Tuesday, August 27, 2013

Adventure, Excitement, and Gratefulness {42 Years}

God always surrounds our family with adventure and excitement, it just doesn’t come in the usual forms of adventure and excitement, such as rock-climbing and hiking in the mountains.


For us, adventure and excitement looks like daily living.  Each and every child God has blessed us with brings adventure and excitement to our lives.  We never know what each day will hold.  Maybe it’s a pizza and bowling birthday party.






Or maybe it’s a day at the lake with friends who are so gracious to invite our big family every summer their beautiful (and fun!) lake house.




Or maybe the thrill of flying airplanes is the best adventure of all! Smile



Or maybe adventure is just daily living with joys such as bubbles.  And love.  And milestones.  And challenges.  And, yes, even things such as pooping, biting, and hitting. Smile  Adventure!




While we never know what each season of our lives will look like, we live each moment trusting fully that God is our guide, He knows the plans He has for us, and He will give us all we need, our daily bread.  Some seasons are more challenging than others, but He is always by our sides, encouraging us to keep trekking through the adventure of life.


This year, God has brought us to a season of exceedingly abundantly, a season of blessing beyond compare, meeting our needs and providing far more than we could ever think or dream of asking.  Oh how wonderful it feels to enter such a season, as the season following losing Chrissie on May 19, 2010, has been the hardest season He’s ever asked us to adventure through with Him.


Of course, God has been oh-so-faithful, every step of the way.  But even with His faithfulness, sometimes we get stuck in those valleys, believing this is what life will be from here on out.  But He has a plan to give us life abundantly, and while it may take days, months, even years for the season to change, He is faithful to lead us from the valley to the mountain top.  (Adventuring through life with God never means staying on the mountain top, but it’s great fun to enjoy the view while it lasts!)


We are so excited that God has asked us to home school Cooper and Conner this school year.  While this means more work for us, He has given us the help we need to make this possible.  He has placed excitement in our hearts, and He has lined up so many wonderful opportunities for these precious sons of ours.


God used this summer to bring us to this new seasons with Cooper and Conner.  While they had an excellent year in public school last year with much progress, we flat out missed them in our home!!!  God began showing us His new plan for this school year, and He has allowed everything to fall in to place beautifully.


We have some new therapies in our home: music therapy and ABA (Applied Behavioral Analysis) therapy!  (These are in addition to physical therapy, occupational therapy, and speech therapy.)  Cooper LOVES, LOVES, LOVES music, and it was always a goal for him to receive music therapy.  God has blessed us with a wonderful music therapist who will be working with the boys every Saturday morning. 

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I have been praying for months to find an ABA therapist to help us with the boys, but time and time again, the plans would fall through due to expense and logistics and availability (there’s an 18-month waiting list in our area for in-home ABA, and this is not covered by insurance).  There are some orphanage-learned (institutional) behaviors we haven’t been able to extinguish, and as the boys get older and bigger and stronger, it’s more and more important to find successful ways to modify behaviors, but we were fresh out of new ideas and methods, which made me pray more for an ABA therapist to help us figure things out.

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A couple of months ago, God introduced me to an ABA therapist at our church who visited with her family.  I had no idea she was an ABA therapist, but God told me to encourage this visitor by complimenting her on how good she was with her sons (who are autistic).  That’s when I learned that she’s an ABA therapist with a ministry to provide in-home ABA training to families in our area!!!  That’s God for you!  Exceedingly abundantly more than we can think or ask!!! 


This wonderful ABA therapist is a Believer who prays for God to help her to see what types of methods/programs to use with each child.  She is now training us to do ABA therapy in our home with Cooper and Conner.  A-M-A-Z-I-N-G!!!!!!


Oh my, ABA therapy is A LOT of work!!!  From gathering reinforcement toys to organizing notebooks and schedules, there’s much work to be done.  Ideally, each boy will receive six hours/day of ABA instruction in our home.  This is such a fabulous program where they’re learning proper behaviors while learning skills and meeting educational goals simultaneously, all using positive reinforcement.  Wow, we’re impressed.  And completely overwhelmed. Smile


So that’s where God has us.  Full of love, life, and adventure.  Exceedingly, abundantly.  As I ponder my 42 years of life (celebrating 42 today!!!), I’m more grateful than ever for my life and all the children, family, friendships, and relationships God has blessed me with. 

