID is pretty rare, and as a newly identified disease (1970s), we are learning that it is not easy to find medical professionals who are familiar with the unique issues inherent in this condition, or the treatment options.  It is estimated that approximately 4 in 10,000 children, and and 1 in 10,000 adults suffer from EGID.  Treatment is complicated and often only somewhat successful, so many families choose to travel to a specialized hospital in Denver, Chicago, or Cinncinati for treatment.

I was nervous about this appointment.  There was a lot to cover, and so much we are still trying to understand.  I didn't want to miss something important.  But the doctor and his staff were wonderful.  They explained everything well, and gave Andy and I plenty of time to ask questions.  And despite my fatigue, a case of bronchitis, and a mind overwhelmed with all the research I've been doing, God blessed me with the ability to think clearly and ask a lot of important questions.  We were there for three hours! 

The skin prick test (SPT) identified fifteen new foods that Keandre is allergic to, up from the four foods that he was allergic to when we did the SPT in June of 2010.  Oh, my.  Still trying to wrap my mind around that!  And unfortunately, the SPT is only 30% effective -- meaning it may catch only 30% of Keandre's allergies, and definitely only the ones he is hypersensitive to and reacts to immediately.  Next week, we will start patch testing, which checks for delayed reactions.  We are likely to identify even more foods that way.

Despite this bad news, we are hopeful.  God is in this with us.  He is answering our prayers!  We prayed for answers, and a next step in this journey, and He we are well on our way.

My next post will be list of the foods Keandre can no longer eat.  And a chance for you, our family and friends, to help me come up with a list of foods he CAN eat. :)

BOHO - pics from farmer's market

 

Three weeks ago we committed at the last minute to participate in our first farmers' market at the Boho Farm + Home.  It was a success!  I sold several tubs of body butter, and a number of chapsticks.  Even better, I met some lovely and talented people from our community.

The just-harvested organic produce, homemade jam and muffins, and peppermint lemonade were absolutely delicious.  I slipped away from our booth as often as possible to check out the crafts, jewelry, beautiful headbands (picture coming soon), and more.  I left with more ideas than I have time to try out! 

Caroline did an amazing job organizing this event, and I hope that once she recovers from the craziness she plans another one. :)  You can check out Caroline's blog post about it all here.  Jill, from Sweet Life Garden and Neighborhood Garden Party, also posted pictures here.

One unexpected twist....it was a hot day!  The temperature hit the low 90s, and that is not helpful when selling body butter.  The ones in the ice chest were fine.  But my samples slowly changed from the texture of fresh whipped cream to melted ice cream.  Ha!  Next time I will have them sitting on ice packs.  (Ironically, it was rainy and in the mid-50s today!)

Life with EE, EG, and Food Allergies

 

Hanging out in the back yard with Lucas.  We just put 3 new goldfish in our little pond.

Keandre's diagnosis has pretty much stopped us in our tracks.  It's not that his health issues are worse today than they were last week or even 3 months ago.  Rather, it's the fact that an official diagnosis us forced us to realize that this issue is not going to go away easily, and we need to focus as much energy as possible on helping him heal. 

Our day-to-day schedule includes serving up medications, supplements, and vitamins many times a day.  Nine times a day, to be exact.  (Wow -- no wonder it feels like a lot!)  The good news is that it is helping.  His eczema is improving dramatically, and he has been off of daily allergy medications for a month for the first time since he was less than a year old.  That is no small miracle!

We have to be very careful about what Keandre eats.  We avoid his life-threatening food allergies -- dairy, eggs, nuts -- as well as coconut and other foods he has reacted to -- like fresh blueberries.  It takes planning to make sure he has a balanced diet.  We focus on lots of whole, fresh foods and home-cooked meals.  We are learning a lot about healthy fats, traditional cooking, the importance of buying organic food, etc.  This has been good for the whole family!  I am so very thankful that Keandre likes vegetables, since they are a staple in his diet.  ("Steamed butternut squash or sweet potatoes, anyone?")

We track his symptoms very carefully.  How does he feel when he first wakes up?  Did his medication seem to help at all today?  How much pain is he experiencing, and how often has he thrown up?  It is time consuming to track all of this, but we are hoping to see a pattern that will help.

With all of the prayer and effort we are investing into Keandre's health, we feel it's realistic to be hopeful. 

We hope for healing.  And we hope that someday we won't hear phrases like this on such a regular basis:

"Mom!  Keandre is throwing up in the backyard!"

