Wednesday, October 29, 2008

Friday, October 24, 2008

Cleft-Palatese

One of the things we think is most adorable about Willow right now is the very thing we're trying to rid her of, speaking in unintellig- ible garbles and tones. Without the proper "equipment" in the roof of her mouth it's been almost impossible for her to talk and enunciate words that are comprehensible. We actually find that to be cute, especially at this age, even though we know it would be best for her if she could pronounce words properly. So, we call her language "cleft-palatese". Although there's many times we really cannot understand a word she's saying (other than tonal references to one of us, or a "yes" with a short, puffy laugh or a "no" with a "uh-uh"), Poppy can remarkably understand most of what she's saying most of the time. So, whenever we can't make out what Willow's trying to articulate, we'll ask Poppy what she's saying and nine times out of ten she'll get it right. 

Not too long ago Willow was in the back yard playing with Poppy and she was earnestly expressing something to Poppy which Victoria happened to overhear through the open window that looks right down into the area where the girls were. Victoria could hear Willow's expressions but didn't understand them, so she asked Poppy what she was saying and Poppy said, "Willow's telling us to open the door.  She wants to come inside." Sure enough, once Victoria heard the interpretation she could understand that this was in deed what Willow wanted, then opened the door and Willow entered the house with a smile on her face and a sweet little giggle.

Enjoying Cleft-Palatese for now, especially with our interpreter,

Tom (& Victoria)

Monday, October 20, 2008

Sweet "16"

The age of 16 is significant in our culture. It represents an intermediate step, or "pre-passage" if you will, into adulthood. In the State of California it's at this age that you're legally permitted to drive an automobile, provided you can demonstrate competence of course. Yesterday marked this chronological milestone for Barret, who at around 7:30 or so last night officially turned 16. Without a doubt driving is the most single-minded objective he wants to achieve at this age. He's been working diligently on improving his skills, logging in almost 50 hours of training behind the wheel. Slowly but surely he's managed to reduce Mom and Dad's anxiety level from what began at constant "red-zone" peak limits to now just brief moments of fright and terror as we ride "shotgun" periodically shoving our right foot almost through the floorboards with full strength and a stiff boarded straight leg.

Last night we celebrated his birthday with a special dinner on the Oakland waterfront. The restaurant table had a wonderful view. He was joined by all in the family except the little ankle-biters who we left with a neighbor baby-sitter (we figured it was the only way to have a peaceful meal with any focused conversation). Austin also brought his girlfriend, Meagan, who we picked up at the airport on the way there after the two of them just returned from an extra long weekend in Colorado. We appropriately embarrassed Barret with colorful and bright balloons, stories about his unique birth (which we won't go into here), gifts, and just being weird like only families can be in their own special way. We even made Barret carry the balloons back to the car, passing dozens of people along the way, which can be pretty dang embarrassing for a fresh 16 year old. He was a pretty good sport about it all, I must say.

We're proud of Barret. He's virtually a straight "A" student, (works very hard to get those grades mind you), thoroughly enjoys playing the guitar (and is getting quite adept at it I might add), loves his family and those two little China cherubs that now grace our home. Most of all, on the way to the restaurant last night I asked Barret as he sat behind the wheel how turning 16 was going to change his life. He responded by saying, "Well, I really want to be more mature with my life and my walk with the Lord." That was his birthday gift to us.

Warmly in Christ,

Tom (& Victoria)

Saturday, October 18, 2008

Annie's Home!

All week long Poppy has been reminding us that Annie was coming home for the weekend while at the same time asking us how long it would be before she actually came home. That special moment finally arrived last night when Annie completed her trek from San Luis Obispo and stepped into the house about 9:00 o'clock or so. She clearly has a special bond with these girls, remarkably so especially given the short amount of time Willow's actually been a member of our family. Annie's so good with kids, and it's unmistakable that she loves these girls as her younger sisters as if she'd grown up with them since she was a little girl herself. As a parent it's so sweet to see the three of them embrace, laugh, play and take care of each other. Melts your heart.

