Who do you love?

Since our last blog update Sam had another surgery and we received an important third opinion regarding back and hip surgery. Sam is doing very well and continues to be an amazing trooper though all of this. Thankfully, he has grown quite comfortable in Dr's offices. More often than not, Sam will tell the Dr that he or she "did a good job". He recently surprised two docs by handing a "Super" sticker to one and a lollipop to another.

Last week we traveled to Atlanta to see Dr Dennis Devito for a third opinion regarding Sam's hips and back. The first two Drs recommendations were vastly different (re type of surgery, time frame and prognosis.) Dr Devito (like one of the other Drs) is optimistic re Sam's prognosis but recommended a completely different type of hip surgery than either of the other two Drs. He also recommended a different time frame for both surgeries----that Sam have hip surgery FIRST, possibly this fall, that we wait one to three years for back surgery.

So now we essentially have three very different plans about how to proceed, but we feel most comfortable with Dr Devito (the most recent Dr in ALT) and his experience so that is whose plan/recommendations we will follow.

We know that this is all in the hand's of our gracious God and that knowledge USUALLY provides us a peace about all of Sam's medical needs.....

God has sustained Sam, against ALL odds so far....At birth no one expected him to live much less thrive, sing, pass out "Super" stickers, or practice for basketball games with Jesus. (He recently asked does Jesus play basketball?---Does anyone know???)

On a totally different note, Chip was very proud today when Sam sang and danced to the George Thorogood tune, "Who Do You Love? "

Once again, I close with a sincere thank you for your prayers and support.

Love,
Kristin

except maybe the day you are circumcised

Monday Sam had an out patient surgery -circumcision and two other procedures to help stop urinary track infections. He did really well except, like most kids, the anesthesia made him sick most of the day. We discovered that he DOES have sensation that low...a very good thing--- except maybe the day you're circumcised. However, he was just a champ through it all. Last night, a little high from pain meds, he said, "I am not sick anymore; my Pempee does not hurt; I am SO Happy!" (Chip would want me to note that "Pempee" is Sam's word choice not his...) He has an MRI with sedation this month and another outpatient surgery in four weeks. And we are scheduled to go to Duke on 10 SEPT to get a third opinion re back surgery... So we are busy but manage to have a ton of fun through it all. Life is good. More than that--God is good...K

Ortho visit

Yesterday we went to see another orthopedic surgeon. He was far more encouraging than the last one we saw and recommended that we have spinal surgery sooner rather than later, possibly even before we leave in December. This surgeon is recommending a slightly different type of spinal surgery and and a radically different hip surgery. He said that the spinal surgery is a very serious but that "his odds are far better" than what we were originally told. So we've been give two different courses of action, two different prognoses... We have much thinking and praying to do...

Thankfully Sam is very comfortable with Dr's visits these days. He constantly entertains the medical staff. Yesterday he began giving the X-ray technicians instruction about how high the X-ray machine should be positioned. He cracked everyone in the room up and came away with a handful of stickers.

Sam is a source of constant mirth for us also ....Last week we were reviewing the Bible story of the previous night- Joshua and the Battle of Jerico. (For those of you who are not familiar- At God's instruction, Joshua and the Israelite Army marched around the walls, blew their horns and the walls of the fortified city, Jerico, came down.) Well in Sam's rendition, Joshua "huffed and he puffed and he BLEW the house down." A story now referred to as "Joshua and the Three Little Pigs"... We have a little work ahead of us...

As always -thank you for your continued love, prayers and support...K

Pictures from the beach and 4th of July

Pictures from our recent trip across the South.














Sam's first 4th of July Celebration and his first trip to the beach. He loved it all.

What is this truth???

Hello all. It's been a while since our last update and much has transpired.

First of all, we received some fantastic news from our last visit to the neurosurgeon. Sam does not have hydrocephalus nor does he have Arnold-Chiari malformation, two issues almost always present with severe Spina Bifida. We are beginning to get accustomed to seeing Dr's scratch their heads in amazement at our little boy. Also while this particular Neuro -surgeon does not perform the spinal surgery that Sam will require, he did not feel that Sam's prognosis for this surgery was as bad as we were previously told. Praise God !!!

The last month of school Sam began to attend for a couple hours each day and he loved it. His teacher, the other children , EVERYONE at his school were fantastic. It was a positive experience for him. Sam is a little sponge. He is even beginning to read.

