Report on our visit to the Pogradec Prosthetics Clinic

Thanks for your patience in getting this report published!  Between recovery from a long day of travel, then sporadic internet, well, here goes.

We found the Light of Hope Center without too much difficulty on Wednesday and immediately felt welcome and at home.

Ellie asked if this toy box was a place for "kids with no legs" to play, but immediately jumped in anyway.

We met the staff.  Below is the general manager, an Albanian fellow named Mandi.  He was eager to give us a tour and introduce us to the ministries and programs of their German-based foundation.

It's amazing how they modified a traditional residential space and made it look not too different from the space we know at Shriners in Lexington!

In one space, they were hosting their day program for adults with cognitive disabilities.  These folks have Downs Syndrome.  They start each morning with scripture reading and singing.  Then they work on crafts.

This gentleman was pleased to show us some of the things he has made.

Across the street they have opened a coffee shop with limited hours that employs some of these individuals to integrate them in to the public.  This is extremely counter-cultural!

Then it was back to business!  Daniel, the prosthetist, immediately noted that Reni had long outgrown his almost-three-year-old pair of tall legs.

He pulled out a pair of kids knee joints that he had on hand, previously used.  In the States, it's not legal to utilize 're-cycled' prosthetic components (don't ask me why -- probably something related to liability), but when a silicone liner alone costs around $700, why not try to save money where you can?  Especially when it comes to children, they outgrow their prosthetics before most of the parts have a chance to wear out.

In our case, our medical insurance draws from a pool that all missionaries pay into, so we try to be conscientious about our withdrawels and not spend frivolously.  Though Reni was/is a patient at Shriners, since we have insurance and the prosthetics department on their premises is actually an outside contractor, we still technically pay for Reni's prosthetics.  Shriners does cover the costs of Physician consultations and in-house X-rays. By getting his next pair of legs made here in Albania, not only will we save the time and expense of traveling to the States, but we might also be able to get him a pair of useable prosthetics for a fraction of the cost of the same legs in the States.

Here's Nathan showing Reni how the knee joint will allow him to gain new movement.

The contents of Reni's "leg bag", plus the 'new legs' we'll be harvesting parts from.

Before we left, Daniel and his assistant were casting Reni for his new sockets!  We'll go back to Pogradec the first week of August for the next step!  (Our boy was feeling modest so Mommy respected and changed her angle -- you can see one of his legs peeking out from behind the curtain).

Thank you to all who prayed for us regarding this not-insignificant matter.  We can hardly believe this is a possibility within the borders of Albania.

A blink of the eye

It's amazing how seamlessly the kids have adjusted to our new home in the village.  

Just bring his cars and his legos, and he's a happy camper.

I'm posting this update from Pogradec, Albania.  Tomorrow we meet with the German prosthetics clinic in this town.  I don't know what to expect from this consultation, to be honest.  By visiting these folks, it doesn't mean we are unhappy with the service we have received at Shriners.  But the truth is, I think there will be a day when we need closer access to a prosthetist than a plane ride across an ocean.  Someone to repair a broken joint.  Someone to adjust a fitting to be more comfortable.

Pogradec is about a 3 hour drive from Vlashaj.  Or, about the length of time it would take us to drive to Indianapolis from Lexington or Peoria.  

But compared with a trip to the States, it's blink of the eye.

And there's nothing we wouldn't do for this guy!

Test Run in the New Stubbies

I'm up to my eyeballs in photos to cull and edit from the past 2+ weeks.  In the mean time, enjoy this little video of Reni trying out his new stubbies!  (It's only 18 seconds long, but gives you the idea of his mobility in them). This was at the rough fit on Monday.  Wednesday morning we were able to pick up the finished legs as we left Kentucky, on our way up to Indiana!  Check out my Instagram feed in the right hand margin for a sneak peak at the cool "Cars" design Chris (the prosthetist) applied!  According to Reni, they're like "tattoos".

I can't wait to see how this impacts his ability to run around outside, on pavement, gravel, mulch and other hard or bumpy surfaces!  YAY!!!

