1
Jun

Shriners Update with a couple photos of today’s antics

To say we were amazed at the facilites and staff of Portland Shriners Hospital is an understatement.  Everything was newly redone and the sheer number of staff that we saw during our hours there was just such a sharp contrast to any of our prior experiences with our children’s medical care.  We were greeted by smiling receptionists, admission by informative admissions personnel and ushered into our examining room by a volunteer who grinned and giggled over Samuel’s antics and then served us tea and cookies, with a can of juice for Samuel.  I mean, she even ran to the other area to find him a straw!  Yeah, we were amazed. 

Once we met with his surgeon and related staff, we really felt a sense of peace.  Suddenly we had a description for Samuel’s legs, beside the term “malformed” that was on his referral papers.  His left leg is described as PFFD (click on the link to read good old Wikipedia’s take on the term).  His right leg has a shortened femur and it is called an above the knee congenital amputation.  A bit of a misnomer in that it was never actually amputated, in utero or otherwise, but apparently this is the common term for a “missing” limb.  Having these terms means I have now been able to do a more thorough info search and I am so pleased with the information I’ve now been able to find. 

The surgeon and staff walked us through the options for surgically altering his left leg (yes, a Symes amputation  (click to read the definition) is being talked about at this point).  He will be receiving rods to reinforce a newly shaped knee and will, even further down the road, need a rebuilding of his left hip as well. 

We were sitting there nodding our heads and still feeling a bit shell shocked, but it was different this time.  This time there was a sense of peace and we could see the overall plan that was being put into place.  A sharp contrast from our previous feelings.  I count that as a huge blessing!

We still have some decisions to make regarding the what, when and how of his surgeries (they are projecting an early Fall surgery date), but feel comfortable in the knowledge that we have phone numbers and a coordinator to liaison with as questions arise. 

And then for the surprise! 

We were then told that we would be meeting with the rehab coordinator and the prosthetics team.  Within an hour Samuel had an appointment for his first wheelchair and had already been casted for his first set of “stubby” prosthetics!  It’s no wonder that it has felt like a lottery winner’s dream!  We travel back to Portland very soon again.  We will be there for the week of June 12th in order for his fittings and final delivery of his new “boots” as Steve calls them.  🙂  We’ll be choosing his new chair too.

God has been abundantly good to provide all of this for Samuel.  We are so thrilled to be walking this journey with him.  It is a stretching one and not something I would have ever imagined that I would be not only walking, but honoured to be a part of. 

Just one more thing. 

Shriners has asked us to apply for treatment for Garnet’s cleft too.  We were surprised to learn that they can have empty spots available all because people are unaware that they are a specialty hospital offering treatments, surgeries and aftercare free of charge to applicants.  It is not based on the financial standing of the family and their facilities are used as teaching and research hospitals and are staffed with highly trained and well recommended physicians and surgeons.  Wow! 

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 And just in case you think I have my head stuck only in the medical realm, here is a bit of life from today.

This first photo just makes me smile.  Garnet is our fourth is age order and man do I appreciate his attention to detail.  What you can’t tell by looking at this picture is that all that Rock Band paraphernalia that you see in our front foyer?  It’s been moved from the living room.  Why?  Well, because he was vacuuming the living room and wanted to get to the edges!  Yeah.  I’m blessed.  He brings great skills to our family herd.  Nevermind the smudges and fingerprints on the mirror.  That’s my responsibility.  Umm yeah.  Moving right along…

This would be a common sight in our kitchen these days.  Samuel loves to “break dance” and do tummy spins at a ferocious speed.  He also does hand stands.  And not just quick flips up and down.  Stands (!) that last four to five seconds (counting with Mississippi’s) and sometimes longer.  He loves to use his center of gravity to his advantage.  And now that he has gained almost 4 pounds since coming home (!), he seems to be finding new ways to give his Mama a heart attack  thrill and delight us each day.

30
May

Everyday Chatter

 

Click on the photos to see a larger version of the  {Real} us.

