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For the sake of the archival of Jack’s journey, I thought I’d wipe the cyber dust off the ole’ blog to update Jack’s story. Hopefully this helps those of you on the same journey as us feel more prepared or informed (I put some tips in!), helps our friends understand more about Jack, and of course records his story should he every want to read it.

Jack (Jackie, Jack Jack, Jackers), now 7 years old, still looks like his cute, dimple faced self. I really doubt we’ll ever need to do a nose or lip revision–which is pretty incredible! However, this whole cleft thing is not just about aesthetics, but is just as much (or more) involved in the hearing, speech, and dental arena. Through his  school, Jack has continued having speech therapy once a week.  He’s had wonderful SLP’s that have faithfully met with him and pushed him to be as articulate has he can be. Those speech sessions, however long and numerous are worth it! {Tip for my fellow cleft mamas: Observe those speech sessions–practicing at home is where their success is made–integrate it into your daily conversations. I’ve learned to sneak in speech practice with his reading time–he doesn’t even know he’s getting the extra speech practice.}  His articulation skills have progressed wonderfully and Jack has also grown into a more confident little(ish) guy. T-tubes have allowed his hearing levels to remain satisfactory as well! {Also, Jack’s a super quick soccer player, lover of anything competitive, and a homebody that  enjoys snuggling in with a good book, legos, ipad games, or laughing hysterically with his siblings <3.}

One thing that has not improved with Jack’s speech is the amount of air flow that comes out of his nose when he speaks (nasal air emission). Because speech therapy hasn’t permanently helped this, it was deducted that it was a physical structure issue. Jack recently had a nasal scope performed at Doernbecher to determine the issue.  During the scope he participated in a speech therapy session {can we say, Rock star?}. My gag reflex was going off and I didn’t even have anything in my nose/throat! The camera showed air bubbles escaping in his throat when he speaks; we also got a peek at his epiglottis and voice box–SO cool. {Additional tip: Preparing kids for appointments is key–give a brief overview of what the appointment will be like, rehearse how to react (take deep breaths, stay calm, hold my hand etc), and state what reward lies at the end of said procedure all helps a TON! A fun sleep mask  takes the edge off an object coming towards ones face–we use this in dental procedures too, with headphones/fun music. Jacks song of choice here: “This is my Fight Song” ha!}

The results: Jack’s next surgery–the extension of his palate; the hope is that less air will escape when he speaks. Essentially, the soft palate will be “Z” cut and pushed back. Basically, Jack grew, so the palate that was made for him when he was a baby isn’t long enough. We are excited that this will help him, but also sad that he has to have this extra surgery; he is coming up on his gum line bone graft surgery, so it’s not ideal to us for him to have such major things close together. However, because we found out our amazing surgeon, Dr. Kuang, is leaving, we are super thankful she gets to do this surgery for Jack before her departure.

I am reminded again that there is joy and opportunity in suffering.We absolutely covet your prayers for Jack on March 7th! We know this is the sovereign path that we were placed on and are praying  to rest fully in peace, knowing that God has Jack, and for Gospel opportunity and growth in our family’s life. Will you join us?

Jack most dreads the point of separation from us on surgery day. Please pray for peace in his little heart. Pray for safety, zero infection and that the size on the palate will be perfect, as there is the risk of redoing the surgery if it is not. Pray that we can find yummy things for him to drink during his 6 week recovery. Pray!

Thank you to all that have followed Jack’s story, have prayed for him and love him like we do!! We are excited that he has the opportunity for clear articulation with less effort. Go, Jack!

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As any mother does on her kid’s birthday, my mind is reflecting on the now four years we’ve had with Jack.  Of course I can’t believe how BIG he is and that he can now do big boy stuff like ride his bike, say his letters, and aim his pee mostly into the toilet water.  However, my thoughts have also turned introspectively, and thus I’ve felt compelled to blog transparently about the very beginning with Jack.

So…

Jack was desperately wanted from the conception. He followed our miscarried baby, and our hearts were oh so excited once we knew we were pregnant again. We anxiously awaited passing that 12 week mark and then the ultrasound to find out the sex of our precious bundle.