Casting for Reni's Stubbies

A few weeks ago while we were down in Lexington, Reni was cast for his first set of 'stubbies'.  His current set of prosthetics (just like his first set) are full length legs, but without articulating knee joints.  They make him taller (which he likes) yet it is difficult for Reni to be a typically active three year old; one who likes to climb up and down from furniture, go up and down the stairs, get and up and down quickly from the floor, and navigate playground equipment.  You and I with healthy knees use them thousands of times per day and probably don't even think about it.  But for Reni, it's not that different than walking around on stilts, and when he falls, I always gasp and wait to make sure he hasn't gotten hurt.  He's tough, but it doesn't seem out of the question that in the right circumstances, he could fall and break a wrist or arm.

We could invest in legs with knee joints as he's bordering that developmental age where they begin to transition BAK (bilateral above knee amputee) children to knee joints, but we've been told they would require intensive physical therapy to learn, not to mention, we think he would still need a set of stubbies for around the house.  Soooo, we opted to just go for stubbies right now and wait another  year or so on 'legs with knees.'  Given the cost, it's not exactly something you buy two of at the same time.

Complicating matters is Reni's extra tissue on his left leg.  We're opting not to remove it surgically because it has bone, muscles, and some supporting ligaments.  We're hopeful it might be useful for a robotic knee when he's fully grown.  The reason we say it's complicated is that Chris, the prosthetist, isn't designing a simple socket to fit over a stub (like he can do for Reni's right leg).  It was interesting to watch and hear him hash out the design while we discussed how we wanted these stubbies to function for Reni.

The first step in casting is to roll on the silicone liner sleeve and wrap it with saran wrap to keep it clean.  Then a thin sock is pulled on over the plastic wrap.

During the entire casting process, Reni was as quiet as I've ever, ever seen him.  Chris wrapped his legs in a quick-setting plaster cast.  And marked it with a special pencil to note the front/center part of the socket.

After it dried, he slipped it off and repeated the process for the other leg!

About thirty minutes later we were all done and so we stopped by for our traditional photo with Mike outside the therapy room.  Reni is mimicking his pose!

I can't really express how excited we are to finally be getting these stubbies.  You might recall how two summers ago Reni had devised his own "shoes", slipping plastic drinking cups over his stumps to protect them on concrete and rocks.  Alas, he's gotten to heavy for those, but these will be the 'real' deal and give him way more comfort and freedom than those cups ever could provide! 

What would you have done?

Sunday afternoon we visited a fun new park near Pam and Dave's home. Reni had a blast because unlike most playgrounds which use prickly mulch, this park boasted that spongy feaux asphalt which allowed him to fly around the place independently on his little stubs.

I wanted to try to get some footage of his "sprinting" so you can see how speedy our little man is, but caught something else entirely (he had blown by me by the time I got the video recording).

I saw him make his way to the "spiderweb" and overheard a little interaction unfold.

I heard a boy say to Reni, "Wanna be my friend?"

Reni doesn't immediately agree, hedging his reply by first asking the all-important question: "Do you have [toy] cars at your house?" 

I see the boy touch Reni's stubby leg, then sweetly put a hand on his back.

Reni for some reason thinks he can crawl through this boy and his friend or something and as Nathan tells him to wait, the boy's grandmother comes over and scolds her grandson, saying something like, "I told you not to bother the little kids", then as her grandson says, "That little boy has no le---" She tries to silence him with a loud "SHSH!!!" and yanks him off the equipment and away from Reni.

I keep the camera running on Reni, as if to mask the grandmother's embarrassment, pretending I hadn't heard what was said.

It wasn't until later, after letting the interaction replay in my mind, that I realized how much I failed in my lack of response. By then it was too late.

First of all, this young boy did nothing wrong. If anything, he interacted better with Reni than most new people he's met in a setting like this. He asked to be Reni's friend, then he touched him kindly.

My lack of response was what was wrong. The last thing I want is people yanking their children away from Reni as if he's got a contagious disease. I've always said I appreciate how children are usually the best at acknowledging Reni's differences -- they're straightforward with their questions and unlike adults, they don't whisper or look away as if their vision has a huge blind spot.