We are currently visiting Chip's family in Mississippi. As we were discussing our trip here and the follow-on trip to the beach, Sam asked me, "Mama, will we have 'few' at Nana's house?" I asked him several times what he meant because I didn't understand. Finally in frustration Sam spelled it out for me, "F-O-O-D---fewD". So when he can't correctly pronounce things, he just spells them out for us!

He then went on to ask if we would have food at every stop we would make along the way --Lisa's house, Mama Peggy's house, at the beach...Sam seems so happy and secure in familiar environments that we were a little surprised that he still has these security questions. We forget that he has only been home four and a half months.

On the 10th of June, Sam was baptised in Hattiesburg, Mississippi, by David Jussely, the minister who married us. It was a special day and a wonderful opportunity to reflect upon God's faithfulness to us.

And just so you don't think we have a perfect child-- Sam had another first the other day...He told us a lie. I said, "SAM! You just told me a LIE!!!"

And he said, "What is this lie?" (With his best confused-little-Lithuanian-I-don't-speak-English-look. )

"It is what you just told me. It was NOT the truth !!!"

"What is this truth?"

Rest assured Sam now has a good working definition of truth and lie!

Thank you all for your continued prayers and for being part of our story.

Love , K

Two blogs in one day...

Two blogs in one day...figured I would also add a few pics..Enjoy..K

"up, up, up...."

We've had a fantastic weekend here. It began yesterday at the PX. We were in line at the customer service counter behind another six year old boy and his mother. The other mother and I were making small talk when she asked Sam how old Sam was. I deferred to him. He replied, "Six" (held up six fingers). Then he looked at the lady and matter-of-factly told her that Sam, Mama and Daddy were going "up, up, up" to Jesus and that his legs would be "good". He made a thumbs up sign and then asked me if we could go to the toy department next.

As if that were not enough, today on the way to church he said "Mama, Daddy, Sam-- go up, up, up to heaven. See Jesus. Sam's legs good." (Again thumbs up sign. ) "Running, ice skating, swimming; All those things. No wheelchair. No wagon. No Bear chair. " (Used hands to emphasize the NO! in all these things..) "Standing, standing, standing and singing, singing, singing... lots of singing..."

Of course we pray and read Bible stories with Sam. We have talked a little about heaven but (to our shame) we haven't explained it to him like this. Honestly the most specific thing we have told him is that one day we will see Jesus and we'll get to be with him forever in heaven. We were shocked at his understanding and his ability to draw out personal applications for heaven...

So if you are curious or have any questions about heaven come talk to our little boy. He can explain it better than anyone else I know.

We thank you for your continued prayers and support.

Love,
K

Not much new to report this week. The Neuro visit went as expected-- nothing new but Sam continues to amaze the professionals. ("Medically, he shouldn't be able to do the things he does"...) At home he continues to delight his parents. He just has a pleasant disposition that makes parenting a real joy 99% of the time. I will add a few pics this week but will drop the blog to once every few weeks, mostly just to post pics for you distant relatives and friends.
Love,
K

Joy

Home a month and our house is truly full of joy.

I'm sure the "Are you guy's crazy?" thought crossed many of your minds when we first told you about Sam and his medical issues. To be honest it crossed our minds once or twice - especially as we were preparing to leave for Lithuania. However, after our first meeting with him we haven't looked back. I can truly say we have no regrets. I'm sure every parent can relate.

We are at times sad when we think about the potential pain and heartache that lie ahead. But it's kind of hard to stay down too long around Sam . His joy is infectious.

Just this week Sam seemed to wrap his brain and heart around the concept that he is here to stay. Several times he smiled and said, "like house", "like room", "like a lot"....and my favorite-- "Mama, Daddy, and Sam forever and ever and ever". Another favorite, just out of the blue- he will sometimes say, "I so happy, I SO happy!" And he is--- the boy wakes up happy and goes to bed happy. We're having a lot of fun in the Huey house these days..

Next week we have an appointment with the Neuro surgeon here in Columbia. We don't necessarily expect a different prognosis but will use the opportunity to obtain a second opinion and to ask questions.

Thank you again for all your support..K

PS I will post some pics tomorrow- out of time tonight..

