Friday, August 31, 2012



This is a photo of my desk.  Not pretty.  Lacking organization (just slightly!).  A mess.


This is what my life sometimes feels like, too.


But my God reminds me that He is more than enough.  When I am weak, He is strong. 


I struggle with being a Martha when I want to be a Mary. 


Here is the scripture I’m currently gnawing on:


“You do not have because you do not ask God.”  James 2b


For me, the “do not haves” are not earthly possessions.  It’s balancing my time with the discipline to divide things up more equally between relationships (God, husband, children) and responsibility.  I seem to fail miserably at both much of the time.  God showed me that I have not this desire because I ask not often enough for Him to be my more than enough in this struggle.


Off to ask my God to help me balance, to be the wife, mom, sister, daughter, and friend He created me to be.  I used to pray this prayer regularly, as in every. single. day.  I’m going to make that commitment again, claiming James 2b.


Have a blessed weekend!

Wednesday, August 29, 2012

Twisting, Tossing, and Turning

We survived Selah’s sleep study last night, but not without tears, twisting, tossing, turning, wrestling, head banging, kicking, screaming, biting, and lots and lots of patience on behalf of the sleep technician!


I decided very last minute to take our 14-year-old daughter, Mattie, with us to the appointment.  While the paperwork stated that only one guardian would be allowed to stay with the patient, I simply could not imagine even traveling to Dell Children’s Hospital with Selah and me alone in the vehicle.  I wouldn’t be able to tend to her needs (and she is VERY high need—all the time!), I wouldn’t be able to make sure she stayed awake, I wouldn’t be able to pacify her with the iPad, food, sippy cup, etc.  She needed to eat her dinner while traveling—there were just too many logistics for one driver to take care of.  Mattie was eager to attend and help, and after three phone calls to three different numbers/persons associated with the sleep lab to beg permission, with no response, I decided to take the “ask forgiveness than permission” approach.


And, let me tell, you EVERYONE was glad we did!!! 


Selah needed Mattie’s assistance while traveling, I needed Mattie’s assistance to get Selah and our stuff into the hospital (we happened to be in the middle of a parking lot domestic dispute that led to the infamous hospital “code grey”, which required security. 


As soon as we got through registration (which Selah banged her head throughout), even with Mattie being present, we strolled down to the sleep lab, where things are supposed to be quiet and serene so as to not interrupt other sleep study patients.  Well, Selah didn’t quite understand that rule.  She promptly started tearing the room apart, trying to climb all of the furniture in order to rip things off the walls, all while squealing and screaming and jumping and throwing fits—with TWO of us present trying to calm and corral her.  If I were a first-time mom, I would have been mortified by what the technician was thinking.  Thankfully, once you’ve had 11 kids, many with special needs, you no longer are concerned with what others think. :-)  (I did share a little of Selah’s miracle story later with the technician, not that her story would necessarily change any judgment upon me as a mom, but it would give God glory that Selah is even able to walk, run, jump, climb, talk, squeal, scream, and destroy a room!)


After 30 minutes of terrorizing the room and disturbing everyone within 50 feet of our room, Selah climbed into the suitcase and shouted, “Bye-bye?!?!”  It was a question and a declaration.  She got so upset when we didn’t leave—she simply couldn’t understand why we were in this tiny little room with nothing to do but sleep, which isn’t Selah’s favorite activity, nor does she excel at

The sleep technician told us to go ahead and give Selah her variety of sleep medications.  Her advice was to get Selah to sleep, then she would put all of the leads on her since she knew she’d pull them all off if the tech attempted this while Selah was awake and wild.


Currently this is what Selah takes in order to help her sleep:

  1. Kapvay (by prescription—this is an extended release version of Clonidine).  Selah takes .75mg at bedtime, and another .75mg when she wakes in the night.
  2. Somno Pro (OTC—a combination of melatonin, L-Theanine, and 5HTP), 1 tablet.
  3. Zyrtec (OTC allergy medication, that happens to make some people really sleepy), 5ml at bedtime.
  4. Prevacid Solutab (by prescription—for reflux/GERD), 15mg at bedtime (and another 15mg before breakfast).


After we administered Selah’s sleep meds and got her in her PJ’s, we took her on a 30-minute stroller ride, hoping she’d fall asleep.  It didn’t work.  We went back to the sleep room, which didn’t have a rocking chair, so all three of us (Mattie, Selah, and me) all got into the twin bed.  We watched Baby Einstein on my iPhone, then watched Barney on the iPad.  Selah still didn’t fall asleep, but she was C-R-A-N-K-Y.  She wouldn’t lie still and calm down, but we persevered with singing and using our bodies to rock her, walking to bounce her, etc.  Eventually, around 9PM, Selah fell asleep.  (We arrived at 7:30PM.) 


We were all relieved that Selah had fallen asleep.  She was sprawled out across my chest and body, so Mattie went to get the sleep technician.  Unfortunately, once the tech started applying leads to Selah, she woke up and was NOT happy.  It took 2.5 hours to get all 27 leads attached to Selah.