But before anyone feels like I'm judging them, let me tell you, I've been on the other side. As the parent of young children (who rarely have 'filters' over what comes out of their mouths), I've done my share of 'shush-ing".  My advice? If you see your child curious about another child with physical differences, I suggest you be straightforward and approach the child's parent with a comment like, "My daughter noticed that your son doesn't have any legs.  She wants to know how it happened, if that's not too personal a question to ask."  I can't guarantee that it will always be received graciously, but if they're anything like our family, asking questions is preferable over the shh, the stare, or avoidance. We like meeting new people and making friends  If you want to know how to ask wrongly, read this.

If I could have done it over again, I would have put the camera down and gone over to the grandmother to say that her grandson hadn't done anything wrong, but express that he and Reni had been talking and her grandson wasn't preventing Reni from enjoying the equipment.

What would you have done?

We're learning as we go, but Reni's turning four this summer, and getting more socially aware and I'm thinking about this more. We're about to move to a country that could medal in the art of winning the 'stare-down.' (Read Sarah's description from an American perspective here).  I'm also in a FB group for amputees and regularly read comments like "I'm used to being stared at."  Ouch. We know we can't protect Reni from this reality, but we want to equip him as best we can to have confidence.  It's going to be refining for his character (and mine).  Anyway, I'm not beating myself up, but want to take this as an important lesson in handling situations like this and offer a word or two if you might be the parent on the other side.  I understand.

Check out the video below to see the situation yourself.  I had nothing to do with the frame which was chosen as the thumbnail pic, but I love it.  That encourages my heart more than anything.


 

Incidentally, Reni climbed this several more times, getting faster and faster each time and mastering it completely independently.

P.S.  I'm not one who feels like I need to 'educate' people. We actually love watching the faces of others when they see Reni navigate so well because they're usually smiling. And once kids start talking to Reni, within minutes it's usually no big deal -- they see him as a kid much like them. It was just because I actually captured this one incident on video that I even wrote about the subject matter at all. As a post script, I should add that this winter Reni was going to have the opportunity to meet a little adoptee who was missing part of her right arm, and then later a little boy missing part of his left leg. In both cases he expressed fear, but quickly over came it upon meeting them. When it comes down to it, I think it's a matter of overcoming the fear of bodily differences to get to know the person inside the body.

P.S. #2:  Here is a link to another mom's thoughts on "Reclaiming the Playground".

Bits and Pieces -- Camera Phone Dump





I love how my Scottish (that's properly pronounced, Scaw-ish) friends say "bits and pieces" instead of the way we say "stuff" or "things".  It has a more refined sound, don't you think?  Besides, if I titled this post, "Miscellanea", I think you'd yawn and click on the big red "X" in the corner of your window.

 

I have a bunch of little items to share that won't get their own post, so sadly, they're getting lumped altogether because WE ARE LEAVING TOWN IN SIX DAYS! 

 

While I was in Albania, Nathan sent me this photo of the kids -- Ellie's idea of heaven: sitting on Nonna's lap reading books!

 

The next photo gave me a big lump in my throat:

Reni, sedated, for an MRI of his left leg.  Remember the post where we thought Reni might have to have surgery before we left for Albania?  The surgeon wanted another peak at what might be developing below Reni's femur and discovered a knee cap, ligaments, tendons, and two bones!  At the least, we're hopeful that there might be enough in the future to trigger a robotic knee.  A follow-up consultation in Lexington is scheduled for May...

 

Below -- two kiddos up way past their bedtime to see Mom, Gigi, Gyshe, and Aunt Hannah step off the plane!

 

As close as any child of ours will ever come to catching a fish.  Thanks, Bass Pro!  (Where our family goes for cheap fun -- we just browse!).

I laughed when I saw this because yes, Ellie has the gift of making friends in a heartbeat.  Again, another pic while I was overseas...

In January we visited our friends, the Rascos, in Boone.  Arthur had created a 14-minute video of their adoption story which was viewed at a film festival where a distribution company requested a slightly longer version.  That's now available for purchase or download here: https://www.visionvideo.com/detail.taf?_function=detail&a_product_id=36749&refurl=/search_by_ncs.taf?%5Ffunction%3Dnew%26name%3DNew%2520Releases

Before we left their home, they gave us a copy which we were able to watch a few days later with some friends who themselves had completed two Russian adoptions.  Grab a kleenex!  Adoption stories get me every time!