Monday, August 19, 2013

Conner’s Gastroparesis

Two weeks ago, Conner received Botox injections to his pyloris (in his stomach area, under sedation) for his reflux/vomiting caused by his gastroparesis. 


I’m sad (and frustrated!) to report that the injections didn’t have the success we all hoped and prayed for.  Conner is still having reflux/vomiting issues, although it does appear to be slightly better.  (Note Conner’s “body bib” in the above photo—we use that to try to catch some of his vomit.)


In June, Conner had a 24-hour hospitalized testing procedure to help determine the exact cause of his reflux/vomiting.  The results of that testing show that he is not a candidate for the Nissen Fundoplication surgery because that would make him miserable.  The cause of Conner’s severe reflux/vomiting is that his stomach doesn’t work.  At all.


Our stomachs are supposed to have muscle contractions that help move the food contents out of the stomach and into the small intestine.  Conner’s has zero movement in his stomach.  None.  This means the food he eats, as well as the liquids he drinks, sit in his stomach, meal after meal, drink after drink.


I believe that because Conner’s small intestine has some movement, it works to help pull the lower stomach contents down into the small intestine, but the majority of Conner’s stomach contents end up coming back up throughout the day, usually a minimum of 10 times/day. We carry rags with us wherever we go, knowing this is Conner’s life.  Sometimes he vomits five times in five minutes! 


Conner has been diagnosed with Gastroparesis.  I’ve read that this condition can be absolutely miserable, causing a feeling of fullness always, along with nausea and vomiting.


The good thing is that Conner is a happy guy who isn’t showing signs of distress.  He is still considered non-verbal (he does say “momma” though!!!), but he doesn’t express his needs/feelings in any way.  He does cry when he’s severely hurt or severely upset.  We don’t see signs of distress with his vomiting though, so that is a good thing.  Watch the video below of Conner to see how happy/sweet/loving/adorable/smart this little guy is:


Having this knowledge helps us to understand what a miracle it is that Conner went from weighing 16 pounds at age six when we adopted him in March 2012, to now weighing 34 pounds, a year and five months later.  Conner is absorbing something from all that he eats/drinks!  And we know for sure he’s absorbing lots of LOVE!  And giving lots of love, too!  Oh how we adore this beautiful boy!!!


We are blessed to have two of the best gastroenterologists in the US on Conner’s case. Conner has taken every reflux (acid blocking) medication available.  None work 100% because of the gastroparesis issue (Conner's reflux isn't due to traditional reflux-causing issues, instead, it's a volume issue--the more volume in Conner's stomach, the more he vomits, since his stomach doesn’t move the food/drink out the other traditional way).


Conner has been on Erythromycin and Reglan to treat gastroparesis, without success. Conner's GI specialists want to move to the next step by trying a medication called Domperidone, which is not FDA approved in the US due to risk of sudden death and cardiac arrhythmia. The medication has a great success rate in helping gastroparesis, but we feel like the risks of the medication are greater than the benefit.  Because Conner had confirmed cardiac issues (unspecified) in Ukraine prior to our adopting him, we feel he’s at greater risk of developing cardiac problems from using this medication.  If our precious son died as a result of trying to treat his vomiting, we would be devastated (of course).  We just don’t feel like we can take that risk.  If Conner were to take Domperidone, he would have to have an EKG every two weeks, along with labs every two weeks, but even with that level of monitoring, he could still die of a heart attack caused by the Domperidone.  There are no studies available in the US of using Domperidone on children, particularly children with Down syndrome who were born with a heart defect that has since repaired itself.


We’re grateful to have received lots of helpful advice/feedback via Facebook friends regarding other things to try to treat Conner’s gastroparesis.  We’ll be visiting with Conner’s gastroenterologists to determine other possible avenues to try.  We are grateful for prayers of healing for Conner, as well as wisdom for his specialists in how to successfully treat Conner’s gastroparesis.  Thank you!

Sunday, August 18, 2013

Happy 21st Birthday, Naomi!


“For I know the plans I have for you," declares the LORD,

"plans to prosper you and not to harm you, plans to give you hope and a future.” 

~Jeremiah 29:11


We love you, Naomi Faith, and we’re grateful God chose to share you with our family!