Selah hates for her skull to be touched any time, she she particularly disliked the process of getting the 20+ leads to stick to her skull and face.  That process involved rigorously rubbing each spot where a lead would need to be placed with an exfoliating cleanser on a large swab.  That needed to dry before the lead could be placed.  Then the lead would get smashed onto her skull using something like looked like a big glob of rubber cement.  Then a muslin strip was placed over the lead.  And finally a really stinky glue (literally—it smelled like fake nail glue and must be removed with acetone!) was globbed all over the muslin to make sure the leads stayed in place throughout the night.  We were told that Selah’s hands would be in restrains if she wouldn’t leave the leads on, so I did everything imaginable to distract Selah and her hands!!! 


All I can say is PRAISE GOD that Mattie was with me!!!  Mattie held Selah while I distracted with the iPhone, iPad, food, water, singing, dancing, and being silly.  None of my tactics made much of a difference (except the blueberry muffins!), but I tried to continuously have something in each of Selah’s hands.  She would get fighting mad if I restrained her hands, so distraction was the best technique.


It took until 11:45PM to get all of the leads on and in place.  Because Selah was having an EEG (to monitor seizure activity), in addition to the sleep study, she had 27 leads instead of 14, most of which were on her skull and face.  The above photo was taken about  halfway into the process of sticking leads on her, then I couldn’t use my phone to take any more pictures because I was too busy distracting Selah, and then I was too nervous to disrupt her with a photo after she calmed down!!!  Eventually, all we could see were Selah’s beautiful eyes because everything else was covered with a lead and muslin and tape!


Selah fell asleep at midnight, out of sheer exhaustion.  All three of us were still in the twin bed.  Then the tech told us that Selah would need to sleep on her back.  Oh no!!!  Selah NEVER sleeps on her back, only on her stomach.  We woke her several times as we attempted to get her onto her back.  She wanted NO part of that!  Eventually, Mattie got out of the bed (by her choice :-) to go sleep in the reclining chair, leaving just Selah and me in the bed.  Selah woke and wanted Mattie to come back, but the technician said we would just deal with her crying and try to get her to sleep on her back in the bed.  She cried so hard that some of the leads melted off her face!!!  We got those back on while Selah slept on my chest.  Then the technician helped me position Selah on her side because every single time we tried to position her on her back, she woke up screaming and fighting.


Then the tech had to put a cannula in Selah’s nose to monitor her breaking for apnea.  That woke Selah, too, as it had to be taped in several places and it had an extra prong/tube that curved into her mouth, as well as the two up her nostrils, so Selah didn’t care much for that device.  The tech had to come in every few minutes throughout the night to reposition the cannula, and then the cannula stopped working around 4AM, so a different device got taped onto Selah’s nose/face. 


The good news is that Selah slept soundly enough to get sufficient sleep data!!!  She actually slept extremely well, especially considering all of the stuff stuck to her, from head to toe.  We were even able to get several hours of data with Selah on her back!!!  PRAISE GOD!!!!!!!  Selah basically slept from around midnight until 6:30AM, which is fabulous for her.  The tech came in every few minutes to adjust her cannula and to try to position Selah onto her back, but Selah slept through most of it.  Every time Selah stirred throughout the night, I just patted her and she promptly went back to sleep, which is much better than Selah does at home!  Usually when Selah wakes in the night, she’s awake for a minimum of one hour, but sometimes is awake up to five hours before she goes back to sleep!!!  And she usually wakes several times during the night, so I’m EXTREMELY grateful that Selah slept so well for her study, which must be attributed to God answering the pleas of His prayer warriors on behalf of Selah.  I cannot thank you all enough for praying!!!


I seriously couldn’t have done this without Mattie’s help, so a huge THANK YOU to Mattie for sacrificing her night in order to serve others.  We won’t have results of the study until September 7, but I’ll report the results on the blog after my meeting with the sleep specialist.


Now, I’m off to try to get some rest!!!


PS  Conner and Cooper had a great first day of school yesterday—yeehaw!

Tuesday, August 28, 2012

1st Day of School and Selah’s Sleep Study

Cooper and Conner’s first day of school is today.  We visited the classroom yesterday, and both boys were showered with attention and affection from their teacher, their occupational therapist, their speech therapist, and their physical therapist.  I know they’re going to soar at school, but I’m sure going to miss them.  I couldn’t be more grateful for the team of teachers and therapists who will be working with Cooper and Conner.  God’s hand is all over these school details, which, of course, gives me great peace.




Conner got his PICC line removed yesterday—WOOHOO!!!  His labs look good, but his IgG levels are still low, which indicates an underlying immunodeficiency.  He had 15 ml’s of blood taken yesterday for more labs, and then he’ll have to return next week to get even more labs drawn.  Conner’s feeling great and completely back to his normal self, which we’re all so grateful for.


Selah’s sleep study is tonight.  I’m really not looking forward to it, as I don’t think either of us are going to get much sleep.  We must arrive at 7:30PM and plan to stay until between 5-7AM.  The sleep study is done at Dell Children’s Hospital in their sleep lab.  Selah will have all types of electrodes stuck to her, which I’m quite confident she’s not going to leave in place without a continuous battle.  Since Selah doesn’t even sleep much in her own house, in her quiet sleep chamber for a princess, where she has a room all to herself with a HEPA filter and fan to drown out all disruptions, I just don’t have a very good outlook for this sleep study.  Basically, they’re just doing the sleep study to rule out seizures, apnea, and any other common forms of sleep disruption.  The sleep specialist believes it’s neurological (since Selah is missing the section of her brain that connects the right and left hemispheres), but, unfortunately, there’s not a “fix” for that. 


