Taekwon-Do

Lucas, Nichole, and Keandre recently completed a 6-week Taekwon-Do trial after a friend invited us to give it a try.  We had a wonderful experience!  The focus on Courtesy, Integrity, Perseverance, Self-Control, and Indomitable Spirit blended wonderfully with the spiritual and life skills we work to teach our children on a daily basis. 

Here, Keandre is studying for his test.

Over the course of the classes, their confidence grew and grew!

Keandre runs over for a quick snuggle after his group's testing.

We hope to be able to sign up for additional classes sometime soon.  The middle three kiddos loved their experience there, and the littlest girls enjoyed watching.  In the future, Jasmin even hopes to participate!  Now, to save up, or apply for a scholarship. :)

(Did I mention they started saying 'Yes sir' and 'Yes ma'am' in response to our instructions to help set the table, get homework done, etc.?  Ahhhhh..... I could get used to that. ;)

Thanksgiving at School

The night before the Thanksgiving feast at school, Keandre cried himself to sleep. I may have shed a few tears, too. It's heart-wrenching to watch your friends prepare all week for a special meal, and know you can't participate. Holidays that focus almost exclusively on food are especially hard for those with multiple severe food allergies, or Eosinophilic Gastrointestinal Disease (EGID), or both. 

Surprising Keandre at the school Thanksgiving feast.

When I shared how broken I felt over my little boy's pain, my lovely sister-in-law, Sarah, suggested a creative new way to prepare his safe foods.  That was just the sort of idea this tired Mama needed! (My creativity is a bit shot at the moment....stress will do that to ya! ;)

Andy stepped up to do the creating, and the end result was a fun surprise for Keandre.  He loved it!  I think he really appreciated the effort Daddy put into making his lunch special.

Can you guess what it is? ;)

treasure

Keandre, as he fell asleep in my arms while
fighting a high fever this week:

"Mommy, I love being your treasure."

Be still my heart.

Do you know you are the Lord's treasure?  Oh, how I hope that changes our lives the way our deep and sacrificial (human) love for our children changes their lives.

Under the Weather

Sometimes, even with a healthy lifestyle and good nutrition, you get hit with illness.  It seems like half the people we know have the flu right now!  We've been under the weather this week, too.  It can take a while to get through a household of 8 people.  Fevers, nausea, achy body, coughing fits, we've seen it all.  We're not too bad off, for the most part, just a lot of resting, napping together, and extra TV time.  Andy and I were hit first, so at least we can take care of the others now.

We learned that while under the weather, you might decide to try out a baby bottle for the first time ever - and like it!  Daddy enjoyed the snuggle time.  (Can you believe how long her hair is getting?)

And you might start sleeping in unusual places.

Your big sister, too.

Then one brother....

and another.

There are downed children and comfort items everywhere we look.  Poor sweeties.  It hit little Isaac today, so Anna-Lise is the only one to escape the bug so far.  (We're rooting for you, Anna! :)

Keandre has been sleeping around the clock for 2 days now, but as of tonight, his fever is finally dropping.

These two snuggled up and watched Curious George 2 next to me while I napped.  This is the life, right?  (Ha...Lucas would disagree!)

We haven't had the flu in 3+ years.  At least we got it over with early this season, right?

What do you do to build your family's immunity during the winter sick season? 
(blog post on that soon)

First Day of School, 2012

Remember the old days, when school started after Labor Day instead of the end of July?  We're still on that schedule.  Since this blog is part family scrapbook, I've included the obligatory 'first day' photo.  Lucas is in 4th grade, Nichole is in 2nd, and Keandre is officially a Kindergartener.  No backpacks or school supplies to purchase for their Montessori school -- they keep it nice and simple. :)

Nichole celebrated her 8th birthday on the first day of school.  The class sang her a special song while she held a globe and walked around the 'sun' (a candle) eight times. 

The kids are excited to be back in school with their friends.  Andy and I are glad they're back in school, too. ;)  Really, though....we are blessed to know our children are together and have caring and motivated teachers. 

It's great to be five!

    

Keandre is a big fan of Bill Cosby's 'Little Bill'. If you are familiar with the show, you'll recognize the saying, "It's great to be five!"  March 10th was Keandre's big day, and he shouted it with pride. :) 

His breakfast of choice was a plateful of hash browns.  Can you see his excitement?

Keandre asked for an easy-going party at a local park.  He requested that everyone wear his favorite color, green, and that we serve only foods that are safe for him to eat.  I gave all the parents a heads-up that this party would be a little unusual....

It worked out great!  The kids all had great attitudes about the food.  We called it an 'eat like me' party, and served fresh-sliced apples, rice cakes, roasted garbanzo beans, and green beans. 