I need to write about our trip to Portland Shriners.  I really am very thankful for the prayer we have had on our behalf.  We came back 100% confident in the team there, but I’ll need to save that for a day when I have a bit more energy to pour into an update.  I came home and woke up the next morning with some king-sized stress knots in my back.  Moving slowly and spending time flat on our hard as rock mattress has helped a lot.

Today I simply want to blog a long string of quotes from my very precious children.  They are treasured things I’ve overheard them say over the past 2 months.  I tend to scrawl things like this on post-it notes and every so often flip through them.  With my latest foray into blogging, I figured why not post some of them? 

From Faith to Grace, “Whine always leads to bad things!”  Exclaimed by Faith when Grace was whining over a lesson.  (Yes, my children do whine on occasion, but you can imagine which winemy mind leapt to!  :))

Samuel, May 17/11: “I tsee you!”, in a sing song voice.

Samuel, April 9/11: I heard, “Smack!  Smack!”, like someone smacking their lips together.  I peeked around the corner and found Samuel using a purple glue stick like lip gloss. 

Garnet: “Tell Dad I have a garbage can in my tummy.” (Too full after a snack.)

Samuel, May 21/11:  Apparently undecided, “Yup!  Nope!  Why?”

James, April 22/11: James using a crayon resist effect on his Easter egg that is intended for his 87 year old great grandma {Granny}, “Eat Pork!” (She giggled herself silly and that’s why we love her.)

Samuel, May 12/11: Calling from his spot at breakfast, “Wake up!”  “Samuel”, I say, “Are you calling for Gege James?”  “Yeah!”, he nods, “Gege three!” (With fingers to show three.) (Gege= Big brother)

Grace, April 6/11: “…Because in this family everyone is special, right Mom?” (Said with an air of, “See!  I told you guys!”)

Faith to Grace: “Just put the angel in the back with the extra toilet paper.”  (Meaning that they had been in charge of building a replica tomb in which to entomb Jesus body over Easter Weekend.  They needed to hide the angel until Sunday morning and apparently they decided that the way they clean their rooms is good enough for the burial site of the King of Kings too.  :))

Garnet: Said extremely cheerfully, “I don’t really want to go, but thank you!”

Samuel, May 3/11: Loves to eat “‘Pie-see”, “Icy-team” & of course, “Choc-a-yee!” (Spicy Thai Chili Sauce, Ice Cream, Chocolate).

James, April 22/11: Again decorating an Easter Egg with craypn resist, “I shouldn’t have gone in the Hot Tub!” ( The colour of the egg?  Well, let’s just say that they don’t call it potty humour for nothing!)

Garnet: Describing some thing’s size, “It was a boat as big as Jesus!”

Samuel, April 9/11: I hear, “No!  No!”, said very sternly from the other room.  It was Samuel looking into the mirrored closet door, telling himself under no circumstances to enter.  hehe

Faith, May 23/11: “I don’t know why, but it makes the family feel really small when one person’s away.”  {This one makes my heart sing!}

23
May

Facing Reality with a Capital “R”

That’s me.

Facing Reality.

We received a surprise recently which has us off to Portland, Oregon tomorrow.

When we returned from our visit to Children’s Hospital last month, we were so thrilled with what God had done in putting all the pieces together for Samuel.  I mean, we were over the moon, couldn’t stop talking about it, absolutely in awe.  I mean, we still are.  And then, to top it off, I received a letter in the mail. 

Months and months ago (like, in the early days of our paper chase for Samuel’s adoption), a fellow Mom of a New Day alumni contacted me.  Her daughter had undergone surgery and been fitted with a prosthetic through Shriner’s hospital and she had great news for us.  Low and behold, she had arranged for her daughter’s Shriner’s prosthetist (Brock) to see Samuel in Beijing when Brock was there on a medical service trip.  New Day had arranged for Samuel to be brought to Brock and as a result of this fellow New Day Mom connecting us, I was able to speak with Brock over the phone and even receive the X-rays that he had taken of Samuel when he examined him in China.  What a treat! 

Well, that got us thinking.  We decided to pursue an application for Samuel to be treated by Shriner’s once home.  Forms were filled out.  I developed a phone relationship with the provincial rep.  And then we waited.  I heard rumors that cut backs had made it harder to receive acceptance into treatment for Canadians and I was hopeful, but I kind of let it go. 