The sleep paperwork states that only one person may attend the sleep study with the child, which would be me.  The paperwork also states that a chair will be provided for this person, so plan to bring a pillow and blanket to try to make the night more comfortable.  I never sleep well in a chair regardless of whether I have a pillow or blanket.  The paperwork also states that Selah should  not bring any live animals with her to the study.  I kid you not.  I’m assuming they had to write this in the rules because someone actually brought a live animal with them to their sleep study in the past.  Crazy.


I would GREATLY appreciate prayers that Selah would sleep well and that I would, too!!!  Pray that Selah will be a perfect sleep patient, that she’ll leave her electrodes alone, that the technician will be able to gather all of the data necessary, and that the study will be successful and helpful in determining how to help Selah sleep better.  Thank you!!!

Monday, August 27, 2012


Today is my 41st birthday, so I’ve spent a little time reflecting upon my life, particularly the events of this past year.

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  • Never did I imagine my husband would surpass so much more than I ever prayed for.
  • Never did I imagine I’d have 11 of the most amazing kiddos in the entire world who continuously amaze me with their hearts and actions.
  • Never did I imagine our kid count would go from 12 to 11 in 2012, that we’d have to send one of our children (who wasn’t yet adopted) back to his former family.
  • Never did I imagine I’d have a daughter living in heaven.
  • Never did I imagine my mom would also be in heaven on my 41st birthday.
  • Never did I imagine we’d adopt two children who have Down syndrome.
  • Never did I imagine the blessing of an undeserved hug from a child TWO children with Down syndrome.
  • Never did I imagine Summer of 2012 would hold three separate hospitalizations for three separate family members, plus Conner’s and Cooper’s hospitalization March ‘12, Cooper’s club feet repair and surgery March-May ‘12, plus 2 ER visits for Kiefer, one for Sawyer, and one for Selah.  Whew!
  • Never did I imagine I’d know how to flush PICC lines and administer IV antibiotics.  (Can’t believe with all of our hospitalizations/special needs that we’ve never had a kid with a PICC in our home before.)
  • Never did I imagine that on my 41st birthday, I’d be taking two sons who have Down syndrome to visit their public school classroom, then taking Conner to his infectious disease doctor to hopefully have his PICC line removed.
  • Never did I imagine I’d consider the responsibilities on this day a privilege and joy.
  • Never did I imagine God would change me so greatly, perpetually circumcising my heart, lending me eyes to see life from His perspective—to see blessings instead of burdens, to count hardships as joy, to love unconditionally.
  • Never did I imagine the depth of God’s love for me—deeper than I can fathom.


I still have a long way to go, but praise God, He’s still working on me!!!

Saturday, August 25, 2012

A New Path

Once upon a time, I taught public school.


Until I had my first baby in 1996.  He was born the day after school ended, on May 25.  From that day on, I never returned to teaching.


And not one of our children have ever attended public school either.  Not because we feel like it’s bad or wrong, but because God asked us to homeschool.  (We did have a season where our oldest son attended a private school through first grade.) 


I love each of my children fiercely, and I’ve been so very grateful to God for growing the friendships and relationships that He’s formed through homeschooling.  Spending pretty much 24/7 together does amazing things for hearts and souls—a closeness that’s not easy to find, nor create.


So my heart feels a little heavy because God has asked us to enter a new season, and just like when He called us to homeschool, I have timid feelings.


God has asked us to send Cooper and Conner to public school this year.  They will be in an amazing self-contained Kindergarten special education classroom with a fabulous Christian teacher, with awesome therapists (who all happen to be Christians, too), in a great primary school in our  little town.  This is a milestone for us…and for Cooper and Conner.


And while my heart feels heavy, I KNOW this is what God has asked us to do.  I know Cooper and Conner will love it.  I know they will learn so much more than we can fathom.  I know they will grow by leaps and bounds.  I KNOW these things, and yet the thought of having them away from us for about 8 hours/day almost gives me heart palpitations!!!  Seriously.


I almost feel like someone else will be raising our children—like we’re going to miss out on so many of their firsts, and yet they might not reach many of those firsts if they don’t attend public school.  And so we celebrate, in a bittersweet sort of way, trusting the One who knows us intimately.  He knows what is best, even if my heart starts pounding at the thought of being separated from Conner and Cooper 40 hours/week.  Eeeeeek!!!


The boys’ teacher came over Friday night, along with their school occupational therapist.  I love them both, and they’re part of God’s testimony to help me with this transition.  Every single person we’ve talked to within our little public school system has bent over backwards to accommodate our little guys.  They all so excited about the boys coming to school.  Their enthusiasm brings joy to my heart.  I’m so very grateful for each of them and their hearts for our boys.


The first day of school for our guys will be Tuesday, August 28 because Conner will see his infectious disease doctor Monday the 27th to get his PICC line out (as long as his labs all look good).  I’m going to take both boys to school for a little orientation on Monday for an hour or so, then we’ll be off to the doctor.  Conner’s completely recovered from his bout with Salmonella…praise God!!!!!!! 


Please be praying for my Momma’s heart to release these boys daily, trusting in the One who loves them more than I.  Pray for both Conner and Cooper to LOVE school (I truly believe they will), and pray for everyone involved in their care, development, and education.  This is such a big milestone for us.  Grateful for God’s voice, direction, provision, and perfect plans…always.