There were meaningful conversations amongst the parents and kids about how these are foods that are safe for Keandre, and that he can't eat most of the foods that they eat.  Empathy grew. :)

 Face painting was the highlight of the party.  My creative sisters-in-law came up with some great ideas, and the kids were all impressed.

Artan and Lucas contributed to the animal theme that caught on well with the boys.  (Most of the girls were princesses.)

Dessert was rice crispies made with homemade marshmellows. Keandre ate at least five of them, and wants me to make them again soon.

We all went home tired and happy.  Our little tiger declared the day a huge success! :)

Funny Friday

Just a few of the funnies around here lately....

(March '12)

Lucas got tired of holding the phone.

(April '12)

Brooklyn and cousin Madeline dressed the tortoise in baby girl pants.

Keandre and Nichole got married.  And had a child.  All in the same hour.

They were the typical, doting parents, quite proud of their cape-wearing tyke.

Uncle Ian's tortoise was part of our Easter egg hunt.  He stayed in this position for a good 15 minutes.  So cooperative! :)

A couple tigers and a cheetah planned a playdate...

...and together, they learned the joys of photography in motion.

(May 2012)

Brooklyn's hair took on a life of its own.

And she turned two! :)

 Keandre tried out a new sleeping position. He successfully slept on top of legos, a heat lamp, and his guitar. (Yes, their bedroom floor is usually that messy. I gave up -- and that is why they have a baby gate in their doorway! :)

So....what's funny in your life these days?

Oatmeal, glorious oatmeal

In May, we introduced organic, gluten-free oatmeal for Keandre's latest food trial.  That day, Keandre skipped around the house yelling at the top of his lungs, "Hooray!  Oat-a-meal!  I love oat-a-meal!"  Followed by, "It's yummy, right?  I think had it once a loooong time ago." :)

Because Eosinophilic Esophagitus and Eosinophilic Gastroenteritis (EE & EGE) are allergic conditions, every food has to be trialed separately until you know whether it's a 'safe food', meaning it doesn't trigger the growth of eosinophils, or white blood cells, in the digestive track.  The only way to know for sure if there are eosinophils is to schedule an endosocopy with biopsies, but you can also tell if the food is a problem from other symptoms. 

Within 1.5 weeks after we added 'oat-a-meal', Keandre was flaring.  Hiccups, stomach pain, reflux, and then vomiting returned.  Some families keep it up longer, and scope to be sure it's really 'a fail' (checking for evidence of eosinophils), but I just can't do that...it's too hard on him.  It's sign enough if I remove the food from his diet and he recovers. 

Oatmeal was a huge loss -- an emotional one for both of us.  My Mama heart breaks to see my son suffer, and I struggle with what to feed him with this limited diet.  He is grieving the loss of a food that he loved, and this loss is forcing him to face how different his life is from other 5-year-olds.

Please continue those prayers.  Keandre's body has rejected 7 of the last 8 foods we've trialed in the last 6 months, so I'm a little scared to introduce anything new for a while. 

For now, we're trying some new allergy treatments, in hopes that it will help his body tolerate more foods.  More on that later....

Foods that caused him to flare so far this year: lentils, cilantro, chives, green onion, leeks, celery, and now oatmeal.  (For the EOS moms who read here. :)

Please, please pray that pear continues to be safe for him.  He loves them!

The Results

I've been on pins and needles all week, waiting for Keandre's doctor to call with results from the biopsies.  To be honest, I didn't expect good news.  Keandre flares so easily.  The last five foods we tried to add to his diet were a fail.  And he's been affected by the wind and high pollen count in the last two weeks, too.  (For some people, EE and EGE have an environmental component.)

So it felt like a little miracle -- God's gift and encouragement to us and our son during a difficult season -- when Dr. S. called this afternoon and said Keandre SCOPED CLEAR!  Amazing.  Something to cry happy tears about! :)

For the EoE moms who read here, last July Keandre had 4 eos in his esophagus, and 37 in his stomach.  (At diagnosis in March '11, it was much worse than that!)  Now they found one eosinophil in his esophagus, and NONE in his stomach. 

Eosinophilic Esophagitis (EE) is an uncommon and difficult condition to treat.  Eosinophilic Gastroenteritis (EGE) is far more rare, and harder to treat.  Our little guy has both conditions.  Both are, physically at least, controlled right now!  He is not consuming elemental formula or steroid slurries to coat his esophagus.

Although this news made my day, Keandre's response was less than I hoped for.  And yet he was right on.  A first, he smiled, pleased with the news that his tummy looked good.  And then, for the next hour, he was grouchy and needy.  Finally, I figured it out. 

It's great to hear that you're doing better.  But when you still experience daily pain, it's a small comfort.  And when you sometimes struggle to swallow the few foods you're allowed to eat, it's a scary feeling.

Thank you, THANK YOU, for your prayers and support over the last few years.  You have blessed us greatly! 