Speaking of adoption, I've got a new blog I'm hooked on.  It's called "Unleash the Sheep".  I see you raising your brow quizzically.  Maybe like me you thought it had something to do with the fact that the author and her husband are vets, but no.  It's better than that. 

I met Sarah online in November.  She and her husband discovered their soon-to-be son, Zefi (isn't THAT a cool name?), on a waiting child list.  Zefi was from this little country called Albania, in a town called Elbasan.  After some internet searching for Elbasan Albania adoption, Sarah stumbled onto our little blog and was shocked to find a photo on here of Zefi!!  We've exchanged a number of e-mails, with me trying to share about what they could expect from their time in Elbasan, where to stay, places to eat, etc., with me eventually connecting them to our friend, Kerri, Elbasan's best hostess and emissary.

ANYWAY, Sarah started blogging shortly before their departure a few weeks ago.  Like you, I was trying to understand the meaning behind the name of their blog until I read the back story.  In preparation for their travel, Sarah had purchased an English to Albanian language CD.  Her young kids were listening to the CD and started repeating "unleash the sheep!"  Puzzled, she skipped back and discovered that what they heard as "unleash the sheep" was really "English and Albanian" or Anglisht dhe Shqip (with the proper accent, it sounds something like "ongleesht the sheep").

Perhaps only someone who has ever been to Albania and heard the Albanian accent can fully appreciate the humor in that, but I thought it was brilliant, on so many levels.  As Sarah wrote, imagine what would happen if all of Jesus' sheep were unleashed and fulfilling His purposes in the world?

Read the Waller family's unfolding adventure as they endeavor to bring Zefi home.  I'm sure they'd appreciate your prayers as they go to court on Tuesday, as well as they try to overcome some difficulty in getting Zef's visa to come home.

Well, I had more to share, but it's going to have to wait for another post!  While I'd love to share some interesting stuff I've been reading, what we are most anxious to post is an idea we need to develop a bit more first. Hint: it's related to building our prayer team,or AKA Team Epaphras! (puzzled?  read our March newsletter here).  Stay tuned!

The "A" Word

All boy.  Our boy. So loud, yet so sweet.  Big on hugs and kisses with Mom and Dad.  We can't imagine life without him.

Since he can't pump his legs to swing, he cleverly figured out how to propel himself side-to-side.

While in Kentucky we had Reni's bi-annual appointment at Shriners.  We had a serious discussion about amputation surgery for the first time.  Our hopes of a workable knee joint on his left leg seem to be fading, and in light of our upcoming move overseas, the timing of this discussion was pretty important.

Obviously, it's not an easy matter to contemplate.  But the pros seem to be outweighing the cons.  And to do nothing will only slow down his mobility. (Perhaps I'll get into the technical stuff in another post, but suffice it to say, after our discussion with the folks at Shriners, Nathan and I were on the same page, which isn't always the case when it comes to matters of the kids).

So as you pray for our family, here's something else you can remember on our behalf.  We have questions about when this can and should be done in between our homeland ministry travels.

The silly thing in the whole matter is dealing with the loss of a little part of him.  I know, it sounds crazy but he's been made uniquely and we've fallen in love with every little bit of him.  Even his little 'foot' and little 'toe'.

Last day of therapy!

21 months ago we started working with our wonderful physical therapist, Lee Ann, through First Steps.  Last Wednesday we finished therapy (for now -- additional therapy may be needed when Reni transitions to more sophisticated prosthesis).  Reni LOVES it when Ms. Lee Ann comes because she has the most amazing toys!  With those toys, she's able to guide Reni through exercises and show us practical ways to get him to work on new skills without it feeling like 'work.'

Like walking toys from one side of the room to the other...

... which requires one to stop forward motion, lean over and pick items up off the floor, rise back up again...

... and carry items using two hands...

... stop, and turn around!

Occasionally we need to take a break because it is hard work!

And given that Reni has mastered everything on his goals list, therapy came to an end!  We are so grateful for special folks that God has placed in our path to help our children reach their potential!  Thank you, Ms. Lee Ann!  We'll miss you bunches!