When our world tilted...
4.5 years ago, chasing the heels of the announcement of “Its a boy!” I heard the word cleft for the first time {outside of a Smile Train commercial}. A small word that turned my safe world upside down. A few days later, a specialty clinic confirmed Jack’s bilateral cleft.

The next statement I recall hearing was “We have to first give you the option of  termination.” This was Emanuel’s first option for my very alive and active 24 week old baby inside my body that we had just intimately viewed in 3D.

I was stunned. My mouth said the right answer, “Absolutely not.” {I thought, I AM a pro-lifer, I believe in life!} But I felt my dry throat tighten and mind flash to the possibility of not having to face this. I have admitted this to very few, but feel compelled to share this today. {Also after the termination suggestion, we were then peppered by a geneticist with questions like, “Sooooo, are you guys related?I know we look a bit alike, but come on! Really???}

After that day, I grieved the loss of not having the”perfect” baby. I hurt deeply and privately. I cried much. These things I hate to even say now, because I love Jack so desperately. As the birth of Jack came closer, I came to terms with the cleft. We educated ourselves and prepared the best we could. To regain a sense of normalcy  I had maternity pics taken and shopped boutiques for his coming home outfit. {I couldn’t decide, so he had 2} We welcomed him with open arms; the minute he was placed on me… well, the rest is history. LOVE.

My heart today is for the  young mom who has stumbled onto our page, for the family who just heard the word cleft for the first time and is googling bilateral cleft, OHSU, Dr Kuang, Dr Garfinkle, NAM, or Doernbecher, and just in case there is even one woman sitting at the crossroad where I sat not long ago. Know this: your baby is a precious, important, and valuable person. You will grieve, and you will face challenges, but life is worth that. While my heart aches for all that our little guy will still face, more than that, my heart overflows with gratitude that I get to be Jack’s mama.  Choose life!

Happy birthday to sweet Jack and his BiG smile!

{Guess what he’s getting? The updated bat cave-to those who know him well, this may seem redundant, but we’re pretty sure he’ll love it!}

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Monday, Jack, Maddox, and I trooped up to Doernbecher for Jack’s follow up after his recent ear tube surgery. Results are in…Normal hearing!  His test was the easiest it has ever been-he even went in the creepy sound proof room all by himself.   Of course I rewarded him with a cake pop. (Max too, since he didn’t cause too much destruction to the lobby) For some reason I had gotten myself all worked up about this surgery and the success or failure of it. It’s crazy how fear can take hold so quickly and so strongly. I’m so thankful Jack is hearing well; his speech work can continue to progress.  I’m also thankful for my Lord, my awesome hubby and my girl friends who know just how to bring me into a sense of calm during these seasons.

Oregon has been good to us–SUNSHINE clear into October–wonderful {and not so normal}!  We have enjoyed this as our schedule has returned to a new normal as well.  {Hurried morning bowls of cereal, quick kisses good bye at school, snuggly boys to read to or take walks with, and mounds  of school work to grade}  Inserted into the mundane was a visit from my sister-in-law Miwa and nephew Isamu. He and Max got to share a fun birthday complete with pinata–so cute {and crazy–we have 4 boy cousins, ages 1,2,3, and almost 4}.  THEN Our nephew Chandler visited us during Sept, so we were able to squeeze in one last summer-ish vaca.  to Sunriver. LOVE!

Thank you to all of you who prayed for Jack!  Now go drink a Pumpkin Spice Latte, admire the changing leaves,  and soak in this season!

I know, I know, wrong season, right?

Wrong!

However sleep deprived I may be at this point in my life, this one thing I know, it’s Thanksgiving.  Through  God’s Word, music, church, books, blogs, conversations,….(need I go on?) — God has so clearly revealed this season to me.  The wonder of the salvation He so freely gave to me is so often lost in the rush of the every day–in the overwhelmingness of life.  And so, as Easter, (yes, the true “holiday” of the season) has crept closer, God has stirred my heart to a place of Thanksgiving for this precious gift.  In this Thanksgiving comes a deeper joy for the simple things he’s allowed in my life, in addition to his eternal grace, coupled with  the deeper knowledge that I am absolutely nothing without Him.