Today we went to a wedding in Monterey for the daughter of a friend of ours. All the way back during our two hour drive home we talked about weddings, what our children's might be like (especially Annie's since she was dreaming like most girls her age do about this kind of stuff, I suppose). We talked about why it was that the bride's parents end up picking up the lion's share of the tab for weddings, and figured it was probably to make sure the groom's parents don't feel imposed upon while their future daughter-in-law demanded, or should I rather say "politely desired" this and that special element added or rearranged for their once-in-a-lifetime day. It didn't take long for me, while sitting behind the wheel of the car silently contemplating all of this, to realize that the dollar signs in my future were beginning to look rather large. And that's just Annie. It's a good thing Poppy and Willow are down the pike a bit. Better start saving now for them.

Trying not to think too far down the road,

Tom

Friday, October 17, 2008

An Unexpected Setback

What seemed like our long anticipated follow up appointment with Willow's surgeon finally arrived yesterday, actually just less than two weeks after we brought her home from the hospital. I knew things were not quite what we hoped they'd be when I received a phone call from Victoria during my work day (which I was unable to pick up because I was on another call), quickly followed by yet another call (which I couldn't pick up either), then followed by a text message with two words, "Call me!", and then yet another call. When I was finally able to break free I phoned Victoria and just by the tone of her voice (knowing her for over almost 30 years now) I could tell that she was clearly upset and discouraged by the visit with Dr. Cedars. As it turns out, Willow has a fistula (a small passage or opening) about the size of a pencil eraser head through the surface tissue of her three-layered palate repair. He told Victoria that he too was surprised and disappointed, stating that this does in fact happen in about fifteen percent of the cases. Our frustration, unmistakenly, is that "Murphy's Law" kicked in for us Kruggel's (especially Willow) and we/she would just have to fall into that bottom level risk group. Our faith is not rocked, nor do we question God and His perfect providences, but our human natures can't help but be just a tad bit disheartened.

So what this means is that we're in a wait and see mode for the next several weeks, and possibly even months. Which also means that she needs to remain on a very soft food diet (which basically means that everything she eats has to be pureed; not an easy task), refrain from putting anything in her mouth that could possibly exacerbate the fistula, and just generally be on the lookout for danger (and we all know how she loves to get into mischief). Best case scenario is that this heals on its own (which does happen from time to time), and worst case scenario is that she'll have to undergo another corrective surgery. Our obvious prayer, which we hope you'll join us in, is that God would permit the former outcome over the later. We desire to give thanks regardless of His choosing. 

By just looking at her you'd never know there was a problem, nor would you even guess that she recently had surgery or a cleft lip and palate. (Picture above is very recent.) She's just as adorable, lovable and enjoyable as ever. 

Content in Christ,

Tom (& Victoria)

Wednesday, October 15, 2008

A Presidential Prayer

My Dad sent me this prayer today (below) and I just loved it, so I had to post it (appropriate timing given our culture's current political and economic condition). O that I could think and pray so fervently and with such precise insight into the providential protection of thyself.

Warmly in Christ,

Tom

"O eternal and everlasting God, I presume to present myself this morning before thy Divine majesty, beseeching thee to accept of my humble and hearty thanks, that it hath pleased thy great goodness to keep and preserve me the night past from all the dangers poor mortals are subject to, and has given me sweet and pleasant sleep, whereby I find my body refreshed and comforted for performing the duties of this day, in which I beseech thee to defend me from all perils of body and soul.... Increase my faith in the sweet promises of the gospel; give me repentance from dead works; pardon my wanderings, and direct my thoughts unto thyself, the God of my salvation; teach me how to live in thy fear, labor in thy service, and ever to run in the ways of thy commandments; make me always watchful over my heart, that neither the terrors of conscience, the loathing of holy duties, the love of sin, nor an unwillingness to depart this life, may cast me into a spiritual slumber, but daily frame me more and more into the likeness of thy son Jesus Christ, that living in thy fear, and dying in thy favor, I may in thy appointed time attain the resurrection of the just unto eternal life bless my family, friends, and kindred."
- George Washington

Sunday, October 12, 2008

These Angels Are Anything But Blue!

They may be painted blue (with a little bit of yellow here and there), but blue is hardly how I feel after I've seen the Blue Angels. And I'm sure it's hardly how the pilots feel when they're jetting through the clear blue skies of the San Francisco Bay Area on one of its most glorious days of the Fall. It was Fleet Week here in San Francisco and tradition has it that the Blue Angels perform Thursday through Sunday. And our family tradition is to go into the City and get on top of Hines' trophy tower, 101 California (~50 stories), to watch them with unobstructed and sometimes eye-level view. Austin and Annie were a bit jealous when we called and reminded them what we were doing. Of course the Blue Angels never disappoint, and they were true to form this time as well.