So, here we were less than a week home from our mountaintop high and I received the letter we had been hoping for.  Samuel was accepted into treatment.  I keep equating it to winning a lottery, but essentially it will allow for his treatment and prosthetics to be covered for his entire childhood.  In addition, we can even ride their “Care Cruiser” bus to appointments (many hours each way) and receive accommodations and food vouchers for our time away.  I literally bawled when I heard.  Like many families in the adoption world, our kids (& in our case, both adopted and bio) have needed a wide variety of therapies and tutors and extras to help them grow and learn and heal and blossom.  And each of those come with a price tag.  For once it felt so good to be told again and again in response to my tentative questioning, “No, don’t worry about anything, it’s covered.”

So off we go.  And I should be singing and dancing with glee.

Instead I have a lump in my throat and Reality has hit the past few days.  I would be lying if I said otherwise. 

We need to once again have the conversation.  And the “A” word will be used. 

Amputation.

And yes, to all of you thinking it, I did know it was coming.

I did do my research before we committed to bringing him home to be our forever son.

And we do want the best for him.  We want to give him every chance at a full, healthy, active life. 

Yes, we do.

But it still stings.

We see him as perfect and active and healthy and as living a pretty full life right now.

And every time someone else asks us what the next step is we tell them.

We talk surgeries and aids and prosthetics.

We smile and nod and talk about his bright future.

But underneath there is a part of me that wants to run to him and pick him up and race away as fast as I can. 

Can’t you hear him giggle and can’t you hear him tease?  Don’t you see him climb and and dance and chase his sisters until they run giggling too? 

But I guess that is the difference of perspective.  And of parenting.

Parents have to love a child as they are and yet do the thing that is hardest for their child in order to help them sprout wings and not just crawl, but fly.

I have to fight down that urge to pick up my kids and run away at different times with each of them.  And this week it’s Samuel. 

So I pack the suitcases.  Call my sister-in-law to borrow the play pen.  Make sure the many bits and pieces we need to load into the van are ready.  And I pray.

Will you pray for us too? 

(Photos taken Mother’s Day 2011.)

20
May

What’s a guy to do with all these sisters?!

19
May

Ahhh, to be 3

I have been unpacking school books and reorganizing the school shelves.  Just now I gave Samuel a piece of the left over bubble wrap.  I heard “pop, pop, pop”.  Then I heard something a bit different.  “Smooch, dwaybuchi (sorry), smooch, dwaybuchi (sorry)”. 

Yes, he was kissing the bubble wrap all better.  🙂

All this from the same threee year old who had people (Adults, mind you) covering their ears from his piercing screams in the check out line at Costco yesterday.  He had wanted down.  Now! 

{chuckle}

13
May

Picking Them Up with Both Hands

I just returned from a trip to the mailbox.  I was so excited to find a copy of the brand new book, Picking Them Up with Both Hands, by author Caleb Phillips.  Caleb was a volunteer worker at New Day during the early days of Samuel’s time there.  He used his journals from the time around his days at New Day to compile a first hand account of some of the work that New Day does and even better yet, some personal experiences as a foreign worker in one of China’s foster homes.  In one of the chapters he echoes what we were told about Samuel’s transition to New Day and as much as it makes my heart ache for my son I am so very thankful to have it all in writing to pass on to him one day. 

The very best part about this wonderful book (besides the cover which features a sad looking little Samuel), is the fact that the proceeds from all sales will go towards helping the Rippee family fund their adoption (read about it here and here)! 

Obviously I have a personal connection to this book, but I think it is a wonderful introduction to life inside a foreign foster home.  If you’ve ever wondered just what it would be like to go and do, this book will offer you a glimpse from someone who actually went and did.  Caleb has a simple blog set up where copies of his book may be purchased at: http://booksbenefitingorphans.blogspot.com/

  Won’t you take a look?

Thank you Caleb! 

You obviously have a big heart and we wish you well as you pursue a life focused on blessing the ones so many overlook.

