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.
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*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. :)