Isaiah 43:5

Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. Isaiah 43:5

Thursday, March 26, 2015

First days of recovering at home.......

As I write this update post, it's been exactly one week since Lucy's "ex. fix. surgery"
Thank you friends for your on going prayers for Lucy Kim!  She continues on the road to recovery but now from the comfort of H-O-M-E!  After four days in the hospital (two of which were spent in pediatric intensive care) we were on our way home!  I had some concern about the one and a half hour ride home but needn't have been worried. We strategically planned to leave the hospital shortly after receiving her dose of valium for pain .  Little one slept the entire ride home.  Sleeping = no pain, no car sickness!
Lots of laying around = bed head and knotted hair

This is her cozy chair of choice
The reality of her recovery one week out from surgery is nothing short of aaahmazing.  Only God.  Today she  was given a narcotic twice and I expect that probably tomorrow we'll switch over to just Tylenol.  Four days ago we were told to rotate narcotics and administer every two hours!   Mommy also doses up with her vice:
Mommy's prescription pictured above
Lucy has figured out some satisfactory sleeping positions with that cage wrapped around her leg, only occasionally needing help with a pillow prop.
While in the intensive care unit, a nurse told me that in a few weeks she most likely will begin picking up her ex. fix by the top bar and swinging her leg where she wants it to be.  Welp, warrior girl was doing that about 5 days out of surgery!
In finding our new groove of caring for Lucy Kim, she's been very helpful.  We're learning to work as a team.
She picks up her ex. fix (by top bar) and "holds" her leg for me while I carry her.  Lucy girl takes care of the light switches and the toilet seat since I have both arms wrapped around her while transporting her.  Our toilet seat is getting new swirly designs inscribed on it,  thanks to the ex. fix. Pretty sure a plumber friend of mine will give me a good deal on a discounted new seat once we're rid of the ex. fix. :)

Sometimes their ex fixes clank together if they're too close!

I'm pretty sure this is one of her love languages!
(and yes, this was tough for big sissy to do - so it was an
act of love on her part too)

Relaxing with the B.F.F. and her bro.
It's obvious to me that Lucy's little body is battle worn,  These very early days at home, she's been content to just relax in her comfy chair and watch Thomas The Tank.   The few times she has tried to do a little something, she tires quickly and wants to be reclined back in her chair.  Not surprising at all this first week following surgery.  In fact, the reality of that is good, because extra rest/sleep has enabled her body to heal more quickly.   
However, I'm noticing that backing off the narcotic has lessened her sleeping time considerably.  We've also started seeing glimpses of frustration and anger.  Having been mobile (and even when in a cast she could ride her little car to get where she wanted to be) and now needing to depend on someone else is gonna be new territory (for all of us).
This new dance has us still on a learning curve.  When does she needs to have something N.O.W. and when does she need to W.A.I.T. (with as much patience a new five year old can muster).

On Friday, March 27th, we'll travel to Philadelphia to have Dr. vanB. remove the remaining iodine pads that have not already fallen off and will get instruction on beginning the "turning of the struts 4x/day".  This will begin the first of our weekly post op. trips to Philadelphia.  

Your continued prayers and words of encouragement are so appreciated on this long road of recovery.  We'll post updates so that you can "travel with us"!  Blessings to each of you and thanks for your support!

Wednesday, March 25, 2015

A magnanimous mail mania update........

Look at all the Lincolns!

Thank you, thank you, thank you friends for honoring Lucy Kim's 5th birthday in such a funtastical way by graciously being a mail mania player!  You have been a beautiful blessing to three little girls and three families-  Little K, Sophie and Lucy Kim.  


The blessing does not only lie in the "Lincoln loot" that was graciously received to pass on to Little K and Sweet Sophie.  The bigger blessing is witnessing orphan care - we hear your "plight"/story, we believe you were created in the image of the Almighty God and we care!  James 1:27

Dearest friends thirty eight cards and ONE THOUSAND ONE HUNDRED and THIRTY FIVE DOLLARS were collected during "mail mainia"in honor of Lucy's 5th birthday!!!  Each family (Sweet Sophie's and Little K's) will receive $567.50 toward the high costs involved in bringing a child H-O-M-E!!!

Don't know if I can express our gratitude enough.  Not only did you bless little Lucy with all the birthday cards but what a huge source of encouragement this will be to Sophie and Little K's families as they continue to work toward bringing home these treasures.
  Triple blessing.

Recent Sophie Update:
Sophie's parents are hoping to 
travel in May to bring their  3 1/2 yr. old Sophie girl home!
Recent picture of Sophie

Recent Little K Update:
Little K's family requested a medical expediate to get
their girl home sooner for medical care.  Praise God
yesterday (3/24/15) - the expediate was granted.
An earlier picture of "Little K"

Always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.  Eph. 5:20


Saturday, March 21, 2015

Post Op. Days One and Two (March 19 -20, 2015) - "The Lord is with you mighty warrior!" (Judges 6:12b)

Days one and two of recovery after external fixator (ilizarov) surgery were full of ups and downs. Varying kinds of strong medication was given every two hours.  The goal is keeping the pain level low or almost none existent.
*Any picture can be enlarged by clicking on it*
Daddy's hand is a source of security and comfort
Physical therapy department made a few visits to Lucy's room and one of those visits entailed measuring her for a wheelchair.   The seat portion needs to be deep enough that her little leg that supports the ex. fix. can be resting on the seat.  

As scheduled, on Friday Lucy had the white gauze wrapping from her ex. fix. removed.  I've been asked how she's dealing with seeing the ex. fix.  All in all - "good" would be my reply.  I really believe that baby doll Mei Ling softened the blow of a very daunting procedure.

Pop-Pop sure did a great job with Mei Ling's ex. fix.!   The nurses and doctors here at Shriner's have loved seeing Mei Ling and one  of Lucy's nurses took Mei Ling and introduced her to some of the other nurses on the floor.  While the nurses are very accustomed to seeing and helping children in ilizerovs none have seen a doll with an ex. fix!  But then again there probably aren't too many MacGuyver Pop Pop's out there!
Starting the unveiling
(removing the gauze)
Taking a good look

Not sure she likes what she sees

Debating if she's ok with this contraption or not
Right now the movement of being put into a wheelchair or onto a bedside potty chair seems to trigger pain.  It then takes a long time for Lucy to get comfortable again after being put back into her bed.
 At lunchtime on Friday, Lucy was moved from pediatric intensive care to a regular post surgery floor.  I think maybe years ago they may have called the room she's in on the fifth floor a ward or something.  There are four beds and a crib in this room!  However, Lucy is the only patient in the room at this time.
We're ready to move onto day three of this recovery.  Lucy has been constantly telling us she wants to go home!
Upclose look at Lucy's external fixator with
connected "thinger ma bob"
Three months Mom?
Dear Dr. vanBosse stopped in for a second time to see Lucy after a long full day in clinic on Friday (8:00 p.m.!) - Lucy asked Dr. V if he wanted to see her ex.fix., he said, "Sure" - he exclaimed - "Oh Wow" to which she replied "I don't like it!".  Dr. vanB. then said "oh sorry, I got the best one I could"
Lucy and Dr. vB - taken in Oct. 2014
In reality we don't think Lucy understands that Dr.vB put on the ex. fix.  In fact I'm not sure she has thought it through that while sleeping someone actually is working over her body (and I'm cool with that innocence!) and things don't magically happen while in surgery.

The Lord is with you mighty warrior!
Judges 6:12(b)

Friday, March 20, 2015

Ex. Fix. surgery and "the dance" - March 18, 2015

Different hospital, different gown, different surgery...... same waiting game
On Wednesday, March 18th we were scheduled to check in with Lucy at Shriner Hospital for Children at 9:00 a.m.  Surgery was tentatively scheduled for 11 a.m.   After answering the same series of questions at about three different stations (no we have not been out of the country in the past 3 weeks, no she has not been sick, no she does not have a latex allergy, etc.) Lucy was given her "happy juice" (aka versed) and headed for the operating room as scheduled at 11 a.m.
pre-surgery pics with daddy bear
The surgery took just over four hours and at 3:30 we met Dr. vanBosse in the parents waiting room on the 7th floor.  He reported that the surgery went very well, the ilizarov (external fixator) was  constructed (much like an erector set!) and put on Lucy' leg from thigh to foot.  He also put a wire through the bottom of her foot to maintain the corrected talus position.
The anesthesiologist also came out to chat with us after surgery (a first in her four surgeries).  She explained to us that while in surgery she tried several times to put in a spinal epidural (that was pre-planned for pain control).  However, because of the scar tissue from her April 2014 spinal cord surgery she was unable to put in the epidural, meaning scar tissue prevented this procedure.    This news meant that pain could be trickier to control and controlling pain after an invasive surgery such as this is a key component in her journey to healing and recovery.  A pediatric doctor with over thirty years experience in pediatric pain management was the doctor working in the PICU this week!  God is good.
Unlike the other surgeries, we did not see our girl in recovery (?) instead we met her in her pediatric intensive care room.  The nurse and doctor both let me know that she was asking for her Mama (that statement was met with very mixed emotions- of course elated she wanted me and was looking for me but also a bit agitated//upset that I wasn't beside her when she woke) and Lucy told them she was scared!  I did obsess on those comments a bit and my dear friend who spent the waiting time during surgery with us told me that most likely she won't have memory of it.  I resigned to hoping that she was speaking truth.
Ahhh a cool wash cloth

Lucy sweats. A lot.  No footed blanket sleeper pj's for this girl - she sleeps in a tank top and shorts all.winter.long.  I've become accustomed to her off kilter thermostat but was still a bit shocked to hear from the nurse that she "sweated out" both of her IV sites?!  Wha??  Apparently she was wringing wet with sweat and both IV sites dislodged!  So.... our brave warrior had to have a new IV site put in after surgery.  I think most likely this was part of the reason she was scared.
recovery starts in PICU