"Keandre, stop running around or you'll throw up."

"Daddy, my tummy is hurting.  And my throat."

"Mom, is it okay for me to try eating again?"

"I'm sick today.  I have a tummy bug."  (Said almost daily, first thing in the morning.)

It is heart-wrenching to watch our little guy suffer this way.  And it is exhausting to wrap our minds around the reality of this condition in combination with his food allergies. 

But we trust God with all of this. 

We are still hopeful.

And so very thankful for our doctors -- traditional and naturopathic* -- who are helping our sweetie. 

Thank you for your continued prayers and support.  It makes a difference.
------------------
*Did you know that in Arizona, naturopathic doctors have four years of medical school as well as their other naturopathic training?  I didn't!  What a blessing, considering there are states where alternative approaches are not regulated and an online degree can suffice!

Noodle's first egg

 

"Mom!  Noodle laid an egg!"

(Tap, tap, listen.) 

"Is there a baby chicky inside?"

test results

No fun and creative blog post here.  Just sadness for our Keandre.

We received the results from his endoscopy and biopsies last Monday.  He has been diagnosed with moderate Eosinophilic Esophagitus (EE), severe Eosinophilic Gastritis (EG), and mild Eosinophilic Gastsroenteritis (EGI).  This is not good news, especially since we are very careful about his food allergies and that is not likely to be the cause of so much inflammation and damage.  (When allergies are the cause, it is much more hopeful.)

There are no easy answers here.  This condition is difficult to treat.  Without a miracle, Keandre's struggle with daily stomach pain, reflux, and vomiting will not be over any time soon.

We are grieving for our son.  We are also trusting that God will carry us through this struggle and sustain us when we're worn out, like we are right now.  We appreciate your prayers.

Mohog

 

Andy gave Keandre a much-needed haircut on Saturday night.  Keandre requested something special.  A mohawk.  It's a little crooked, but really, does a mohawk need to be perfect?

Early yesterday morning, when Keandre came into our room:

Kiara:  "Keandre!  Did you look at your hair this morning?!"
Keandre:  "Yes, I have a mohog!"
Kiara:  "What do you think of it?"
Keandre:  "I'm going to take it to church with me!"

LOVE this kiddo.  He's got the right idea!  Our church has a wonderful mix of families who dress up for church, and those who are respectful in their dress, but quite relaxed about it. 

Hair is just hair.  We'll keep it for a few days, then shave it off and start fresh.  But I have a feeling he'll be asking for one every time we cut his hair from now on!

Later, out in the wind, "What if my mohawk blows away?!?"  (Yes, he did eventually figure out it's a mo-HAWK and not mo-hog.  Bummer. ;) 

ps- All these poor quality pictures are because our camera disappeared a couple weeks ago.  I miss it SO much!

eggs!

 

What an exciting week!  Zinnia and Sweet, both of Destany's chickens, are laying eggs.  One lays in the morning, and one in the afternoon.  We probably check for eggs at least ten times a day.  I wonder when the novelty will wear off? 

Their nesting box is a large mailbox.

Yes, they do use it. :)

Looks at the beautiful shades of brown!  This is our first dozen, in order from left to right, top then bottom.  Today's egg was huge compared to the first eleven!

good times

 

Itty bitty Destany, back when I was first learning to care for her beautiful curls. :)

I wish I could remember how I ran across the Adoption Hair & Skincare Yahoo group.  Especially since it has brought some pretty amazing people our way!  I joined when Destany was a few months old, and most of what I've learned about natural haircare, I learned from those amazing ladies. 

Shortly after joining this group of 2,000+ adoptive families, I met Cate, then Brit and Elise.  Brit and Cate and their families are special parts of our lives.  And Elise and her girls are now family.  (Are we blessed, or what?!)

A few weeks ago, Brooklyn and I flew out and brought Claire & Kyndra here to visit.  Then Elise came and joined us for the last couple of days.

Brooklyn's first flight!

Claire & Andy went on a Niece/Uncle date to Mojo's.

Cuddly pajama girls.

There were many tea parties!

When Elise came, she prepped a bazillion veggies for me to cook.  We'd just received our CSA produce, and I was a bit overwhelmed!

The obligatory 'nice' picture.

How they really look.

The picture *they* prefer to take.

The Mamas....just because. :)

Auntie & Uncle. The girls love saying it, and we love hearing it. And don't try to tell the kids they aren't 'real' cousins. They won't believe you. :)