Thanksgiving.  Salvation.  Daily walk with Christ.  Grace. The wisdom of Proverbs.  Praising Jesus with hands held high.  City lights at night. Impromptu dance parties with kids.  Babysitters. Date night.  Naptime.  Waking Maddox from nap, fists clenched, arms stretched.  Texting. Running. Rich friendships. Sunshine. Marshmellows.  You know, the simple things. Thanksgiving.

On the family front, all is well in our crazy busy lives.  Recently we were able to join Anthony in Seattle (THANK you Pass family for lodging!) while he took a class—fun, of course—the highlight being a coffee tour he and I  joined. What’s better than being hopped up on caffeine, on a date, in Seattle?  Allie will participate in her first “meet” for gymnastics this week—can we say, EXCITED?  Jack’s potty trained (for the most part)—this is JOY.  Maddox is rolling all around and trying to be the big 7 months that he is, while we try to capture and hold every BABY moment.

For some Cleft news, Jack did recently fail his hearing test by a long shot, so he’s headed into surgery this next Wednesday.  His ENT will be putting in new ear tubes which will hopefully improve his hearing and in turn improve his speech. Please keep our little chubby guy in your prayers.:)

As we turn our faces toward the cross this weekend and rejoice in Jesus’ resurrection and the relationship we can have with Him, I wish you a very Happy Thanksgiving!  (and lots of candy, sunshine, pretty dresses, and hopefully a hot cup of coffee)

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Jack’s Cleft Journey has continued to evolve so to speak.  We were able to enjoy a fun turn in his journey this last week.  Recently, our fabulous orthodontist Dr. Judah Garfinkle and our talented plastic surgeon Dr. Anna Kuang decided to begin a non-profit organization to aid Oregon’s cleft children.  We were excited when they contacted Jack to be a part of their philanthropic endeavor.  Part of their volunteer team came out and shot video of our family so others families can see Jack’s adorable smile and see the beginning stages of Doernbecher’s innovative comprehensive treatment for cleft children.  The mission of Smile Oregon is to aid Oregon’s children in receiving a full treatment plan whether or not they can afford it and to create a community of support amongst Oregon cleft families.

Smile Oregon’s first event was held this past Friday.  Our family joined them at the MAC in Portland.  How fun to see our cleft team again along with all the supporters they had invited.  Jack was pretty pumped to see himself on video  and I must admit that as a mom, it’s pretty fun to see so many say “awwww” about your son… really a moment I had not envision two years ago.  Jack then proceeded to work the tables around us, flashing his cheesiest smile and sitting on many a lap.  Amid this joy was also the mixed emotion of how much more needs to be done for Jack.  But, for now we will enjoy his spotlight and lull in treatment.

Jack continues to get regular visits to check on all the wonderful work that he received.  A few weeks ago we were pleased to see him pass another vision screening (amidst many tears about his eyes being dilated) and seems on track with his speech progress.  Current favorite words: “No Way!  Meme (baby) and Meme cry!”  We are committed to continue to work with him so he can be speaking clearly by school age.

Adjustments.

With the birth of every child there comes a period of adjustment for our family core.  Each time it opens a new season in life and reconfigures the relationships and routines. So, I knew we’d be in for some adjustments–mainly that we’d outnumbered by our children– once sweet Maddox was born. But, I don’t think I really KNEW.  The days are flying by as we seek to adjust to this new number and attempt to meet all their needs.  Between getting them fed, clothed, working, and homeschooling, we now really know that we now have to PLAN  to get in a great conversation or accomplish something more than the minimum around our home.  Most days as we pillow our heads we are simply thankful they were all fed and made it through the day safely.  Granted, we are only 5 weeks into this family of 5, so surely we’ll adjust a bit more each month, RIGHT? 🙂

Maddox Kai.