Please continue to pray for wisdom for Andy and I and Keandre's doctors as we continue down this path.  Please pray for pain relief for Keandre, and healing for his heart as he daily faces the reality that he cannot live like other kids his age.

We know the Lord loves our little guy deeply, and has all his days planned out before him.  He has sustained us through many struggles, and we are hopeful for the future.

'My Hospital'

 

a goofy grin on our way to check-in

Keandre has a very positive view of our local children's hospital.  In fact, every time we pass it, he yells out, "Mom, there's my hospital!" :)  I have no doubt this contributes to his mostly easy-going approach to the testing we must do regularly to track how he's doing. This morning was his big day -- his fourth endoscopy (third in less than a year). 

My Aunt arrived at 6:30am to take over kid care so I could focus on getting Keandre and I out the door.  Keandre started his morning with a bear hug for me and a sweet snuggle for Aunt Maggie, so I could tell we were off to a good start.  Despite having no food or drink since bedtime the night before, he was all smiles, and so silly it was hard to get him ready! 

Keandre named his little goose Duck Duck Goose, or 'Ducky', for short. :)

His check-in nurse enjoyed his goofy demeaner, and gave him a little stuffed animal to play with.  After dressing in his 'pjs', we were off to play in a nearby playroom.  It was a mecca to plastic 'noisy toys'....a little overwhelming!  Daddy arrived to hang out with us, which helped pass the time.

Before they called us back, we met with the anesthesiologist and his GI doctor.  Keandre gave his doctor a huge smile and enthusiastic hug, which was super sweet to see.  Dr. S. has cared for him since he was an infant struggling to thrive, and although he's not considered a top doc in regards to treating Eosinophilic Esophatigitis and Eosinophilic Gastroenteritis, he has been a huge blessing to our family and we've been happy with his care.

Shortly before we got started, I had my first Mommy regret.  I told the anesthesiologist about the extreme agitation and confusion Keandre experiences after waking up from his previous endoscopies.  He suggested a dose of Versed, which would hopefully help.  When they brought out the bright pink, icky smelling fluid, I *almost* said, "Nevermind, we'll pass."  (We avoid food dye and unneccesary meds as a general rule.)  I still wish I had spoken up.  There was a delay as we waited for Keandre's turn, and for the next 30 minutes we held our sweetie as he zoned out and was barely functional.  I prayed over him a ton, asking the Lord to alleviate any negative side effects and help me be more assertive in the future.

Another sad effect of the Versed was missing out on the much-awaited Hummer ride.  I could have cried!  We took a picture of him with the Hummer before we entered the OR, but he doesn't remember that at all.  He was so out of it that Andy had to hold him upright, but he sure looks cute!

Afterward, Keandre experienced the same agitation and confusion as the last few times.  He was flailing, yelling at everyone, and it was very hard to remove his IV.  Confirmation that the Versed was not worth it! :(  He was also terribly distraught when he woke up enough to realize he hadn't been able to drive the Hummer.

When he calmed down just a little, the nurses were kind enough to bring the Hummer to the recovery room and let him drive it even though he was angry and couldn't even walk straight.  They were so kind to us!  The other families and staff were also very understanding as we left the hospital with our screaming kiddo.  I was afraid we'd have to prove we weren't kidnapping him, but instead they gave us looks of sympathy as they saw he was obviously going through a lot.  About 30 minutes later, he was much calmer.  So much for the Versed!  Not making that mistake again....

(source)

When we got home, it was just the two of us.  We snuggled, watched a new Little Bill movie I had bought on ebay, and his appetite returned *really* fast.  In the first three hours, he ate a couple servings each of homemade apple jello, grassfed beef, organic green beans, and rice cooked in homemade bone broth.  Amazing.  So much for the liquid diet they recommend for the first few hours. :) I'm so thankful he is such a great eater, and that it didn't make him sick!

Some mixed feelings came out in a little rebellion about an hour after we settled in.  I was on the phone for a few minutes, and he got to work cutting the ribbon and tags off Ducky, and ridding himself of those hospital bands.  I don't blame him.  I'd have some mixed feelings about it, too!  After that, he seemed to feel better again.

Did I mention that Keandre's doctor was happy with how the endoscopy went, and that, visually, everything looked good?  We are so thankful!  The labs will tell the true story, though, and we hope to hear results by Friday.  Thank you for your prayers.

I LOVE this kiddo.  I am so blessed to be his Mama!

Time to ride that Hummer again

 

Keandre riding a Hummer at the children's hospital, on the way to the OR in July '11.

We heard from Keandre's gastroenterologist (GI) on Friday, and they have his next endoscopy scheduled for Monday morning.  How's that for notice? LOL  Before that, we knew they were hoping to schedule him for "sometime next week". 