4
May

Just a Moment

For just a moment,

all seemed calm,

quiet,

and I breathed deeply,

in thankfulness.

21
Apr

Samuel update: Another amazing God moment in the life of our little boy

Update: I just added the above photo (taken from waaaaaaaaaay across the room with my zoom lens!).  Samuel really liked dying his hands Easter eggs this morning.  If you look closely, you can even see a touch of green on his chin from a seriptitous lick of an especially green egg.  🙂  Trust me when I say that I am loosening way up from when James was teeny.  hehe

I want to start off by saying that I’ve really appreciated the e-mails asking about us and checking in.  Thank you all! 

We are doing really well.  Just returned home from a first visit to Stephen’s parents.  Samuel warmed up to them right away and I can see the beginnings of a great relationship with his new found grandparents (Fruit Loops are his new favourite breakfast.  😉 

Anyway, we have had sketchy Internet since returning from China, hardware problems, software problems and even a grinding noise in my new camera lens and corrupted SD cards.  So no photos.   Again.  Just received good news on Samuel’s medical front.

We had the chance to see Samuel’s orthopaedic surgeon at our Children’s Hospital.  He had a very comprehensive series of x rays done of his spine, profile, pelvis, hip joints, various angles of his legs.   We were delighted to hear and see so much more than we had before.  It really explained his movements  in a very clear way.

As the radiologist and his team were taking the x rays, Steve was in the booth with them while I held Samuel’s hand and helped him stay focused on not moving (he did amazing!).  As Stephen would ask a question about what he saw and as the team commented on things I began putting pieces of what they were saying together.  Without them spelling things out for us, I knew from my research that what they were describing was not hopeful in the direction of a future with prosthetics. 

I quietly took a deep breath and we carried on our chatter and adjusting and holding still and beginning again for the next x-ray. 

We told the team goodbye and returned to our examination room with Samuel.  We didn’t really talk or comment, and then suddenly in walk the surgeon and his team.  Quietly they close the  door and the surgeon sits down. 

And then he began to explain the x rays.  Fractures, bones that have not fused, floatin bones, nubbin, unattached metatarsal.  And I said, “Wait a minute.  Fracture?”

He quickly stopped mid breath and laughed apologetically, explaining that it was not in fact a trauma induced fracture, but just a way of describing an unfused femur bone. 

Nervous laughter on my part. 

And then as he begins again, it sinks in.  He’s describing undislocated hips.  He’s describing minor (in the world of the amputee) surgeries to prepare Samuel.  He’s explaining that VERY SOON Samuel will begin the life of a bilateral above knee amputee PROSTETHIC WEARER! 

Oh sure, he has a load of work ahead.  He’ll have to undergo surgeries and fittings, sores and preventive measures due to his new legs, but he’ll walk.   He’ll RUN!  He may even play soccer and ride a bike!

The doctor saw what we saw.  A little boy wired for movement.  A little boy who through the diligence and prayer of his physical therapist, was able to move so well that the doctor was filled with surety at the bright active life Samuel will have.   And I am not kidding on that one.  Had the doctor not seen Samuel move he may not have offered the same hope for him. 

And Stephen and I looked at each other and smiled.

And at that the doctor and his team were openly surprised.

I am sure time and they are used to giving “bad news”.  I mean, we were prepared to hear the exact opposite.  the difference?  We knew our Samuel would live to greatness even without his new legs. 

But, with his legs – oh, nothing will stop that boy unless he allows it to! 

But there is more. 

You will not believe this! 

Truly only God!

The doctor and his team literally paused in surprise at our unusual reaction.  And then we began to talk about next steps.  Surgeries to begin.  Meeting with the prosthetist before surgery, etc.  In the process, we let him know that we were from out of town.  We told him the name of our town and again, he stopped in mid stream.  “You’re from ***********?!”

“Yes…..?” 

Turns out that one of his patients also is from our area.  He had also been born as a congenital bilateral above knee amputee.  And he was fitted at age 3 with prosthetics!  And get this?  The prosthetist who fitted that child?  He works back and forth at the Children’s Hospital and our community!!! 

Seriously!  Only God! 