The girls were thrilled to see those fast and noisy airplanes too (Poppy went last year as well), although they lost their enthusiasm about 10 to 15 minutes into their 45 minute performance. I guess that's pretty good for a two and a three and a half year old. So they spent the rest of their time running around that 25,000 square foot rooftop (don't worry, there was a good four foot parapet surrounding it) trying to get into mischief at every opportunity.

More adventures in the lifetime memory bank to cherish forever.

Warmly in Christ,

Tom (& Victoria)

Saturday, October 11, 2008

Who Can Know the Depths of the Human Heart?

When I welcome another into my life, whether imperman- ent or for as long as I shall live, I usually either consciously or subcon- sciously ponder whether I have the capacity to love and care for that person at a meaningful and lasting level. I know my own hesitation to enter in with another all too well and ashamedly admit that my selfishness to preserve my cocoon of privacy often overrides what my heart is readily telling me to do, and that's to do just that, enter in. The irony of it all is that when I do listen to my heart and open it up to others, it's rarely, if ever disappointed. On the other hand, when I listen to my mind and close myself off, I'm almost always disturbed and downcast. How quickly and easily I forget the joy and jubilation of giving myself away in exchange for the deceptive discontentment of independence, autonomy and seclusion.

For me, and I know Victoria, the crossroad of decision to adopt or not placed this dilemma right into the cross-hairs of our forward vision. It was inescapable. And quite frankly, it was indescribably frightening. Days and moments before I first met Willow in that hotel foyer in Lanzhou, China, my mind was dizzy with anxiety and haunted with the perplexing and pregnant pause to enter into what I/we were about to embark upon even though we had just done it two years earlier with Poppy. Like most parents, we naturally debated whether we had the capacity to open our hearts and home to another, especially a complete stranger and commit to love and care for her the rest of our lives. Now but four to five months later, while just recently lying next to this once total outsider in the dim light of a day's first passing hours and in a cold and sterile hospital room, staring into her glassy eyes and holding her limp little hand wrapped with surgical tape and pierced with a feeding tube, I can hardly imagine what life was like before her or what life would be like without her. The thought of either stirs up the very same feelings I have when I choose to reject another from my life, malcontent and disenchantment.

Who can know the depths of the human heart but God alone? And apart from Him, it would be but but a beating organ at best, and even that a miracle in and of itself fabricated by the wonder of His Hand. It's the stretching and discomfort of it all that paradoxically soothes beyond the pain and into a rhythm that it was always meant to resonate. For this I ask, I beg of my Lord to push me and our family far beyond my/our comfort zone and into sacrificially living for and with others. This heart has yet to plummet its fullest depths, and I hope that God will stretch it to full capacity before I breathe my last.

Jubilant in Jesus,

Tom

Wednesday, October 8, 2008

"Oh no, not already!"

For any of our blog readers who are inclined to pray, please pray that Willow will be spared from the fever and cold that Poppy has come down with today...we just need a little more "well-time" before the next round! : )

Thank you.

Willow's Winning Ways!




Today marks one week since Willow's surgery. She is doing great! For all the vim and vigor she displays in her life, she is really an amazingly compliant child too. We have marveled at her sleep habits since we returned from China. She goes down with a quick song, and up till a week ago, a bottle of warm milk...without a peep of complaint. We blow a kiss, say "Night-night, I love you", and that's IT! Tom came home last night 5 minutes after she was put to bed and she greets him from her crib with a smile and their traditional, "Ni Hao Ma", and when he leaves the room, again, not a complaint! The same for her naps... When she is awake, she is FULLY AWAKE and Busy as our other posts have described. But at nap time I simply kiss her, plunk her in her crib (which she can now escape from BTW) and she lies down to sleep. If she plays for awhile we simply go in the room, tell her to lie down and she does!! She usually sleeps for 3 hours for her naps, but post-surgery naps have been 4+ hours! We still pinch ourselves as we have never had a sleeping "angel" like this. We think the Lord is having MERCY on us in this department and we never cease to be grateful!!