Andy's office is closed on Friday, so he could not ask for Monday morning off.  I was just a little panicked yesterday afternoon, trying to figure out sitters, rides to school, etc. for the other three kids.  It's not easy to find a sitter who's up and at 'em and ready for extra kiddos at 6:40am!  Not surprisingly, God provided.  My Aunt has Monday off, and she will fill in the gaps, caring for Brooklyn and taking Lucas and Nichole to school.  What a relief. :)

And then a co-worker, who is also our neighbor, surprised us by contacting Andy's boss and arranging for him to have a couple hours off to join us at the hospital.  Keandre and I will be so glad to have him there with us!  He handles the 'before' really well, but the 'after'... not so much.  Waking up from the anesthesia is very hard for him.  A little extra support will be nice.

This endoscopy feels like a big deal.  I admit it -- I'm nervous about what we'll find.

Keandre's most recent scopes were March 2011 (diagnosis) and July 2011.  He is definitely due for another one -- it is the ONLY way to know if his treatment plan has been effective enough.

At his March '11 scope, he was in bad shape.  He was vomiting regularly, and had terrible reflux and chronic stomach pain.  He didn't know what it was like to NOT be in pain.  At his July '11 scope, we found his EE had cleared, and the EGE had improved some. Unfortunately, EGE is rarer and much harder to treat than EE.  We removed more foods and he had less pain and symptoms.  But it was not enough.  He is still dependant on 15 mg of Prevacid daily.

Since Keandre's diagnosis almost one year ago, he has gone from eating all but 5 or 6 foods (due to food allergies), to having only 10 safe foods total.  The good news is that he appears to be handling these foods well, and he has been able to stay off the elemental formula and feeding tube that becomes the only effective treatment plan for many children with this condition.  I hope the endoscopy shows that we're on the right path. 

This condition is so complicated and overwhelming to treat.  Sometimes I have to look hard to find the positives in the journey.  But the reality is that he was so ill for so long, and there are definite improvements in his health during the last year.  I am so happy to say that, between the diet changes and a few supplements he is on, like daily Vitamin D3 and very high-quality probiotics, his body is healing.

Keandre's environmental allergies have been terrible his whole life.  Only a combination of Benadryl and Zyrtec would control them enough for him to be functional and able to play outside like other children.  Even then, he lived with a runny nose day in and day out, and his eczema was terrible.  As we changed his diet and added important supplements to his daily routines, his environmental allergies began to heal.  First we removed the Benadryl and Zyrtec and replaced it with D-Hist, a natural allergy supplement that he would take twice daily to control symptoms.  (We started with children's chewables, then switched to the adult capsules.)  We could always tell when the supplement was wearing off and it was time for the next dose.  A few months ago, we realized he didn't need the D-Hist daily anymore.

That's right, folks.  My super allergic kiddo is off all allergy medications!  He has healed to the degree that a mild allergic reaction or an environmental allergy flare can be treated with D-Hist instead of Benedryl.  In the past, those same reactions required lots of allergy medication.  We still keep allergy medications and his Epi-Pen Jr. close by for those scary anaphylactic allergies.  But we have not needed them for a long time. 

Please pray with us that we have good initial results after the procedure on Monday, and good news when the labwork comes back a few days later.  To be honest, if things look bad, I'm not even sure what we'll do.  It would be a very difficult place to be.

In the meantime, Keandre is looking forward to barreling down the hospital hallways in a bright yellow Hummer.  And he is telling everyone we see that his doctor is going to take pictures of his tummy on Monday.  He is so brave! :)

 

1st day of school

  

It all happened rather fast.  One day we were looking for a preschool for Keandre, who really needed his own little adventures to go on while I home school Lucas and Nichole.  We started looking into Montessori schools.

A day or two later, Nichole is begging to go to school also, so we expand the search from Primary only, to schools that also have an Elementary program.

A few days after that, we find it.  The school we were hoping for!  A small, intimate community of families.  Involved and passionate teachers.  Students who are happy and excelling.  Days later, we're in! 

We were loading the car to leave for school when I yelled, "Wait!  Everyone out!  We didn't take a 'first day' picture." :)  Nothing exciting, but I'm glad we captured these.

They are settling in wonderfully.  Nichole is tired and a little grouchy at the end of her day, but after a snack she is full of stories and ready to re-connect after her time away.  Keandre is only gone for 2.5 hours, and when I pick him up he is glowing!  He LOVES his time at school, then is happy to come home again.  His teachers refer to 'work' he does there, but he says, "Mom, it's not work! We're playing and having fun." :)

Two weeks later, my die-hard home schooler, Lucas, decides he wants to join in the fun.  He has so many projects and exciting scientific research to conduct at home that he struggles to focus on his other work.  Now that he's had some time to observe his siblings in their element, he's ready to join them.  I'm so proud of him, and know he'll fit in wonderfully.

Whatever will Brooklyn and I do? :)