22
Oct

Pre-Op with the big guys

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Waiting and waiting to be seen in pre-op with Garnet and James.

(Sorry – this was written last Friday, but never posted properly!)

Garnet will be having his bone graft done on his alveolar ridge cleft (hole in his gum line) on October 29th. He’s fairly pragmatic about it and rather excited about the smoothies and video games he is sure will await him after all is said and done. Trust me when I say that we are doing nothing to dampen his enthusiasm!

His surgeon had been considering putting in fixtures that would allow for an expander for his upper jaw at the same time. This is now up in the air as he waits to see more once in the process. We are relieved as it can be tricky at his age.

Back to waiting…. It’s a 2 hour appointment and it sounds like they are already an hour behind!

7
Nov

Hide and Seek

When I can put on my Mama hat and take off my teacher hat, there is something so very cute about how Hide and Seek sounds in this house.

Yes, I said sounds.

As of today (November 7, 2011), Grace has been with us for almost 2 years, Garnet for almost 4 years and Samuel for almost 9 months.

On their own they have cute speech patterns that others discreetly chuckle over sometimes.

Together, they down right make me smile.  And look for my ear plugs…

Grace: Okay.  Now it’s my turn to count.  1-2-3…

Samuel: {loud shrieking giggles fading away as he races to follow Garnet to a good hiding spot}

Garnet: SAMUEL!  (loud huffing sigh)

Grace: Samu-well, come here!  You can’t make so much noise!  (she yells)

Garnet: Wight!  You can’t tell Jie jie where Ge ge is!

Samuel: Oh Tay!

Grace: (goes back to counting)  1-2-3

Samuel: (rather than hiding, begins to count too)  1-2-4-18

Grace: Samu-well!

Samuel: Huh?  Whaaaaaaaaht?

And off they go…

 

 

4
Nov

Something so simple

Can really mean a lot!

Garnet came running into the kitchen holding this partially blown up balloon a moment ago.  It was his words that drew my attention.

“Look Mom, I blew this up without plugging my nose!”

For a kid with a fistula (hole) in his gumline, that’s a big accomplishment!

Way to go buddy!

 

3
Nov

Lunch?!

On the Menu Today…

Green Slime

&

Insects

Ummmmm, no.

Garnet has been taking a certain medication for awhile.  One of the possible side effects is loss of appetite.  And the accompanying Mommy worry.  He doesn’t have a lot of spare change to lose, if you catch my drift.

Bring on the Green Slime aka a green vegetable based protein drink.  I think the picture clearly explains why my children have named it as such.

Do you think his appetite will return for supper?

As for item #2 on said lunch menu.

Well, all it took was a shriek from my littlest dude of, “Mom!  ‘Pider!”, with wild finger pointing at his luncheon plate.

Well after practically breaking my neck from the race across the kitchen, I soon saw the evil beast critter in question.

Okay, once my heart calmed down from the thought of a spider crawling in my son’s salad, I shook my head and thought about it for a minute.

This little guy was fairly cold to the touch.  He was crawling in Samuel’s salad which, I confess, originally came from a wonderful little pre- washed and bagged package.  After our first round of the salad TWO nights ago, it was put into a plastic container and into the fridge.

Talk about survival against all odds.

And, well, yuck!

I kind of felt bad when I took him outside into the 10 degree Celsius weather.  God bless him.

But oooo – yuck!

Hopefully Samuel’s appetite will have returned for supper too, as after I had extricated the ladybug from his foliage, he quickly scrambled down from his chair and said, “All done!”

Can you blame him?  hehe

31
Oct

Happy Halloween!

Halloween 2011

James (15.5) – “Nudist on Strike:

Faith (2 days from 11) – Mime

Grace (3 weeks from 9) – Mermaid

Garnet ( 7 years 1 month) – Clone Trooper

Samuel (3.5) – Lion

With the addition of some face paint and a glitter, it looks like we’re ready to party!

16
Jun

Oh Be Careful Little Eyes What You See

As every parent knows, they watch us.

The kids, that is.

Now, before I go further, this story isn’t about us as adults, but rather what we saw in one of our boys today.

We were driving away for the hospital this afternoon and on our way to the park.  We pulled up to a light and Steve and I noticed a man asking for change.  Without saying anything, Steve powered down the window and handed the man something.  The man thanked him and we pulled away.  We thought the kids were tiredly playing to themselves in the back.   About 15 seconds passes before we hear Garnet’s little boy voice, “That was nice of Dad to give that man some money.” And then it all went back to the quiet play in the back.

He got it.  He had seen the man.  And he saw his own Daddy’s response.

And I got a lump in my throat.

Just a little moment I’ve had the presence of mind to record, but hopefully one of many in the growing of our young man.

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More on Samuel’s road to mobility coming soon. Some new developments and an extra day here tomorrow.  Thank you for praying!

 

11
Jun

Da Boyz

No Children were Injured in the Making of the Photos.

Click on each image to see them larger.

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.

4
May

Just a Moment

For just a moment,

all seemed calm,

quiet,

and I breathed deeply,

in thankfulness.

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.