Monday, August 12, 2013

Emerging Butterflies

Cooper and Conner both amaze me with all of the progress they continue to make.  There is great joy in watching God’s redemption occur before our very eyes. 


Milestone after milestone met by both boys in such short periods of time. 


There’s no doubt God’s hand is clearly upon their journey, freeing them from their forced captivity in the chrysalis (in the form of cribs in Ukraine for six years), then transforming them into beautiful butterflies fluttering and flying freely, bringing Him glory and spreading His joy.


We continually stand in amazement, covered in “goose bumps” (God bumps) as the boys meet milestones most believed they’d never reach.


I have lots of video clips filling my iPhone as I randomly capture the goodness of God displayed through Cooper and Conner.  Today I thought I’d share a few of Cooper’s recent video clips to bring some sunshine to your Monday.  Enjoy!

Thursday, August 8, 2013

Ministry/Mission Opportunity

We’re excited to begin a new adventure with God!


God has been showing us quite a few things He has in mind for the expansion of Boss Your Heart Orphan Ministries. 


While we believe His plans are exceedingly, abundantly more than we could even think to ask, He has given us some immediate direction.


We have a “barnominium” (an apartment above our barn) that God has a mighty mission for!


We’ll be announcing more details soon, but for now, we know God is asking us to use the apartment for His glory, inviting others to come stay with us to do short-term domestic mission trips. 


We don’t have all of the details worked out yet, but we believe God will use this opportunity for His glory in many more ways than we can even think to ask.


This opportunity will be available to anyone who is interested in visiting us and serving alongside our family, short-term.  It might be a family staying the weekend with us to do a short-term domestic mission trip or a team to stay a week or so, serving alongside our family.  We’re super excited to meet every person God brings to visit us!


We believe God will use this opportunity to educate, encourage, inspire, and equip others to care for orphans.  There are so many ways to care for the orphan, from adoption, to advocacy, to supporting adoptive families, to serving adoptive families, to fundraising, to sponsoring, to praying…the opportunities are endless!  It will be an incredible blessing for us to get to share this with others in real life (not just via our blog!), and we look forward to meeting many of you who have prayed for us and supported us over the years!


If you are interested in volunteering with this part of our ministry, please let me know.  We are grateful for all help and support!


If you would like to come stay with us, let me know.  We hope to launch this on Chrissie’s birthday, October 8.  Boss Your Heart Orphan Ministries was founded in memory of Chrissie, to help carry out her legacy by helping orphans around the world on behalf of our precious princess, who was once a forgotten orphan.


We are in the organizational phase of this new ministry, with lots to do to launch it.  Here are some of our immediate needs:


Immediate items we are in need of:

  • bunk beds and mattresses (several sets, all configurations are fine)
  • comforters/quilts for the beds in the apartment


Immediate services we are in need of:

  • someone to set up a system on our websites for online mission trip bookings
  • someone to help with marketing and management of the mission trips
  • someone to create promotional materials and possibly mail brochures to people who inquire
  • people to help get the apartment ready and decorated


Please leave a comment and/or send me a Facebook message and/or email me at BossYourHeart {at} gmail {dot} com. 


Thanks so much!

Monday, August 5, 2013

Another Hospital Procedure Today

Conner is having a hospital procedure done today.  As you know, Conner has had SEVERE reflux (vomiting 20-40 times/day) since we met him in Ukraine in January 2012.  Nothing we’ve done has been able to cure Conner’s reflux.  No diet changes, no medications, nothing has made a difference, and, believe me, we’ve tried everything available as a typical cure.


Conner even did a 24-hour overnight hospitalization specifically to test for specific causes of his reflux.  The results of this in-depth study show gastroparesis (among other things), which basically means the stomach is unable to empty the contents through digestion like a typical stomach would.


We’ve tried multiple medications for gastroparesis, with no luck.  So, today Conner will have stomach Botox injections for gastroparesis, with hopes of reducing vomiting.  Oh how we pray this procedure will help reduce the amount and severity of Conner’s reflux.


And, for your Monday enjoyment, I wanted to share some videos of Conner and Cooper taken Friday (Conner’s birthday).  Enjoy!




Friday, August 2, 2013

Happy 8th Birthday, Conner!

What a blessing you’ve been!

(Click HERE (from a computer) to view video if it doesn’t play correctly.)

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