We are the music makers and we are the dreamers of dreams . . .
yet we are the movers and shakers of the world forever, it seems

Tuesday, May 29, 2012

Archie's Diagnosis: Phase Two

We met with the allergist today. We basically just confirmed what we already knew: he has a lot of food allergies and they have caused his eosinophils to gather in his esophagus, giving him a chronic disease called EE or EOE. He described eosinophils as a nasty white blood cell that is great for fighting parasites, but gets confused and comes out with allergens instead. It releases nasty chemicals to attack the parasite, but in Archie's case, his esophagus. He also said it is the same blood cell that causes asthma, but with asthma it is attacking the lungs. It is chronic disease (we just learned this today), but Archie is so young, and most of his food allergies should be outgrown, that the allergist excitedly wondered if he may outgrow the EE too. Wouldn't it be great if he didn't have to deal with this for the rest of his life?!?! He loved the mystery of it all.

He also said that with most food allergies, the blood work alone is inconclusive because it is the actual clinical symptoms, not the numbers, that determine true allergy. But, since Archie has EE, even the most minor food allergy could have caused the reaction, so there is no such thing as a non-significant allergen. So, we are supposed to keep him away from his allergens, mainly dairy, egg, gluten, soy and peanuts, and keep him on a topical steroid (an asthma inhalant liquid that we mix with stevia). Most EE patients have to stay on this regime for the duration of the disease, but with Archie, we are going to test his blood in 5 months to see if his blood allergy levels have decreased, and if they have, we will introduce the allergens one at a time while still on the steroids. If he continues to improve, we will take him off the steroids, and do another endoscopy to test for eosinophils in the esophagus again. If the eosinophils are gone, then he is one of the rare cases where it won't be chronic!!!

It seems like a lot to take in, and it is, but we aren't overwhelmed. He is still such a little guy, and he doesn't know what he's missing. Also, he is so young, that I am still making him special food for each meal, despite the EE. So, instead of chicken nuggets and french fries, I give him low-allergen nuggets and veggie chips. He doesn't care. The only difficult thing we've run into is emergency snacking. We have to have a bag on Lucky Charms on hand at all times (yes they are allergen free! Cool huh?), because we can't just grab something wherever we are. He takes his medicine well, he eats CONSTANTLY, he likes his special food, and we are good!
Here is a little information I found on EE if you are interested in learning from a more official source.
PS. I just found out Archie got diagnosed during the UK's national eosiniphillic awareness week! I just thought that was funny.

Thursday, May 24, 2012

Archie's Diagnosis Phase One

Archie had a real-live medical procedure this last week. He went in for an endoscopy and colonoscopy to see what is going on with his little tummy! Let me back up a bit...last week the blood tests came back with increased levels of a particular white blood cell called eosinophil. That would explain the constant stomach sickies and his "failure to thrive" (yes, they finally came out and said it). A few days later we got the allergy results which showed that he was allergic to milk, eggs, wheat, soy and nuts. Dogs too, but not cockroaches...it was a very thorough test. We then got referred to a pediatric gastroenterologist.  The referral went through on Monday morning, we got him in to the office on Monday afternoon, just moments after getting the allergy results, and had him in for his procedure the next day. This wasn't all rushed because it was an emergency, it was just how it all worked out. It's amazing how it all just "works out" sometimes huh? Wink Wink. We have seen Heaven's hands in our lives so much this last week. Heavenly Father sure wants Archie healthy as much as we do I think.

So, here we are, waiting at the hospital with a baby who hasn't eaten and is very tired. He was such a good boy.

Mike and I got labeled and officially marked as Archie's parents.

There was a lot of waiting, and crying and cute hospital gowns, and great nurses. 

The hardest part was watching them put him under. Just seeing him medically sleeping was not fun at all. He woke up great, the preliminary impression was great, now we just had to wait for the biopsy results.