Friday, August 24, 2012

Two Videos of Miracles

Cooper (age 7, home from Ukraine for 5 months now) has taught us so much over the last five months.  He’s a smart guy who is growing and progressing by leaps and bounds.  He is still non-verbal, but a miracle occurred last night before our very eyes.  Who knew what a good ole American French fry could do?!?!  WOW!!!  Cooper accomplished three of his target goals in one sitting with one silly French fry!!! 


Watch the video below to see Cooper sign “more”, chew his French fry, and reach out to take another fry from me to feed to himself.  I’m truly amazed, as he’s never done any of this before.  We’ve been working hard on all of these goals, and over the last week or so, Cooper has been exploring the concept of chewing/gnawing, but nothing like this.  The boy CAN feed himself, chew, and ask for more!!!  I wish I had known how Cooper would react to French fries.  When I first gave him a small bite, he actually giggled and squealed and kicked his feet with excitement, then eagerly signed “more, more, more”.  That is a moment I will always cherish.  Thank you, Jesus!


And then we have our miracle girl, Selah, who is now 22 months old.  Selah has hydrocephalus and agenesis of the corpus collosum (missing the section of her brain that connects the right and left hemispheres), and her doctors didn’t expect her to live.  Selah joined our family at age 7 weeks, and she continues to completely WOW all of her specialists.  Her vocabulary and speech are developing rapidly.  After being gone 12 days at the hospital with Conner, I was quite surprised to see how much Selah had changed just in that short amount of time.  Selah used to never look at books, no matter how much we tried to “force” her to love literature, but yesterday she cuddled and looked at books with Mattie and me.  What a delight to witness more miracles unfolding before our very eyes.  Don’t miss six minutes of Selah showing off God’s glory in the video below.  Thank you, again, Jesus!

Thursday, August 23, 2012

This is an awesome opportunity to make the most of your donation to Village of Hope--Guatemala!  Your donation will be matched by a generous donor!  You also have a chance to win a Kindle Fire!  Whatcha waitin' for?!?!  :-)

Every child deserves a safe place where they can be a kid.  A place where they can freely problem solve,
use their imagination, develop physical strength, coordination and balance. A place where they can grow, dream, imagine, explore and gain a sense of self.

For many children in Guatemala this is nonexistent.  Many of the children here lose their childhood
too quickly due to the stress of just trying to survive.

Many of us have memories of our childhood days spent swinging on swings, sliding down slides, bouncing up and down on the teeter totter with a friend, hanging on the monkey bars, running through the grass and exploring the world around us. A vital and important part of our childhood development.

The children who come to Village of Hope often have lived in desperate poverty and will for the first time have a safe, permanent place to call home. Our goal is to provide them with the opportunity to grow and develop into the humans the Lord intended them to be through providing a safe place to grow-as every child deserves.

One of our big needs here at Village of Hope is a safe place for the children to play.  Because the
facility is built in a mountainous area this isn’t as simple as putting in a swing set and a soccer goal. A large area will have to be dug out, a retaining wall put up to keep the mud from sliding and then the playground will be put in.

View from a different direction...

We have been blessed by a donor who has offered to match up to $10k for the ground to be dug out, a retaining wall constructed, a grassy area planted, and a playground for the children at Village of Hope. For every $1 you give between now and Sept. 6th it will be doubled! What a great way to invest in the kingdom and see your dollar stretched! AND to make this even sweeter- everyone who donates gets entered into a drawing for a chance to win a Kindle Fire!!!

To give to the 10K match please go to: Lifesong for Orphans and please indicate it's for Village of Hope Guatemala- 10K Match.

Thank you so much!!!

Wednesday, August 22, 2012

10 Steps

Just a quick update to let y’all know that Conner is doing AWESOME!!!


His appetite has returned, he’s staying hydrated, and his energy level is back to normal.


And last night…


Drum roll…


Conner WALKED!!!!!!!!


I know this picture isn’t good quality, but it’s all I was able to capture.  Conner caught us all completely off-guard when he started walking.  He took about 10 steps, independently, without holding onto anything.  The most  he’s ever done is 4 at a time.  We were all shocked to see him go so far!!!  Go Conner!  Go God!!!


Conner will keep his PICC line until this Monday, August 27.  He’s receiving IV antibiotics at home (I’m his nurse for drug administration, and he has home health services for blood draws and dressing changes).  If all of Conner’s labs look good, he’ll get the PICC line taken out Monday, and hopefully life will return to normal for all of us.  Conner’s infectious disease doctor explained that she’s seen cases where children relapse and get Salmonella again after stopping their IV antibiotics, so pray against any further infections/attacks.


Thanks so much!

Sunday, August 19, 2012

We're Home!

I forgot to update here to let you all know that Conner was discharged from the hospital Saturday evening after a 12 day stay.

He's home and doing awesome. He will keep his PICC line and IV antibiotics for 8 days. I am his home "nurse" and he also has home health care through our private insurance to do his dressing change and blood draws.

We're loving being together again. Conner squealed when we got to our gate--he knew he was HOME!!! (Thanks to Rachel Immel and family for the fun gate decor!!!)

Saturday, August 18, 2012

It Cannot Be!

Today is Naomi’s 20th birthday!!!  This just cannot be true!!!!!!!


Naomi joined our family on June 19, 2010 at the age of 17, just one month after Chrissie went to live with Jesus.  Naomi survived the horrible Haitian earthquake, and she and her birth mother prayed for Naomi to be given a chance to be given the gift of life by coming to America.


Naomi has flourished in her spirit over the last year, particularly within the past 5-6 months.  If you didn’t read my post about Naomi last year on her birthday, click HERE.   As we’ve gotten to explore Naomi’s learning difficulties, we’ve discovered it’s more challenging than we originally thought.  But, God has shown us that He has a plan for Naomi, to prosper her and give her a hope and a future.  It just looks different than most Americans would imagine for a 20-year-old.


Naomi isn’t capable of living independently, but she is absolutely thrilled to be in a family.  Her goals and desires line up much more closely with God’s than what we originally imagined for Naomi.  We now know that God has a plan for Naomi to stay with Matt and I indefinitely, and we celebrate that gift.  We believe Cooper and Conner will most likely be with us indefinitely as well, but we truly view this as a rare gift.  Not everyone gets to have the blessing of their children never moving out, to remain active in parenting until God calls us home.  What a rare blessing that is!


Naomi has blossomed since Conner came home from Ukraine.  Naomi truly loves helping with young children, but finding a way for her to serve in this capacity was a bit challenging…until CONNER came home from Ukraine!!!  On the very first night that we came home from Ukraine, Conner crawled directly into Naomi’s arms.  From that day forward, Naomi has taken Conner under her wing.  One of our kiddos describes Naomi as Conner’s “Nana”. She is able to serve in a grandmotherly role with Conner—she absolutely adores him, helps whenever/however she is able, and lets him get away with anything and everything, spoiling him rotten!!!  Just like a grandma would do, and that’s exactly what Conner needs, and apparently God knew that was what Naomi needed to.  I’ve never seen her so happy, absolutely flourishing, overflowing with pure joy!!!


We are blessed to have Naomi as our daughter, and we’re humbled and grateful God would choose us to be her forever family. 


Happy 20th birthday, Naomi Faith!


PS  Conner was moved to the regular floor of Dell Children’s Hospital. He’s doing awesome.  He’s tolerating oral feeds well, and there’s a slight possibility he’ll be able to go home this weekend.  He will have his PICC line in for 2 weeks of IV antibiotics at home.  Home health has to be set up (insurance must approve it, and an agency that will come out to our little town in the middle of nowhere AND work with Aetna is a challenge), so pray that all of this will come together quickly.  Conner’s case manager believes Conner won’t be able to go home until next week, but the doctors said it might happen this weekend.  Thanks for praying!!!

Friday, August 17, 2012

From Conner

I’m hijacking my mom’s blog because she’s a little bit exhausted.

photo 1

I love making silly faces at my mommy.

photo 3

I can always make her laugh.

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She always tells me how precious I am.

photo 5

Hmmmm…lemme think about it…yep, I think she’s right.


Yesterday I got to drink a little bit of my nutrition drink.  I was able to hold down 1/2 ounce nutrition drink mixed with 1/2 ounce Pedialyte every hour.  It tasted really yummy, and I wanted to drink more, but the doctor told my mommy to only give me as much as she did.  I forgot how much I like for my mommy to feed me.  For six years, I was used to having an empty belly, but now I like the way it feels to have some yummies in my tummy!!!


I only had one poopy diaper yesterday, but it was a big blowout.  I didn’t mind because I got to take my first bath in 10 days!  I LOVE baths!  I splashed water all over the floor and everywhere I possibly could.  It was lots of fun!

photo 1

I didn’t cry one single time yesterday.  I charmed everyone who came into my room.  I rocked in my mommy’s arms for most of the day.  When I wasn’t in Mommy’s arms, I was cracking myself up in my crib.  I seriously love the balloon and crinkly lion stuffed animal my daddy brought me.  I’m discovering that toys really are fun to play with and not just throw.  Of course I still like throwing stuff, but what boy doesn’t?


I was supposed to be going to sleep last night, but instead I was mischievous and pulled apart one of the lines/tubes that was supposed to be connected to my PICC line.  My mom said it was the line that was supposed to carry my TPN (IV nutrition) into my body, but I thought maybe if I pulled it apart, they’d feed me some REAL food!!!  I didn’t realize that my blood would pour out of the line.  Oh well, I tried.  And it was sure fun to see my mom get all of my nurses to come help her get it straightened out, put back together, and cleaned up.  I didn’t think it was a big deal, but apparently everyone else did.


After they got me all cleaned up, my mommy tried to get me back to sleep, but I really wanted the party to get started.

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I’m feeling so much better, and I think they should let me go home.  I was trying to invite everyone to my late night crib party, but no one showed up except Mom.  Oh well, we had fun together.  Did I mention  how much I love my balloon?

photo 4

So my mom tells me that I can’t go home until I’m able to drink my nutrition drinks and enough water/fluids to stay hydrated.  Well, if the docs would let me have more, I’d show them that I CAN do it because my mommy tells me I can do all things through Christ, who gives me strength.


Will you pray for me to be able to go home this weekend?  I really miss my family!  The doctors are still watching what my mom says are “wonky” labs, but I haven’t heard if my platelet and blood counts are returning to normal or not.  I hope so because I really want to go home.  I’m really missing being able to go outside and play with my siblings.  Since I’ve been been required to remain in isolation here (because of my Salmonella), I can’t leave my room for anything.  I lived that life for six years in my former orphanage where I stayed in a crib all the time.  I’m ready for freedom again!


My doctors don’t think I’ll be able to go home until sometime next week, but I’d love to surprise them and show off what my God can do!  Thank you for praying for me!


PS  I’m still awake at midnight!  My clinical assistant just told me that out of all the patients he’s seen in the 8 months he’s worked here, that I’m his favorite.  What an honor!

Thursday, August 16, 2012

Conner's Doing Great!

Just a quick update to let you all know that Conner's doing great. He got moved to IMC (intermediate care) yesterday, which is a step in the right direction.

He's been a bundle of joy, laughter, giggling, flirting, smiling, kissing, hugging, and pure love. No more tears and pain!

Hallelujah, our little lovie lamb is back!

He's allowed to have 1/2 ounce Boost nutrition drink with 1/2 ounce Pedialyte per hour today to see how his gut responds. Once he's able to maintain hydration and electrolytes orally without an increase in diarrhea and vomiting, they'll consider discharging him. They're thinking next week, I'm praying for this weekend!!!!!

Wednesday, August 15, 2012

Little Lovebug


Conner’s last 24 hours have been SOOOOOOOOOOOO much better than the prior 48 hours.  So grateful for the healing of our Jehovah Rapha, moving Conner in the right direction with less pain and fewer tears.


Yesterday they removed Conner’s external jugular vein IV, which seemed to make a huge difference in his contentedness.  Perhaps he never had a spinal headache and this particular IV (which wasn’t stitched in place, just held with Tegaderm (like a big clear Band-aid) was aggravating him.  It certainly looks like it could have been the culprit, with bruising and a few small cuts, and a puncture wound:

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For much of the day yesterday, Conner was in protective mode, not wanting anyone to come near him.  While I was so thankful he wasn’t bawling, my heart was still broken to watch my little love bug retreat into this state.  He usually reaches out for whomever comes within 3 feet of him, wanting to hug someone’s neck, but yesterday he stimmed wildly (self-stimulation—rocking in his crib, waving his hands in front of his face as stimulation, retreating from the world around him).  We tried to leave him alone as much as possible, in an effort to help him self-recover from all of the overstimulation of pokes, prods, blood pressure cuffs, needles, probes, etc.  By mid-afternoon, Conner was allowing me to touch him, then he gave me a kiss!!!  Thank you, Jesus!


Eventually, Conner was comfortable with sitting next to me in my little fold-out chair bed.  He was laughing and happy, but he didn’t quite want me to hold him.  I was rubbing his back, which was a huge victory (that he’d tolerate my touching him), and then he just leaned over and fell asleep within minutes.  Precious boy!!!



A nurse had to change some lines out while he was resting next to me, so that woke him, and he crawled into my arms.  While Conner felt the need to face outward, to keep an eye on his surroundings and monitor who was approaching him, this state of vigilance quickly faded to peace and trust.  Soon Conner was resting contentedly, laid out across me, in total relaxation. Such precious times to treasure.



Conner continued with contentedness from that point forward.  He had a great night that was tear-free.  Today, he hasn’t had any more bouts of crying, he’s been full of smiles, laughter, and radiating joy and love to everyone who comes near him.  He’s not quite to the point of climbing out of the crib to give hugs like his usual self, but he’s so close to that display of love that it makes me giddy.  For a while there, I wondered if we’d ever got our little lovebug back! 


The specialists who’ve assessed Conner this morning have been saying things like, “Wow, this is the first time you haven’t cried when I’ve come near you!”

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And, “Oh, look at that precious smile—I’ve never seen that smile before!”

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And, “Oh my goodness, he’s so adorable!  He’s so expressive—what a cutie!”


And, “Look at you, little flirt!”


The docs, specialists, nurses, nutritionist, etc. just finished their rounds, where I feel so privileged to be included in his care plan.  Conner will be transferred to IMC today, as long as he continues to improve, which is a step in the right direction…again. :-)  They’re going to try to set up PT/OT/Speech therapies soon.  They believe Conner will be here for another week or so (always hard to predict) because lots of his labs are still really wonky, and he’s still 100% dependent upon IV fluids to stay hydrated.  Another concern is that he still might need a blood transfusion.  They are watching platelets and several other blood count labs that are low.  They said today that if he didn’t look as good as he does, they would go ahead and transfuse, based upon his numbers, but he clinically looks great, so they’re waiting and watching. 


Infectious Disease and the International Adoption Clinic are investigating some really wonky labs that indicate an underlying immunodeficiency and/or other disease/disorder.  Everyone’s stumped because there are certain numbers that might point toward certain disorders (such as AIDS and/or Leukemia), but then there are other numbers that don’t coincide that on paper mean there’s no way he could have this or that, yet some levels say yes he could.  And then there’s the possibility that everything could just be so out of whack due to his acute illness.


In order to go home, Conner needs to be able to not depend upon IV fluids to stay hydrated.  It would be nice if he could get enough nutrition via mouth, but it is a possibility to go home on IV nutrition.  They won’t automatically let him go home on IV nutrition, it will have to be a decision based upon the number of days of failed attempts to tolerate oral feeds.  Let’s just pray and claim total healing in Jesus’ name for this sweet boy, that he’ll be able to tolerate Pedialyte and oral feeds without complications so that this sweet boy can get HOME!!!


No matter how good the care is here, institutional living just isn’t the same as family life.  Once a child is stable and not requiring medical care that can’t be administered at home, there’s simply no match to the love of a family and the encouragement of siblings and parents.


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Dear Jesus,

Thank you for healing me.  Please restore me to full health quickly so I can get HOME to my family.

Love, Conner

Tuesday, August 14, 2012

Counting It All Joy

The thoughts are swirling in my mind this morning as I pray and ponder with my precious lovie resting in the hospital crib next to me.  So many things to treasure up, so many things to lift up, so many things to leave me on my knees.


I haven’t had time to update here on the blog (I’ve been trying to keep up with on-the-spot updates via Facebook because it’s quick and easy and doesn’t take me away from Conner’s side), but I do try to give a once-a-day update here if possible.


The urgent message on my heart today is regarding putting on the mind of Christ.  Not that we can BE Christ, but we can certainly ask Him to lend us His eyes, His heart, His love, His compassion, His mind.  That all aligns with Chrissie’s legacy of bossing our hearts, which today reminds us to align our hearts and thinking with the mind of Christ, not with our earthly flesh or with worldly thinking/desires.


Some people might have the opinion that if we didn’t have so many kids, we wouldn’t have to endure so many hospital stays, we wouldn’t have so many “hardships”, we wouldn’t need so many prayers, etc.  My response to such thinking is that we also wouldn’t have as many blessings (children are a blessing of the Lord), we wouldn’t experience as much love, we wouldn’t see the face of Christ as often, we wouldn’t feel His touch as deeply, we wouldn’t be stretched and matured into who He wants us to be, we wouldn’t have the opportunity to know so many amazing Jesus-loving friends around the world who continually lift us up in prayer, we wouldn’t have as many situations to practice “counting it all joy” (James 1), we wouldn’t have as many opportunities to fully seek His face, we wouldn’t have as many opportunities to rely solely upon our Jehovah Jireh (our Provider), we wouldn’t have witnessed as many miracles first-hand, we wouldn’t know Him as intimately, we wouldn’t witness the details God works out so beautifully without our even uttering a word, and we surely wouldn’t have as many opportunities to see His glory shine so brightly.


Sure, we might be more comfortable and less inconvenienced, but when our goal on this earth is to store up treasures in heaven, earthly comfort and convenience becomes less of a concern.  There are two commandments in God’s Word that were (are) more important and esteemed higher than any other of God’s commands (the greatest commandment, found in Mark 12):  (1) To love God with all your heart, soul, mind, and strength—AND— (2) to love your neighbor as yourself.  When we strive to make these commands our priority, our earthly perspective is changed.  Many of the things that were once important to us begin to fade , our focus becomes His focus, and we’re able to count trials and tribulations as joy.


With back to back to back trials and tribulations that seem to be never-ending, it’s easy to get tired and discouraged.  It’s especially important during these times that we keep our eyes on Christ, that we remember to boss our hearts to beat in sync with His and align our thoughts with His commands.  Count it all joy, storing up our treasures in heaven, focusing on what matters to the Creator of the Universe, keeping our eyes on Him always.


Yesterday (Monday) was by far Conner’s worst day yet of his being with us over the last 5 months.  He had an absolutely miserable night Sunday night and continued in the pattern of having a miserable day Monday.  Our hearts broke to watch him suffer, but I was reminded of the mind of Christ, counting it all joy that Conner is no longer a forgotten orphan, but a treasured child in a family where he’s learned to call out for his momma!!!


May God’s glory shine brightly through our trials and tribulations, as we count it all joy and boss our hearts to beat in sync with His!


Please keep praying for Conner’s healing and comfort.  His blood cultures are showing that the Salmonella in his blood are responding to the antibiotic, so that’s great news.  Conner’s pain level has been over-the-top, but it’s really hard to determine the source of the pain since Conner is non-verbal and unable to respond to our questions, nor can he point to where it hurts, etc.  We’re purely guessing based upon symptoms, but his pain greatly increased following his spinal tap.  I was thinking spinal headache, but the doctors weren’t convinced (neither was I, but it was the only documented change in his care/environment/experience).  No meds could touch the pain (morphine, versed, Benadryl, Chloral, Tylenol…all combined!), so we’ve had some really excruciating, heartbreaking hours (upon hours) here.  Fighting for our little hero who has no voice to defend himself (Proverbs 31:8) is a great privilege for me, as his momma, but it’s also a sure way to break my heart into a million tiny pieces, knowing I’m fighting my heart out for him, but not being able to “fix” everything the way I’d like to.  God holds this little cherished boy in the palm of His hand, and as my heart breaks, He holds the pieces as well, knowing His plan is to work all things for good of those who love Him and are called according to His purpose (Romans 8:28).  He is sovereign and has a greater plan in all of this.


