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

Monday, May 25, 2015

Lucy's Life in an ex. fix. - month two - fancy footwear, sliding boards and more (part 3 of 3)

The biggest and most exciting news to tell Lucy's friends and family that transpired during month number two is that LUCY IS WALKING!  I was telling Lucy's orthopedic specialist, Dr. vanBosse how my Dad created a swing for Lucy.  Having already observed the "toe protector" that Pop Pop put on Lucy's ex. fix.shortly after the external fixator was put on, Dr. vB.knew we had an extremely talented and creative Pop.  At the end of the visit, he mentioned that possibly our MacGuyver could create an  orthotic that could be attached to her external fixator so as to not put any pressure on the front of Lucy's foot (Lucy has a wire inside her foot from one side of her foot through to the other and if her toes get bumped, Lucy is subjected to intense pain).  While my non-mechanical mind didn't fully understand what our dr. was explaining, I came home and re-explained to the best of my ability what was said to our Pop-Pop.  And apparently between Merle and I's gibberish, it  made total sense to Pop.   I saw the light bulb moment as Pop shook his head and said "yep, I get what he's saying, I can do that!".   Really?  Cause even as I'm faltering with my explanation, I don't understand the "how to" part one.single.iota!    And not long after this conversation..... the fancy (perhaps "rustic" is better word?) footwear you see above was crafted.  We call the black one (below) the stream lined version or her "Sunday" shoe!  

Those special crafted orthotics is what is needed to allow our girl to walk, while there is no pressure or weight put on her right foot.   Each morning we need to put on her orthotic and tighten all five wing nuts before she can even take a step and each night we remove it for a more comfortable sleeping situation.  Not only do these hand crafted orthotics allow her to walk but being mobile again has strengthened her non affected leg and most likely made it stronger then pre-surgery.  This will mean less time in physical therapy post ex. fix. rebuilding strength in her left leg.
Afraid she might fall, trip or stumble, I got out her walker(from after her spinal cord surgery last April) to lean on for for support and added security.  At our next visit with Dr. vB., he was intrigued with the new orthotic and  very happy to see her walking.  He also noted she didn't seem to really need the walker for assistance with her walking. I was quick to reply with my concerns (what if she falls, what if....) , to which he said - "she's probably more likely to  rip up and hurt your floor with the ex. fix. then hurt herself".  Skeptical, I wasn't ready to let go of the security of the little red walker that seemed a much safer and wiser option.  
But daddy.  Yep, Lucy's daddy heard each word of this same conversation and Lucy's daddy is much less apprehensive than her Mama!  (to Lucy's delight!)
I think it was less than 48 hours later the little red walker was once again returned to the shed. I was soon "ok" with her walking around the house without the aid of her walker but......  as our Daddy likes to do...he pushes it (ummm, I mean he loves seeing his children be children and play.....)

The Saturday before Mother's day, I was given the gift of a few hours of time to myself while Daddy took the kids out to a large,local pet store and to the park (free fun!)
If you'd like to see a glimpse of how a five year old in an external fixator maneuvers the sliding board at the park, you can click on the link: (clip is less than a minute long)
Let me say I'm glad that I didn't see some of these events unfold in real time ....... (but am also glad that it happened - look at her big smiles!!)  As you can see from all the pictures below, we not only "ditched the walker", we're climbing steps, sliding down the slide and having lots of "ordinary kid fun all while in an external fixator!

She's got the bend over and balance
thing down!

After enjoying the freedom enabled by walking, sliding and even twirling in place, putting Lucy back into a wheelchair was a "no go."  On the few occasions that we've needed Lucy to be in a wheelchair (because of logistics, practicality or being more safe) it's been hard to see the sad face reappear. 

 While obviously her external fixator garners many stares and unwanted attention, Lucy has done remarkably well with this.  Although sometimes her coping mechanism in such situations resembles that of the very sad little girl we met in China twenty months ago.  She will tune out, ignore or wear her flat affect face when she's in such a situation that she doesn't want attention or is possibly feeling  lonely, sad and/or perhaps frustrated by this unwanted staring and attention.  Totally understandable. 