Two days later, the results are back. He has a condition called eosinophilic esophagitis (EE). It is treatable with topical steroids and removing the allergens from his diet or environment. The problem now is finding out what allergens are causing it because he seems to be allergic to so much. Thus another referral to an allergist. That's why this is just "Phase One". We still have a lot to find out from the allergist. Hopefully that will happen sooner rather than later so we can get him healthy again.
(ps, post-op, he was LOVING the jello)

Wednesday, May 23, 2012

Life's not ALL Drama...

We have been having fun times too! Spring in Boise, Idaho is just FABULOUS!! It is 85 and sunny one day, and 45 and freezing the next. On the nice days, Mike finds ways to keep the kids happy and make fun memories with them. Elliott has been begging to go golfing for ages, which we can't understand, because he's never been golfing. But, it is another sport, and he loves EVERY sport, so Mike made it happen.

Even Lucy enjoyed herself.

Elliott has been a great helper too. He is counting down the days until he's old enough to mow the lawn all by himself.....oh how quickly that enthusiasm will diminish when he is forced to do it...hee hee. 

 We were able to go to a BSU spring practice game. We only made it through half the game because it was so cold and windy!

I don't remember the occasion that inspired this fruit pizza, but it looks yummy, no? I think it might have been Archie's family gathering birthday cake...sure, let's say that! 
Two weeks after Mike and I raced to beat Pete, the kids got to do a fun run mile for their school. It was fun for Mike and I to cheer them on like they did for us.

Here they are pre-race. you can't tell, but they are very excited.
 Go Kindergarteners!
 Lucy finishing the race!
 Elliott grabbing his medal
We were so proud of them. We clocked a mile on the drive home, and the kids were so impressed that they ran THAT far! Elliott especially has been a different kid since then. It was like a light turned on and he realized he can do hard things! He has been so independent and taking initiative he would never have taken before. It is so great to see them grow in confidence and be proud of themselves like we are proud of them.

Thursday, May 17, 2012

Archie's Ailment

Our poor little man can't seem to kick this stomach thing! He'll have a few good days, then be back to diarrhea and vomiting for a few days, then back and forth for the last 3 weeks or so. The doctor is a little concerned because he's lost some weight and "he wasn't gaining weight like they liked" to begin with. Here is what we mean:
Look at his cute little chubbiness before he got sick:

And this is after a week of yuckies, down a pound and a half:

and this is him another week later after a poopie diaper that would have knocked the world record holder off the pedestal FOREVER! I think it was a 2 pound diaper, too gross to actually weigh it, but it definitely weighed more that a pound of butter.

Mike noted that his belly is no longer distended, he cleaned it right out. I think that's a good thing.

I know it looks scary, and it was, but he gained a half pound back this last week and that's GREAT news.

They've tested his stool, negative, and today they took some blood to test for food allergies.

Worst experience of my life.  They had to do it twice too because they needed so much and his little veins are so small.

They gave him a little bear to take home for being such a trooper. He wins for the youngest Hynes (in our family) to have a medical procedure. Elliott has a cyst removed on his heel, but he was 2 and there was just a little numbing poke.

All of this is very traumatizing for a mom, so I needed some comfort too: comfort food. I made crumb cake. Calories don't count when your baby's sick.

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Wednesday, May 16, 2012

Archie turns 1!!!!

Little Archie is 1 (ok, by now he's 1 + a month, but blogging has not been happening at the Hynes' house for a while!) At his 1 year check-up, he was 18 pounds 14 ounces (4%), he was 29 inches tall (17%), and his head was 49cm (98%).  That's about right for the Hynes family. Our little man has 8 teeth, he is crawling and pulling himself up, he walks while holding onto someone's hand (only one hand; he likes to steer), and he'll take a few steps if Daddy and I are passing him between each other. 

Here are some birthday celebrations!

Here is is asking for "more". He has quite the sweet tooth.

Just some cute Archie moments for you to enjoy. He pushes his little table and uses it as a walker. He likes to rest his chin on his hand...always ready for a photo op. 
And he likes to eat chalk...blue. And berries. Aren't his faces the best?

Mothers day tea

I know this is out of order, but I have to do something to catch up! I'm so far behind! Elliott's teacher had a Mothers Day tea party. Elliott sang songs, then served me yummy water and blueberry bread. I've never had a more handsome waiter!