There really couldn’t be a sweeter baby–he rarely complains, loves to cuddle and gives the most kissable little faces.  We are all pretty much in LOVE.  We are treasuring these fleeting newborn days and also anticipating the days that 8 hours–or even 4 hours of sleep could be obtained in one session.  Allie has expanded her big sis role to include long moments of carefully cradling baby Maddox on the couch while singing her very own impromptu lullabies.  Jack too is quite smitten with his soon to be playmate.  He is the first-responder to any squeaks of complaint his baby bro. might make.  Jack did have a few unfortunate days , well… weeks, of overall aggression in other areas of his life–even refusing to come to me after Maddox was born; but, fortunately our crazy guy seems to be settling back into fun loving, slightly sneaky Jackers.

Check out Jack’s Smile Oregon Video and a few recent pics–including Jack’s birthday. Happy 2nd Birthday, Jack!!

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11




For lack of more creative wording, it’s out with the old and in with the NEW palate for Jack’ers.  Actually, there wasn’t an old, but ANYWAY,

There WERE old sounds.

Aghh…grunts….ma-ma…nasal cries…really sounds I can’t describe other than

“Jack sounds.”

We MISS them.

And now we hear NEW sounds:

Sucking—a sound and skill OUR baby can now make!

Na Na—a consonant Allie and I have tried to make him say for MONTHS.

Muffled cries—a normal sound that sounds abnormal for Jack.

And thousands of words to come.

Miraculous.

We LOVE them.

Dr. Kuong is totally amazing.  She closed the wide gap that extended from behind his gumline to the very back of his throat.  Instead of two of those ball things in the back of  his throat, he now has one.  She described that as sewing wet tissue paper together.  His nasal septum is no longer visible from inside his mouth.  Food is not appearing from his nose—so far. 🙂  He also had ear tubes put in—we’ve already seen him respond more suddenly to quiet sounds (more specifically, his machine that makes little plastic balls float in the air–totally terrified of it now because the sound frightens him–sorry Auntie Laura!).

The first 24 hours proved to be some of the longest hours of our lives.  Our dear friend, Pastor Greg, helped entertain us during surgery, so that part wasn’t TOO bad.  Jack was also given some great loopy medicine before hand, so he didn’t mind being separated from us.  Afterward, he was very disoriented, sleepy, and upset.  This lasted until the next morning.  Anthony and I gained some arm muscles and marital bonds holding him in those hours.  Now, each day is better.  He still loves to be held, but we are starting to see the Jack spark back in those chocolate eyes.

Our prayer now is that we can help him through the next 5 weeks of recovery. This means no solid food for the poor guy. This means arm restraints for the crazy guy.  Our hopes are that the palate will hold strong and that his speech will develop appropriately.  We’re just dying to have two chatterboxes in our home!

And from our one TRUE chatterbox, here are some of our favorite Allie-isms (or Alexy as she has re-named herself) of late:

For God so loved the world that he gave his only forgotten son…

Give me  that old time permission, give me that old time permission…it’s good enough for me!

I love you Lord….let it be a sweet, sweet sound in my hair.

This is my father’s world..I’ve been totaled in my thoughts….

I pledge allegiance to the flag….and to the replugger, for which it stands…

Thanks to our friends and family for the much needed prayer and support!!



Not too long ago the enormous unknown of what a baby with a cleft would be like made me feel like I was stepping off some sort of life cliff . Amidst all this emotion, one message was clearly sent to us via fellow believers.

We were the parents that God had chosen to have Jack.
Thank you Mom, Tami, Pastor…

10/10/08 proved to be a huge step for our family. It was a LEAP into another LOVE relationship. Instant was my bond with Jack as he was held by my face. His cries immediately stopped when he heard my voice.

Wow.

And now a year has passed. Has it been hard? Yes. But not in the ways I anticipated. It was not hard to show Jack off. It was not hard to take him to his many appointments (thanks Starbucks at the bottom of Doernbechers). It was not hard to love that smile. It was hard to tape his precious face. It was hard to pump a million—make that two million bottles. It was hard to hand him to an OHSU employee for 7 hours.

It was hard to change the face I had so completely fallen in love with. The face that had initially carried news that terrified me. That precious face.