Prayers and words of encouragement from "Aunt A. & Uncle D."
We didn't see much of Lucy's eyes until about 11 p.m.  She was getting morphine every few hours along with other big gun meds like Valium, and oxycodeine. This is when we begin the  DANCE!   Figuring out the steps -- how much, how often, dealing with angry and easily triggered emotions from a little 38 pound body pumped full of potent chemicals   Throw in lactulose to keep bowels moving (which then  ended up causing severe abdominal pain and run away bowel issues ) and you see why the metaphorical dance steps can become tricky!  We're grateful for a PICU doctor with lots of experience in helping with the choreography of this dance!
Depending what time you may have checked in with us would have determined  the answer to "how we're doing". Truth be told, I really dislike this part of the journey.  It's hard.  There's a lot of pain.  A lot of raw emotions (from patient and caregivers) and little sleep.  After Lucy's spinal surgery we did a similar dance and  we were quickly reminded that what things look like at the moment may not be what things will look like in a few hours.  Thus the road of recovery and healing after invasive surgeries.

Thursday, March 19, 2015

Celebrating Birthday #5!

 Dear Faithful and Loving Friends of Lucy Kim,

Words cannot adequately express our gratitude, joy and surprise in having so many of you join us in honoring our girl's 5th birthday.  Oh how fun it was to receive so many cards and donations that will , help her two little friends still in orphanages in China.  I hope to share with you the total number of cards and  donations raised next week.   I've had a few people tell me that they have a "card in the mail" so next week when I'm back on the home front, I will be excited to re-tally and let you know in  a quick blog post the total so that you can praise our Heavenly Father with us!
Birthday girl with a bucket of lollipops!
On St. Patrick's Day, Lucy joined the 5 year old team!  Her birthday fell on a Tuesday this year so we had the fun of celebrating her special day with her ten little preschool friends!

Celebrating with friends
After a birthday meal of Chinese dumplings, lo mein and chicken, 

 we packed up the mini van and headed for the Ronald McDonald House in Philadelphia.  Five minutes after leaving our driveway party girl was out like a light.
While I couldn't see her eyes through her shades,
it was quiet which told me she was asleep!
When we arrived at the Ronald McDonald House, we were warmly greeted and asked if  it would be ok to wait to do the check in paperwork.  The three of us were then guided to the dining room area where balloons, party blowers, ice cream and a tinker bell fairy birthday cake decorated with "Happy 5th Birthday Lucy" awaited!   Apparently  some of  guests and employees were waiting on the birthday girl's arrival to help celebrate her special day!

After a long fun partying with friends day, it was time to head up to our room and get settled in as tomorrow was going to also be long but vastly different than a party day.......

Wednesday, March 11, 2015

Making room for a new room mate and meeting Mei Ling (video snippets included)

Our two sweet princess'
Sweet Sadie ALWAYS brings a smile to Lucy's face
As we get increasingly closer to surgery day (March 18th), we  have been able to check things off the "to do" list in preparation of Lucy's surgery and the lifestyle changes we'll need to adapt to for a few months.  Recently Daddy and Mommy rearranged their bedroom, making room for their little room mate.  A cute little toddler bed now resides beside our bed.  Lucy will be a few feet from Mama's side of the bed!  Our bedroom is on the first floor and it seemed logical to "move her in" as opposed to carrying her up and down the steps to her second floor bedroom; especially for the first several weeks while we are learning our new groove.

We continue to try and prepare Lucy for her upcoming surgery by having casual conversations about her "ex fix", her new wheelchair, teaching her that Jesus is with us all the time and everywhere, and teaching her Bible verses.
We are praying that Jesus will fill our girl with the peace spoken about in scriptures "peace that passes understanding."

On a Monday evening a little more than a week before surgery when the house was quite (a RARE occasion) with just Mommy, Daddy and Lucy girl at home, we decided that it was a good time for Lucy to meet baby Mei Ling.  If you've read earlier posts, you'll remember that little Mei Ling has the same leg anomaly as Lucy Kim.  (Mei Ling's undergone surgery and is already recovering with her ex. fix.)  Daddy was able to capture Lucy's initial reaction to seeing Mei LIng on tape and also a short snippet of Lucy explaining to Mei Ling why she needs an ex fix.  We thought you might enjoy hearing her voice and her English after being home just 18 months!  (click links below)

Please pray with us that Lucy will stay healthy leading up to surgery, that a peace will encompass our girl before, during and after surgery, that no complications or infections will arise during surgery or recovery, pain is able to be well managed, wisdom for caretakers, and for both stamina and rest for the journey.  HE is faithful!
As a quick video bonus - enjoy a one minute video of Lucy reciting (with help) some of the verses she's memorized.

Image result for the lord is with you mighty warrior
Judges 6:12(b) - one of the verses
Lucy's memorized and being reminded of daily!