Seeing lots of metal wrapped around and drilled into a child's leg is certainly NOT the norm. An automatic response upon first seeing this is to stare or do a double take.  Understandable and natural reaction.  The power a smile has in those times is also truly incredible! We know this truth because with the many stares our girl has received in the past two months, the encounters that are followed by smiles have definitely made the situation more comfortable. 
B.F.F.'s that are "same/same"
What we couldn't prepare for was the ripple effect her sadness and hurting heart does to her parents hearts!  And we're still working through it all and sharing a little of what we've experienced
in our journey thus far ...... 
"SMILE" it can make an awkward situation better!

Wednesday, May 20, 2015

Lucy's life in an ex. fix - month two - from the chair into the air and matching Mei Ling! (part 2 of 3)

This above picture is precious to me.
When you peer through that dining room window you see L.O.V.E. in action!

Little Miss in her wheel chair (with her custom made table  top) looking out the window to see her precious Pop Pop making her a swing!!  A special swing that accommodates a sweet, brave five year old little girl sporting an external fixator.  Because (and I quote) - "it's gonna be a long spring and she needs to be able to swing like the other kids!")
Sooo excited
Even though the very first time Lucy tried out her new swing, it was very cold - she insisted on staying out until her hands were frozen.  The next time was a beautiful spring day (compliments to  Pennsylvania's spring weather) and she was in that swing for two and one half hours!!  She loved being out of her (wheel)chair and being in the air!  Since her swing has a handy dandy small table in front of her, Mommy served her a "picnic lunch" in the swing that day!

Big brothers are great swing pushers
swinging trio

If you're B.F.F. is tiny, she can fit in the swing with you!
Blessed by a Pop Pop who uses his God given creativity and talents to bring sunshine and smiles to Lucy's days and the gift of having more freedom!

Because these pictures are too cute not to share and in the off chance you were wondering, baby Mei Ling is still wearing her ex. fix too!  And....a very special someone decided that the two ex. fix. girls needed to be "same/same!"  (thanks so much K.M.!!)


Check back for part three of this three part series soon .....

Sunday, May 17, 2015

Lucy's LIfe in an Ex. Fix - Month Two - Tuesday morning friends = happy medicine! (part 1 of 3)

At the time of this writing,  Lucy's only days short of completing her second month in the ilizarov/ ex. fix!  One more month and it's time to be rid of the cage that encompasses her right leg.
 This blog post is dedicated to some very special little people in Lucy's life .  Little ones that provided "happy medicine" for our girl each week during a long eight months of medical interventions.

Lucy's Tuesday morning friends have been such a blessing to both Lucy and (teacher) Mommy during this past school year.  Knowing that Lucy would have a lot of medical intervention over this past school year, I felt it would be important to her psyche to have at least one fun day each week to look forward to amidst the doctor appointments, hospitals stays, etc.  Time  with other "littles" having fun but in a purposeful learning type environment where she'd also  see the social nuances of American preschoolers. Putting Lucy girl into a typical preschool wasn't a fit as she would miss a lot of classroom time due to having many appointments   Last summer, God planted an idea that I prayed about and then God graciously worked out the details in bringing our little Tuesday morning group together including having some racial diversity in our little class (something so important to this Mama of a multi racial family). This group of eleven preschoolers rock!   They have been so supportive and caring of their classmate, Lucy during this school year watching each step of her medical journey.  Each and every step of Lucy's medical procedures, "Mrs. Z." explained to them in detail.  I did this so they would have an understanding of why Lucy wasn't there and why she may be at a doctor's appointment or in the hospital, possibly in a cast, or in an ex. fix..... and to not be afraid.

 ALL ten of them always sat attentively (sometimes with their mouths open) and listened and often asked questions.

 Lucy's friends enjoy their turn in pushing Lucy
even if they can't see over the wheelchair!
   Lucy's little friends have been a gift to her during this long medical journey.  Each of them seem to love Lucy and extend compassion to her and I know she loves all ten of them!

Thankful for God's provision in the gift of friendship and support for our "warrior princess"!
Check back to see part 2  to read "from chair to air"