She has Tylenol with Codeine every 4-5 hours and eats a lot of pasty foods as her palate heals, other than that she is her old self. Poor Poppy struggles with a fair amount of jealousy with all the additional attention this surgery and recovery have brought to her sister...there is nothing new under the sun folks!

I am attaching a picture of me and my Mom. Due to circumstances outside of her control, she wasn't able to raise me past the age of 5, She is a very sweet woman and I had the opportunity to see her a couple of weeks ago in San Diego. My half-brother, Marshall, was married and it was a great time to reunite with family that I don't see very often.

I had to include this picture of Poppy with our 15 year old cat Penelope or "Kitty" as we so creatively call her! Kitty has been sleeping with Poppy these past couple of weeks and it is so sweet. Penelope is a gentle, quiet natured cat and Poppy loves to wrap her up in blankies. Amazingly, kitty doesn't seem to mind one bit!

Sunday, October 5, 2008

I'm Bustin' Outta This Joint!

O. K., so after almost 72 hours of morphine injections, a pierced tongue with a stylin' string hangin' out of my mouth that was taped to my cheek, crusted mucus and other unmentionable things sticking to my skin and hair, caged in a pen built to contain wild animals (What, do they think I need containment or something?), being constantly poked and prodded by nurses and doctors every 15 minutes or so for almost four days, clamped with stiff-arm "no-no's" (which I figured out how to break free of with Houdini-like finesse), eating virtually nothing but piped-in liquid through a tube drilled into the top of my hand, and feeling a burning sensation at the roof of my mouth that only seemed to flame hotter every time I coughed, can you really blame me for wanting to go home? My greatest comforts were the various shifts my Mama and Baba took to sit by my jailhouse, visits from my big brother Barret, and the fun of being wheeled around the hospital ward in a wagon with my JieJie, Poppy. The nurses were really nice to me, and often times felt like angels from on high.

The news I had longed for finally came on Saturday morning when the nurses and doctors told my Dad that I could go home that afternoon. Right about the time that good news came I could feel the pangs in my stomach hankering for some food, especially when I spotted that banana my Dad tried to sneak into the room and eat without me ever noticing, as if I were born yesterday or something. He was nice to give me some mushed up Jello through a syringe, and even some pureed scrambled eggs, but what I really wanted was to munch down on something with my teeth. I'm told I won't be able to do that for weeks.

When I finally got home that afternoon I was pretty puckered out, so I crashed with my Mama on the bed. I guess she was pretty pooped too. I'm just glad to be home. My mouth is still pretty sore, so my Mom and Dad give me Tylenol with Codine about every four hours or so. That also makes me a little groggy, but I'm doing my best to fight it hard and get back to my usual busy self, exploring everything I can get my hands onto and generally frightening my Mom and Dad to death with my dare devil feats of toddler-hood.

It's good to be alive, generally healthy and progressing toward my next phase of life where I'll finally be able to say intelligible things to people that actually make sense. I'm told that having the right "equipment" makes all the difference in the world. Thank you for praying for me, for taking good care of my family, and for genuinely caring about my well being.

I love you and 'duoxie' ("thank-you very much"),

Xuan Xuan (Willow Rae)

Saturday, October 4, 2008

More Pictures from Day Three...for Annie! : )



Pics!

"She's Back!"



Willow was like a "new" child when I arrived at Children's yesterday and was so busy (as per usual) that she napped a mere 45 minutes from 6:00 AM to 8:30 PM.

She's usually a great napper but no doubt, her little body is whacked out from all she's been through. She enjoyed MANY wagon rides around the floor and was a handful as the "Willow Containment" is limited at the hospital. We will post more tonight as we are expecting to bring her home today. She still hits a great wall of pain sometimes, but she has transitioned to Tylenol by mouth. Here are some pictures..sorry this is so short. All of our batteries are somewhat low! : )

(P.S. Thank you Ellen for the beautiful flowers! Willow loved the balloon!!)

Thursday, October 2, 2008

Slow and Steady Progress





I (Victoria) just returned from another day at Children's Hospital.  My dear husband will spend another night at Willow's bedside tonight. For a variety of reasons, he is just a better candidate for that task and I am so grateful for a husband with such a servant's heart!

Our dear Willow made some progress today, but is still battling a fair amount of pain too.  She remains on an IV for both her pain meds (morphine) and her fluids.  When the morphine has worn off, she becomes agitated, moans and cries her big alligator tears -  and it is so difficult to see her in such pain.  Poor baby...  but, Tom and I both agree that Willow has been a brave little soul!

Late this afternoon, however,  she began to take some  drops of juice and jello bits by mouth. She also chuckled at her silly Dad a couple times today, smiled at Poppy once, and intently listened to her Mama's renditions of "Old MacDonald", joining in on an occasional animal noise.  When she is in pain, singing to her is really the only thing that will distract her for a moment.  I was running out of material (songs) at one point today and Poppy reminded me to sing, "Rock A Bye Baby" -  again - (I sort of feel sorry for the 17 year old patient on the other side of the curtain/room divider).  

We are hoping to go home by Saturday, but will need to see a huge amount of progress tomorrow to do so.  My pediatrician encouraged me not to rush going home but to, "stay as long as they let you", knowing that managing her pain and care,  would be difficult for us at home.

Here are some pictures from today...Oh, the string that is taped to Willow's cheek was thread that had been put through her tongue (ouch!) and then taped to her cheek to keep her from exploring her stitches and also for easier access to her palate should they need to get back in there quickly...it was removed this AM.

Wednesday, October 1, 2008

Not Quite the Grand Canyon

In some respects, our 4:30 a.m. wake-up alarm came all too sudden because we had a restful and cough-free night's sleep from Willow (we thank God for that). On the other hand, it couldn't come quick enough because our spirits were anxious to get Willow's surgery "on the road" after our roller-coaster ride/on-and-off again false surgery starts given Willow's erratic health condition. After getting ourselves ready, we woke the girls up at about 5:15 and plopped their limp little bodies into their car seats in the dark of the morning. (Barret spent the night at a friend's house so that he could get a ride to school and not be disturbed by our early morning preparations.) We arrived at Children's Hospital right on time (6:00 a.m.) and everything seemed to click along like clock-work; check-in, routine questions, forms filled out, verified vital signs, changed into surgical clothing, etc... By the time she was finally wheeled into the preoperative room, Willow was already becoming groggy from the pre-medication and almost fell asleep in Victoria's arms. We met with several different nurses, all of whom were extremely friendly and helpful, the anesthesiologist (seen below), and her surgeons (one for her ears because tubes needed to be implanted, and the other for her cleft repair). Again, all were as equally kind and patient as the nurses. What a wonderful place for sick children, but just as wonderful for fearful parents entering into the unknown with their most precious gifts from God.

It was a sad and somewhat emotionally-restrained moment when Victoria and I watched the anesthesiologist take Willow into her arms and disappear around the corner, into the operating room. We waved good-bye, already starting to count the minutes until her estimated two and a half hour surgery would all-too-slowly come to an end. After killing time by eating a few "things" in the hospital cafeteria, our preassigned pager finally rang its unique tone three hours later. We grabbed our stuff and hurried to the post-operative room. They really didn't want Poppy in there, so Victoria went to see Willow first. I guess it was a bit shocking and moving for her to see her little Xuan Xuan lying there, all helpless with a swollen mouth and all. I finally worked my way in there to see her, sneaking Poppy in, and was thankful that it was over, knowing that the really hard part is yet to come. Dr. Cedars, the cleft palate surgeon, said that everything went swimmingly well given the large gorge in the roof of her mouth. While not quite the Grand Canyon, he said it was definitely one of the larger clefts he's seen and worked on, but then he was quick to say, "Not anymore!"

Willow's now in her room, with Victoria, receiving hourly doses of morphine to ease the pain. Much to our surprise, she's going to be in the hospital for four days and three nights (we originally thought two days and one night). Since she can't eat or drink anything for a couple of days, they'll need to keep her intravenously hydrated and fed, something we obviously cannot do at home.

Our whole family so appreciates your thoughtfulness with prayer, calls, notes, meals, etc... We have it so good.

Gratefully in Christ,
Tom (& Victoria)

PS:  More updates to come later.

This Will Be A Big Day !


Well, we are off in a few minutes to Children's Hospital in Oakland. We can hardly believe we're really going!  We are excited and nervous.  Willow didn't cough ONE time last night!   Thank you Lord!

We sure appreciate your prayers today...We check in at 6:00AM and surgery is at 7:30AM.

We'll try and post tonight!