Pictures and the DR visit

Finally I have gotten my computer to read our camera memory card, so I will post pics more frequently again.

Sam continues to delight us every single day. He has such and easy, happy disposition. We still pinch ourselves--Is this wonderful little boy really ours???

Every day he dreams up several new projects for us to constuct out of cardboard, construction paper and tape... a fire truck, a firefighter uniform- (pictured), musical instruments, Spiderman costume, all sorts of animal masks, an x-ray machine...I think a motorcycle is on our agenda today.

On a dissapointing note, Wednesday we had an appointment with the Orthopedic clinic at Medical College of Georgia. All the Drs were amazed that Sam (in person) was the same child whose X-rays they had reviewed. They marveled at his intellect and at Sam in general. We had been hoping for a surgical fix for Sam's hips because they do not bend very much. But this is not possible. And Sam's lack of hip bending places more pressure on is back. The surgery that he will likely need for his back is very risky so we will postpone that as long as possible. We also learned the extent to which Sam is susceptable to kidney/bladder infections and the possibility of kidney failure - overall a very dissapointing visit..

Sam was an absolute trooper the entire time. His phrase of the day was ' "No crying in baseball" or sometimes, "No baseball crying." This phrase was accompanied by his exaggerated arm motions to emphasize the "NO" in "No crying"....He continues to charm everyone with whom he comes in contact.

Sam introduced himself to one professional as Benjamin (his friend) Martynas Huey...

So next on the agenda are Neurology and Urolgy appointments. Tricare, our insurance company, made a mistake and now we have to wait several more weeks for these appointments. This is especially dissapointing as the urology appointment is critical. I can forsee many more Tricare battles.

We will be ordering a newwheelchair that is custom molded to fit Sam's back and his hips. I can not stress enough how important it is that we get this right. Please pray that God directs us to a vendor that can make a molded seat and back rest that works for Sam. This is very expensive and we may only have one shot to get it right....

SO re prayer requests-

please pray for the seating system,

for a quick urology appointment,

but most of all pray for Sam's little heart --that he will come to know Jesus sooner rather than later--

Also please continue to pray that his father and I are good stewards of this precious gift that is Sam...

blessings,

Kristin

Home two weeks...

Sam continues to delight, frustrate, scare and amaze us.

We've been home two weeks now and we are definitely getting into a groove. We usually spend the mornings working on home school activities and have Dr appointments or play time in the afternoons.

On Monday our washing machine was repaired. This single event greatly (GREATLY) improved my disposition.

Sam's bowel issues seem to, for the last few days at least, stabilized....apparently it just took a while to adjust to American sausages...

Unfortunately Sam has developed a fever that he can't seem to shake...That keeps me awake at night. (He sleeps much better than I do by the way.)

We go back to the pediatrician tomorrow and to the ortho Dr on WED. Dr visits are very scary for Sam. In his short life Sam has spent way too much time in hospitals. In addition to Spina Bifida, Sam had repeated pneumonia infections and repeated fractures to his legs...So you can imagine hospitals and DRs offices are not pleasant for the little guy.

I am, as Chip puts it, a Nervous Nelly and if left to my own devices would be in the UCC every day. Thankfully my MD neighbor and Nurse sister have instructed Chip to call them before we carry Sam to the UCC.

Sam is an interesting combination of mature and delayed..His cognitive and creative abilities continue to surprise us. In three weeks he has learned all of his colors and shapes and letters. He even knows 90 % of his letter sounds..amazing. He can count to thirteen and can add up to ten. He entertains himself for hours with elaborate and specific scenarios (Ex: The plastic snake bit our stuffed dog and an imaginary spider-both of which required an ambulance ride -in the back of a dump truck to the hospital and intense medical treatment. In the end the snake was repentant and forgiven...)

Yet his social skills are similar to that of a three year old. His favorite game is to pretend to hide and for others to pretend to look for him..and pretend to surprise him. For at least the last eight months that Sam was at the orphanage, he was the only child with verbal skills..so I guess he has spend much of his life in solitary, pretend play?

Behaviorally, we really keep pinching ourselves and wondering if this is still the "honeymoon period". He has an occasional fit (once every two or three days) . His fits last only two or three minutes and consist of a few tears and minimal resistance. Then he recovers and "rucks on". His dad tells him to ruck up", to "move out" and to "take the hill". I'm really not sure what all that means but Sam seems to understand..Must be a guy thing??

