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!

Lucas' first day of school

 

 
As I shared last week, Lucas chose to enroll in school with Nichole and Keandre.  We decided we'd better do another 'first day of school' picture since we did that for Nichole and Keandre last month.

Keandre wasn't feelin' the whole picture-taking thing, so he waited patiently off to the side. ;)  (Actually, he was mad that I was 'making' him go to school that day.  He was over it about 1 minute later.)

Lucas was pretty nervous that first day.  He was concerned that he'd be behind, or that he wouldn't understand how to do the work.  Thankfully he settled in quickly, and he says he enjoys school.  I am so proud of him for making this decision, sticking with it even when he was nervous, and settling in and making friends so quickly.  I think it will be a great rest of the year for him!

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? :)

ON HOLD

Yep, you read that right.  We're on hold.  Our adoption, that is. 

This journey has been hard, but so worth it.  We can look back with complete confidence, knowing we followed God and we were where we were supposed to be, when we were supposed to be there.  (How's that for a tongue twister? ;)

Important connections were made during each of our failed adoptions.  And God grew us and our children through each experience.   

We are always open to another.  But lately we've noticed a new contentment stealing in.  For the first time, we're not talking constantly about 'our next baby'.  We're at peace with where we are.  Four children is keeping us very busy right now.  And it's lovely to see that we LOVE having four children.  They really do balance each other out!

We will be a 'back up' or 'emergency placement' family for our agency for a while yet.  But it seems as if our drive to adopt, our longing for another baby, has disappeared for a while. 

I promise it's not because it was too hard, or because the journey scared us away from trying again.  Adoption is not easy.  But it is *always* worth it. 

We will adopt again in a heartbeat if/when we feel God is leading us that way. :)

For now, we're taking care of business at home.  We're putting extra time and energy into caring for Keandre's health (he's down to only 10 safe foods -- more on that later).  We're helping Nichole and Keandre adjust to new levels of understanding and grieving regarding their adoption stories.  We're pulling back from extra activities and making sure our priorities are in the right place.  (Always a work in progress!)  Best of all -- we have a peace about this.

And.....here's the awkward part.  The money.  Our plan for now is to hold onto that money until we feel clear direction on what is next.  It's possible God is just giving us a rest from the journey, and time to care for other needs.  We do know that if our agency called us and needed us, we would jump in wholeheartedly, and our children would be ecstatic!  If that doesn't happen, we're planning to donate the money that is currently in our adoption fund to a non-profit organization that gives adoption grants to families in the process and who are struggling to pay the legal fees.  (If you prefer to have your donation returned, please don't hesitate to contact me.  We understand.)

Phew!  I feel better now.  This has been weighing heavy on me.  Maybe now I'll have the energy to catch up on those body butter orders. :)

A few of you are breathing deep sighs of relief right now.  Seriously, I am so flattered that you keep coming back for more!  Don't worry -- I'll continue to sell our organic whipped body butters and chapsticks. :)  But for the time being, the money will fund other important family needs, like treatment for Keandre's health issues.

jump, jump, jump!

We have very busy kiddos.  They needed a new way to burn some of that energy.  I needed a break from them asking to ride their skooters in the front yard all the time.  So we splurged for a 7.5 foot diameter trampoline.  Best money we've spent in a long time. :)

We were hit with a cold front last week.  It was early still, and just 45 degrees out, and they jumped until their cheeks hurt from the cold.  (We're kinda wimpy here in S. AZ.) 

Gotta love those rosy cheeks!

We don't let the kids jump in socks -- too slippery.  Nichole was jealous of Keandre and Brooklyn's footie pjs, so she borrowed Keandre's spares.  Yeah....that didn't last long.  She said they were itchy!  And she's a bit of a fasionista and a girly-girl, so the pattern didn't help any. ;)

chores!?!

     

  (source)

Does that word cause a pit in your stomach?  It does for me!  Our job as parents is to prepare our children for the world that awaits them -- spiritually, emotionally, and physically.  This includes the life skills that will help them be successful in life. 

Andy and I realized recently that we had slipped into that old parenting habit of constantly reminding our children to do what they already know they need to do. It was miserable for us and for the kids.  And it wasn't working.

Last I checked, Andy's boss doesn't bribe, cajole, or nag to get him to stay focused on his work.  It is Andy's responsibility to get his work done on time.  If he does, he is rewarded with good relationships with his boss and coworkers.  He is also rewarded with a paycheck!  If he doesn't do his work, 'real life' rewards him with some natural and logical consequences. 

Our former approach not only wasn't working; it was not preparing them for a world where they will not be reminded over and over to do their work -- they will receive a  natural or logical consequence (failed grade, lost job, etc.) and life will go on.  When they are grown, it is up to them whether they learn from those experiences, but in our home, we can talk about it and learn together. 

I had already prepared chore charts for each of them a few months ago, so they knew exactly what they needed to do, and when.  (ie, 'before lunch', 'before playing with friends', etc.)  The novelty had worn off.

We have now been using our new system for a couple weeks now, and I have to say we are all very happy with it!  We still use the above pictured chore charts.  In addition, here is what we did:

Please excuse the wrinkles on my 'example' chart. 

A certain toddler stepped on it as I was taking the picture. :)

We raised each child's allowance from a conservative $.25 per year (Nichole was receiving $1.75 per week at age 7) to $.50 per year (Nichole now receives $3.50 per week).  Lucas receives an addition $2 per week for caring for the chickens, rabbits, turtles, etc.

Then Andy and I considered the tasks that we find ourselves regularly nagging reminding them to do, and put a new policy in place -- they need to do their own work, or plan on paying someone else to do it.

Why is this a reasonable approach, you say?  Well, the reality is that we don't all keep up with what we need to do.  For instance, if Papa doesn't have time to mow his lawn, he might hire Daddy or Uncle Ian to do it for him.  If I've been focused on home schooling and I'm behind around the house, I occasionally hire a cleaning service to come and help me catch up.  Those are logical and acceptable alternatives to doing the work ourselves.

Our kids get a kick out of the fact that they don't have to do their work if they prefer not to.  Instead of hearing, "_____, you still haven't put your dishes in the dishwasher!", you will see Daddy clean up Sunday lunch, notice that a child was excused but did not take care of his dishes, do it for him, and note it on the chart.  Later, he will gently remind him, "You were busy with other activities. The job needed done, and I was happy to do it for you."  If the child complains about losing the money, the reply is, "You are welcome to do it yourself next time." :) 

Paying us to do their work for them is not a discipline....it is a privilege!  They get to choose to use their money that way if they wish, and we focus on the fact that we are all a team together, keeping the home running smoothly.  They are also learning the value of saving and spending.  (If they go into the negative, which we haveen't faced so far, they will need to either work to pay us back, or lose a privilege.)

On Saturdays, we go over the chart with them. (No shaming or tsk-tsking over how often we may have put their dishes in the dishwasher for them, or the fact that they skipped their chores 3 times this week.)  Then we divvy up the money due and head to a nearby thrift store, where there is much happiness as quarters and dollars are spent, and much searching for the 50% off colored tags.  (They are also learning how to shop for a bargain! :)  Each of them checks out on their own so they can hand over their money and keep their own change.  Doing this regularly helps them value their money in a way that we didn't see when it was just sitting in their bank.

How do you handle chores around your house?