Only God can take a tiny little boy from Yueyang County and bring  him to the other side of the world to a family wondering how they were so blessed to be called his family.  Why?  Because God had already paved the way for his coming.

Blessed be the name of the Lord! 

He is Risen Indeed!

29
Mar

The Tooth Fairy Cometh

Some of you may remember our little visit from the Chinese Tooth Fairy while we were in Changsha.  Grace had lost her first tooth with us, and there was much rejoicing when she found her Yuan under her pillow the next morning.  She’s saved that Yuan, by the way, and the local branch of the international currency exchange (aka. Mom and Dad) will be called into use soon in order to make sure she has the required Canadian currency with which to puchase her “Barbie Airplane Set” {cue the music}.  She’s been saving for this bad boy for quite awhile now. 

Anyway, after our latest visit to our dentist this past week, we discovered that indeed, not one, but both of our daughters have a mouth full of wiggly teeth.  Stephen made a few comments about needing to take out a loan, while I began altering my mental menu to sustitute apples and corn on the cob for bananas and salad greens. 

Over the past 36 hours two of those wigglers have fallen out – one from each daughter, and tonight I realized that all our talk about the tooth fairy hadn’t entirely sunk in…

Grace: Why didn’t the tooth fairy come yet?

Me: Oh, the tooth fairy must have taken all his change with him to work.

Grace: Okaaaay.  Wait!  His?!  You mean like in the movie?

Me: Ummm.  Remember honey, we talked about the tooth fairy just being a game we play in our family.  Kind of like a silly joke.  If it’s just a family joke, who do you think the tooth fairy really is?

Grace: Dad!  {suddenly bouncing up and down on her bed} Does he have wings?  I bet he gets really small!  Wow! 

Me: Ummm…

Grace: Yeah!  That’s so cool!  Hey Faith?  {Faith is above her in the top bunk.}  Dad has wings!

Faith:{smile} 

Me: Well, um, it’s time for sleep girls.  {So suave – snort.}  Remember girls the tooth fairy game is just for fun!  You’ll have to ask Dad more about it when he gets home, but I doubt he’ll tell you his secrets. 

Me: {thinking: Poor Steve.  Little does he know what I’ve just set him up for.  Sometimes I think my imagination gets the better of him!  Hope he has time to read the blog.  hehe}  Godd night girls!

Grace: My Dad has wings!  My Dad has wings and he shrinks reaaaaaaallly small! 

Me: {quietly shuts door, shaking head}

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And in other news?

James learned his first song after his 2nd guitar lesson.  Mucho proud of him.  He whipped out his guitar and asked to go past Grandma’s to show her.  I love that he’s still into his family.  His professed highlight?  The fact that as he was waiting outside with his guitar for me to come pick him up, a whole pack of young ladies were walking by and he was, ahem, noticed.  😉

Grace recently began practicing her first piano song using two hands – Old Mac Donald.  Great job Miss Grace!

Faith cleaned our bathrooms today and for the first time ever I think she has passed my fussiness level.  I’m so delighted!  I love that look of pride on their faces when they have learned to do a job really well and they know it!

Garnet has become very opportunistic.  The second I sit down he literally flies over and plunks donw on my lap.  I’ve missed him too.  He hates it when I say this out loud, but he’s still my baby and I need a good dose of snuggle time with him each day or I feel out of sorts too.  I’m glad he is coming to me when he sees the chance.  Never pushing his little brother out, but certainly not passing up the opportunity for his own turn. 

Samuel is currently heading into night number four in his car bed.  Last night was another full night of rest.  We had some good snuggles today.  He is such a deep soul like his brothers.  I really heart my boys. 

Hey, and I got all 5 kids out for lessons, errands, AND a big grocery shop and made it home alive.  🙂  Moments like these must be celebrated.

28
Mar

More on sleep

Yes, that is my theme-song these days.  🙂

You see, I have the sweetest, funniest, most loving, mischievious three year old on the planet.  But as I’ve mentioned before, he spends his days so intent on charming each and every person he encounters (even people in passing cars as we drive along!) that when he finally lays down, his sweet, sensitive, deep, old-soul self comes all but crashing down upon him and I think it is more than he can bear on his own.  My job, then, is to find ways to help him take those times in the midst of his awake time to pause and snuggle and calm and be still.  Brief times throughout his day just to be still.  Then at nap and night time, I have to find ways for him to feel connected to me and yet maintain physical safety.