One thing that gives me great comfort, in addition to the peace that passes understanding from our Father, is the staff at Dell Children’s Hospital.  I am so comforted to see their level of compassion and concern, weighing risks, keeping up with all of the necessary tests, staying on top of everything, with Conner’s best interest at the forefront.  When I don’t understand something, I know that they do.  They know why they are or are not doing certain things, and when I can’t figure out why, I ask, and they explain it to me.  What seems black and white isn’t at all due to Conner’s atypical presentations, plus his malnutritioned history, low platelets, wonky blood counts, wacky cultures, and acidotic state, septic state, low blood pressure, tachycardia (fast heart rate), and so many other factors all play a role in what medications he can or cannot have.  The doctors always consider my requests, answer my concerns, and share my compassion for meeting the needs of sweet Conner.  I’m truly grateful for the awesome care Conner has received here, and I look forward to bringing Conner home, where he belongs, SOON!!!!!!  I’m claiming victory through the One who has already won this battle!!!  Christ’s model of unconditional love, crazy compassion, and sacrificing ourselves for the sake of others is what keeps me going, for when I am weak, He is STRONG.  May He be glorified at all times!



Monday, August 13, 2012

Keep praying for Conner

I haven't had time to update here, but wanted to ask you all to rev up the prayers for Conner.

He's absolutely miserable. Worst night and day since his hospital admission. Tons of pain, trembling, tachycardia (fast heart rate), crying/moaning/groaning/wailing inconsolably, mottled skin with purple extremities.

It's just heartbreaking to watch Conner hurt so much and not be able to help him. He's had more morphine today than his entire 6 day stay, plus they added versed, but nothing is helping him.

CSF fluid is clear this far, but cultures are still growing. No results on blood cultures yet.

Conner will get a PICC line around 1:30pm today. Benefits outweigh risks right now.

Thanks for praying!!!!!

Sent from Lorraine's iPhone

Sunday, August 12, 2012

Salmonellosis Bacteremia

Conner was doing so well yesterday morning, but mid-afternoon, he took a nosedive. :-(

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Saturday morning, Conner woke up being playful, laughing, interacting, AND…get this…saying “MOMMA”!!!!

He is so stinkin’ adorable, I just love this kid!

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Then Conner got tired and snuggled up with Momma.  What a joy to treasure up what lay (literally) on my heart.

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Around 3PM, Conner started shaking and trembling, crying inconsolably, with mottled skin and purple hands and feet.  His symptoms were the same as what he presented Wednesday night when he was transferred from ER to the floor, the same symptoms they stated meant he was going into shock.  We had a fabulous lunch who was heading to lunch when this episode occurred, so  I asked the doctor to come examine him.  The nurse hung out to wait to see what the doctor thought about this episode, but the doctor felt that since Conner’s vitals were fine and he didn’t have fever, we’d just watch him.  So, Conner’s nurse went to lunch.

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Within 45 minutes, I could tell that Conner was BURNING up, and he hadn’t stopped shaking uncontrollably, nor had he stopped crying.  I called another nurse to take his temp.  She did, then said, “Good call, Momma, he’s got 102.9.” 

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I put him back in his crib for further examination by medical staff.  We administered Tylenol.  The fever came down to around 100, but Conner was still upset.  We administered Chloral to calm him down. 

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My immediate thoughts were that the Salmonella had entered his blood.  Conner had been fever-free for two full days prior to this, then to spike a fever of 102.9 pointed me to believe that was the case.  The IMC doctor consulted with Infectious Disease, as well as Gastroenterology, and all agreed that Conner should be treated with IV antibiotics until they get send off a new blood culture to test for bacteria.  (The first blood culture that was sent Wednesday was negative for bacteria.)  The PICC team came in to draw blood and IV antibiotics were started in the evening.  (They hadn’t originally chosen to treat Conner’s digestive Salmonella poisoning with antibiotics because it can make things worse instead of better.)

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Then Conner had another episode of what looks like shock, but we now think it’s his body’s atypical way of spiking a fever.  This time his heart rate shot above 200 (with Chloral (sedative) in his system), which is obviously not good.  Shaking/trembling all over, mottled skin, purple hands and feet, heart rate above 200, cold extremities, crying inconsolably, writhing in pain.

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Absolutely heartbreaking.


This morning the lab confirmed that Conner has Salmonella in his bloodstream, otherwise known as “Salmonellosis Bacteremia”, which can be a life-threatening condition.  The bacteria in the blood can attack organs, and often times the heart is one of the first organs it attacks.  Conner is a sick, sick boy.


Due to his low blood pressures overnight and the possible need for a PICC and/or arterial line, Conner was transferred to back to the PICU.


Please pray against the bacteria in Conner’s blood and body, bind it up in Jesus’ mighty name, and cast it out now and forever!!!  I’m believing in the healing of our Jehovah Rapha.  I’d also really like to identify the source of the Salmonella, so pray for wisdom and insight.  Infectious Disease doc is supposed to visit with me sometime today.  I’m wondering if Conner could be a carrier of Salmonella (that he would have gotten in Ukraine), then the immunizations stressed his system and allowed the Salmonella to take over his body and blood.  Just my theory.  No one else out of the 12 people living in our home is ill with this, so the likelihood that Conner picked this up at our home is just not very likely.  (And Conner hasn’t gone anywhere that we haven’t gone either, nor has he eaten anything we haven’t eaten, plus his main nutrition is Boost Kid Essentials nutrition drink.)


Thanks so much for praying!!!!!!!

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