To be specific please continue to pray for Sam's fever and for our Drs appointments this week (Mon and WED).

Again thank you for your continued support and especially your prayers..
Love,
K

Our first week home

We've been home a week now and I can't remember what this house was like before Sam. He continues to amaze and amuse us every day. He sleeps through the night, in his own bed and his diet is slowly expanding. Almost hourly he surprises us with new words--some of which, like his new favorite "stink-pot", we'd rather he not learn! Oh and yesterday Sam rode in the "lift" (which we no longer call an "elevator") without any problems.
That is not to say that we haven't had our moments..Day one home our washing machine broke, days two, three and four, Sam had a bad case of diarrea! Broken washing machine and diarreah= bad combination!!! Thankfully our washing machine is still under warranty and will be repaired on Monday-I might break out in to an alleluah chorus -
Sam apparently feels secure enough in our family to have an occassional temper tantrum-which so far, only last only a few minutes.
Sam loves the independence of his wheelchair--it's the smallest one they make and he is so cute in it. He had a blast using it at Walmart yesterday. Unfortunately, the wheelchair bothers his back so we can't use it for more than about an hour a day.
We had our first regular DR visit this week and Sam handeled it like a chanmp. We have been referred for appointments for neurology, ortho, and urology. These appointments are scheduled over the next few weeks.
So, again, we appreciate any prayers we can get for Sam- especially re medical appointments we have in our immediate future.
Many of you have requested that we continue to blog medical updates. So we will keep it going for a while longer. That way we can be specific about our prayer requests.
Thank you! Thank you ! Thank you!
love,
K

We made it home!!

Whew! We arrived home at about three o'clock this am. We experienced delays on every leg of the journey home, but WE MADE IT!!
Unfortunately, to the five year old Lithuanian ear "elevator" sounds like "alligator"--add to that the mystery of how people disappear behind those strange "alligator" doors and it was terrifying to our little guy. With much prayer (mostly through clenched teeth) we made it through each airport (including Chicago-Dysfunctional-O'hare) with all our carry-ons, the jogger and Sam --and never used an alligator....With a little less intensity Sam also expressed his dislike for the security checks. We prepared him for the actual plane ride but we did not anticipate the "alligator" issue..Certainly not our first or last parenting mistake...Live and learn..
On the positive side Sam actually enjoyed the very thing we expected to be the most frightening----His laughter made take offs and landings fun for us and hopefully a few people seated around us.
We arrived in Charlotte almost four hours late but my dear family waited at the airport to greet us. Because of faithful friends- someone picked up our car when we left and it was waiting for us that night when we returned, so that we did not have to pay parking fees while we were gone..
Even at the late (early hour) our final arrival home was perfect--The ride home had been dark and I think Sam was a little nervous. (He softly sang to himself most of the ride home). As we pulled into the drive the lights were on and our house was decorated inside and out. His nervousness immediately turned into laughter when he saw the balloons and otehr decorations..We foolishly thought we would be in bed within an hour--almost four hours later we were still showing our delighted little boy all the nooks and crannies of his new home..
We also returned home to FOOD--- basket and coolers full--A HUGE blessing this morning when Sam wanted his sausage and juice--
We probably have one or two more posts because I'm sure I forgot something--
Thank you to all of you.--Your prayers and support have sustained us in this journey.
Love,
A very tired K

Hooah!

Quick update--C and I just had a moment --or rather 45 minutes--- of sheer panic--I realized that I left some tax forms that we needed at home..Fortunately, the Family Law Center rep (Dear Elona) and our Bethany reps--(God bless them all) saved the day!!

Hooah (that is Army-speak for "good job" and a whole lot of other things as well..) to the folks at Bethany and the Family Law Center!!

As we mentioned, we fly to Warsaw tomorrow. Wish I'd brought my camera tonight because I have some great pics of Sam and his box which has now morphed into a fishing barge--He continues to surprise us with his creativity! Unfortunately "The Box", which is on it's last leg anyway, will not make the flight to Warsaw--

Prayer warriors, please pray that we get through this last hurdle in Warsaw without any more glitches.

Love ,
K

Monday --hot chocolate

Top two pics are from yesterday. One at our favorite resturaunt and one at the cathederal that is NEVER open--The snow melted a little yesterday so we had fun getting out a little more.

The bottom pic probably looks nasty but it was surprisingly good! Chip ordered Hot Chocolate to drink and was served what appeared to be melted chocolate bars- yum!!

This may be our last post before we return home. We leave tomorrow for Warsaw and I do not know if we will have internet access there. We are staying at the downtown Marriot -which was recommended by friends. A big plus to this hotel is their reportedly soft toilet tissue! I'm not joking and I really hope it is true!

So that is all the news of from our corner of the world..

Love to you all! K

The Lord's Day 4 Februray 2007

Kristin assigned me blog duty this morning. Not much to report. We have 2 more full days in Vilnius: Sunday (today) and Monday. Tuesday afternoon we will fly to Warsaw; we'll be there until Thursday afternoon when we'll fly home, God willing. These days in Vilnius have been a blessing in that they have provided uninterrupted time with Sam. We've had no distractions. However, Kristin and I both are ready to get home.
Kristin and Sam had a great time last night constructing a taxi, which morphed into some type of heavy construction tractor, from the box in which our stroller was shipped. Sam has an active little imagination. His creative mom turned what was fast becoming a boring moment into a couple of hours of great fun. I think Kristin is going to try to attach some pics from that event.
Today will be another day much like that last few, although we will try to get Sam into a church. (You may recall that he told our guide that his mama won't take him to a church where God lives.) I'll get up at 1 am Vilnius-time in order to catch the Super Bowl - hopefully. The "WorldSport" network carried the NFL playoffs; maybe they'll carry the Superbowl, too. I don't think I'll make Sam get up and watch it with me; he probably wouldn't appreciate the father-son bonding time.
Grace and Peace,
Chip

Time for Telly Bye-Bye

Sam (Michelen Man) and his dad at the computer cafe. I can hardly wait to return to South Carolina where I won't spend 20 minutes layering everyone up to go outside.

I can NOT believe that I actually have an opinion about this.... but I have a favorite Telly Tubby--the green one who can dance the best--Dipsy. C's repeated prayer of late has become, "Please let it be time for 'Telly Bye- Bye' " Seriously--we are doing well and just dealing with the annoying, mundane problems of life..which is wonderful...

Can't wait to get home and see most of you soon.. Thank you again for your prayer and support. Love, K

pics I tried to add to last post--

Friday- FEB 2, 2007

About a week ago winter hit Lithuania in earnest. The snow is piling up everywhere. Rather than salt, they tend to "dirt" the roads and sidewalks here. They don't really plow the roads or shovel the sidewalks-they just kind of ride/walk on top of the snow. I've only seen two snow plows and one of those was at the US Embassy yesterday. Unfortunately the jogger is wider than the narrow paths created so I'm getting a real workout. Praise God however, the jogger continues to hold up even though it is often pushed through 18 inches of snow.

When we are out, which is usually several times a day, the boy looks like a Michelin Man - unable to bend his arms for all the layers.

Yesterday we spent the afternoon (ALL afternoon) at the US Embassy. Sam was incredibly patient--well, patient after I declared that he "would not get on the floor-and that was a FACT!" He understood that much English and after that resigned himself to sitting in my lap or a chair. There was a slight hiccup with our paperwork at the Embassy but the Vice Consulate (who appeared to be all of 16 years old!) helped us out.

All is well here. Ready to get back to the States though. Miss you all--Love , k

PS Computer is acting up today and will not show pics--sorry K

last set of pics for today-

One pic is Sam scaring his Daddy in his wolf mask..

As I type today Sam has set up his army men on the large window sill here at the computer cafe-There is a constant monologue with these plastic figures--has been going steady for 25 minutes...His Army men are all in front of (instead of behind ) the defensive barriers. It is taking every bit of restraint in his father to not move them ...Looks as though we will not get an earlier flight--so should return home late the night of 8 FEB..Love K

pics day 3 and 4

pics from 3rd and 4th days- when they let us take him to our apt for the day. In the first he is laughing and playing ball with his daddy..

pics from our second day with Sam

pics- first meeting

Well adding pics wasnt nearly as difficult as I had imagined!!! Wished I figured it out before now--These pics were from our first meeting. i will try to add more--love, K