As life would have it, he dearly wants to be with his big brothers in the “boy’s room”.  But he also wants his Mama.  Stephen needs to travel regularly and so co-sleeping in our bed is out of the question.  It’s just not safe for him to be there with me without another adult to make sure he doesn’t vault himself off of our bed in his sleep (as I mentioned, he moves all.the.time. in his sleep).  And sleeping in a toddler sized car bed with a child who (by anatomy or desire, I haven’t totally figured out yet) sleeps with his legs bent at a 90 degree angle from the hip makes for a rather unpleasant sleeping experience for his bed mate.  Especially when said child could easily outperform most gymnasts.  ha

So, off we went and bought a crib to put in our room.  I was thinking that if I had it smooshed up against the side of our bed he could be very close to Mama and yet be secure.  Steve and James went upstairs and built it (Our friends call assembling a crib a “marriage tester” – Can I get a witness?).  I bathed Samuel.  Then I brought him into our room to show him and see if he’d be interested.

Ummm, yeah.  Of course not.  {slap forehead.  again.}

He took one look at that thing and pointed.  “‘Nigh, ‘nigh bei bei!”  (He calls all baby beds / doll beds this.)

“Yes!  Samuel’s chuang!” (bed)

“NO!  Wo yao chee che chuang!” (I want car bed!)

And off he went around the corner into his room, muttering to himself, “Wo de chee che.  Wo de chee che.” (My car.)

And he allowed himself to be tucked in, read to, sang to, snuggled (“Twinkle, Twinkle”), nose and tummy rubbed, prayed with (“Ready!” – more on that for another post) and off to sleep. 

Yeah.  We just spent $XXX on a crib as a sleep aid.  And it was worth EVERY PENNY! 

Tonight we had a repeat, with the exception of a few tears (three or four seconds after closing the door with he and Garnet in the room) and then I popped back in to reassure him after 3 or 4 minutes of quiet.   After doing this 3 times, the fourth time he was no longer drowsy, but fast asleep. 

Let’s recap (for my memory in later years) my children’s sleep histories.

James: Hardly slept through the night until age 14 months.  We had routines and patterns we would follow – tunred ourselves in knots to help him and he would wake every hour to two hours. 

Faith: slept wonderful.  Almost went to be with Jesus at age 2 months from Whooping Cough.  Then had to sleep upright for 2 months in recovery.  Then was unable to sleep through the night until around 18 months.  Sleeping is still a challenge for her at times.  For her too, i think night time is when she does her best (or worst) thinking.  We do our best to pray with her and work out her stress before bed, but sometimes it is what it is and she has ways to help herself rest (music, special things).

Garnet: He is our dream sleeper.  The first evening we came home, put on his jammies, read a story, snuggled, sang, rocked and prayed and tucked him into his crib.  He rocked himself (his head) to sleep and woke up 9 hours later cheerful and lively as usual.  He had night terrors at a few momentous times in his first months (after EMDR therapy or after his English had improved enough to tell a bit about his time in China). 

Grace: Struggled with her memories and fears at nighttime.  It was heart wrenching.  The plus side, her loved ones in China were up at that time of day and so we had late night phone calls suring those early months home.  After six months home she was able to get to sleep around midnight and then sleep through until morning.  Since our trip to China, she settles in quickly and easily and sleeps through.  When morning comes she is generally cheery and ready to enjoy her day. 

Samuel, well Samuel’s story is still being written. 

I suppose the reason sleep has been such a focus for me this time is the fact that we are still so new to having four other children who sleep well.  It was a long year for Grace and for me.  I have consistanly been the one the kids want at night and so I guess I have been the most nervous about this area of adjustment. 

All in all, we will weather this new phase.  It all goes back to what we do in the day time to help the kids feel better at night.  And when I hold to that truth, things always seem to go better.