I feel like I am on another side so to speak. I am thankful for the experience of “crossing over” to TRULY love and appreciate beyond the appearance—the cleft or other “deformity” that may be present in those we meet–to see people in the amazing way God has created them. I am proud of the compassion this year has built into Anthony’s, Allie’s, and my life. Is this what I thought my life would hold? No–it is far richer! Are the future medical procedures daunting? Yes. Would I choose the same path again if I had known?

A thousand times YES.

Baby chubs.
Dimples.
Wide Smiles.
Chortle-like giggles.
Mama.
Hugs.
Peek-a-boo.
Scoot scoot scoot.
Slobbery kisses.
Chocolate eyes.
Jackers.

Happy Birthday to the baby that lights up a room with his smile!

Psalm 139:14
I will praise thee; for I am fearfully and wonderfully made: marvelous are thy works; and that my soul knoweth right well.

Really? August already? So much for the grand ideas of hitting the gym everyday this summer, or getting those home repairs done in July. Well, we can scratch one task off the to-do list. Blog update!

The family had quite the busy month of July. We started out with a bang—visited our dear friends Matt & Alisha in Kalispell, Mt. for the 4th of July. If I had the opportunity of owning a vacation home, Kalispell/Whitefish area would definitely be in the running. Did some mt. biking, volleyball, saw the BEST home fireworks show ever and got to reconnect with some great folks. Before we went to Kalispell, we stopped in Spokane to see Lisa’s grandparents. It was the first time they got to see Jack in person. I always love visiting there…it’s not every day that you get to hang out with a very energetic 90 yr. old man and his 94 yr. old bride.

Our weekdays/weekends consisted of a ton of swimming at the pool and the occasional bike ride on the Spring Water Trail. Allie is really getting the swimming thing down. Making some good kicking movements, and even held her breath underwater for 7 seconds. She probably won’t be the next Michael Phelps, but she’s progressing. As for Jack, he could be the next Phelps, as well as the world’s best pool-drinker-guy. That kid loves to put his face in the water. We also did a hike up to the top of Multnomah Falls. First big hike for Allie and Jack. Allie did extremely well, and Jack stayed buckled in the whole time.

Next was a camping trip to Wa. and then a quick stop at Cannon Beach. It was great to spend time in the middle of nowhere, zip-lining through the woods, then catching a beautiful Oregon Coast sunset. Special thanks to the Sorensen’s for hosting us at the cool logging camp site, as well as the Adam’s for the hospitality at Cannon Beach.

Finally wrapped up July with a trip to the Nikkei Legacy Center in downtown Portland. It was amazing to read about the stories of the Japanese Americans (Nikkei) in Portland during WW2 and the detention camps. We even got to see a family friend’s name in a roster for the Expo center holding area. She and her family lost everything and then were placed in the Minidoka camp in Idaho.

Jack’s been doing pretty good with his mobility and sounds. He’s got the scooting-thing down, now on to crawling. For sounds, he’s got mama/baba down and is working on “N” and “H” sounds. Overall, making some progress with the speech, but we still have a ways to go. He’s also eating solids really well. We do get the occasional food up the nasal cavity and he doesn’t like that too much. In a few months he won’t have to worry about that; the palate surgery will be here before we know it!

Overall, we’re doing well and very grateful for all God has given us. How can we not praise Him for His goodness, mercy and grace?

Just an update on Jack’s surgery. We checked in at Doernbecher’s around 6 am and he was in surgery by 8 am. The upper lip repair and rhinoplasty took about 6 hours, but he’s now back in the land of the conscience. He’s doing very well and looks great. Can’t wait to see that light in his eyes again—I’m assuming it will come around after he’s off the morphine. Praise God for His protection and care of Jack while in surgery.

Mom and Dad are a bit tired, but doing well. I’ll update with some pics tonight, but here’s a before/after:

jack-before_after3

Howdy. Just a quick update on the whole crew. Jack’s doing really good; eating well, sleeping well and even spending some random moments with eyes wide open. Lisa is doing well too; recovery is right on schedule. Allie is a pro at being a big sister. I think the whole “playing-with-dolls” thing has had a part in that. Check out the new pics below: