Pumpkin Patch

Here are a few pictures from our trip to the pumpkin patch last week with our Bible study group (Thrive). Noah loved the tractor ride (hilarious!) and Jordan just wandered around saying, "pumpkin!" I am growing more in love with Fall each year. I love it so much this year and I'm really enjoying the weather cooling down, learning to bake new things that make the house smell so good and even seeing the kids bundled up with blankets and hats for our early morning runs. It's crisp and cooling down finally and this Summer girl is loving it for once (I used to dread the cooler weather and get so sad as Winter approached).

We're Back on...Again

Okay I have to get JJ to speech so a very quick post. I talked to the secretary this morning and she kindly put us back on the schedule for 7:30 a.m. October 30th.

Scheduling Challenges

Okay I hate to write this but we are being rescheduled AGAIN. Our surgeon's scheduler left a message today saying that they have to reschedule Jordan's surgery, again. Ugg. This is very challenging to me (an understatement) so I am going to go pray about it right now that I would be content whatever the circumstances and that the logistics would work out with caring for Noah, my mom's plane ticket and work schedule, Jordan's other surgeries on our calendar etc. All of these changes are really tough on me emotionally too and obviously an area I need to grow in. I'm a planner and I get quite unnerved when things don't go according to MY plan. Clearly God wants to rid me of this. :)
Pray please if you read this. I will be talking to her tomorrow morning.

Best Friends

I was just thinking tonight about how thankful I am for the fact that Noah and Jordan seem to be falling in love with each other. A few months ago I was really feeling bad that Noah just didn't seem to love being around her. He didn't seem to mind it but I want him to find joy when she's around, for us to begin to build a relationship between the two of them. I began praying daily that God would build a bond between them that they would be affectionate to one another (usually she is adoring him and he's tolerating her exuberance). The very day after I began praying we were riding in the car (I may have posted on this already - don't mind me) and Jordan fell asleep. Noah reached over on his own while she was sleeping to gently rub her leg. He rubbed his finger lightly over her scar on her leg and was looking at it closely then he just kept rubbing her leg so lightly while he was looking out the window. I got tears in my eyes out of thankfulness. What an encouragement to pray more for my children. Since then I've continued to see more and more love between them. Another reminder to me was a questionnaire I saw from Noah's preschool. It's their 5 year old intake questionnaire and one question is "Is your child's best friend his sibling?" I was floored and so convicted. I asked Noah who his best friend was and he said his neighbor, Delaney who is 10 years old! I once again began praying and really working to instill a love for one another in Noah and Jordan. It's a typical male female relationship - I'm working toward him loving her and her respecting him. With respect I mean respecting his boundaries. She's quite affectionate and LOVES him dearly so she needs to respect his wishes to not be mauled all the time. :) All my current pictures of the two of them are on Shan's computer so I will have to post more at another time.

New Look!

I just wanted to freshen things up a bit around here. I hope you like the new look and the new tunes for your listening pleasure.

Just a reminder that Jordan's next surgery is two weeks from tomorrow and I will be posting updates and pictures as we get closer.

Thanks to all of you faithful bloggers!

Much love - Jen

Call + Response

This is not a post to read to your children...

Tonight I saw the movie Call+Response. Here's a short paragraph from the pdf file found at http://www.callandresponse.com/downloads/cr_synopsis.pdf
"CALL+RESPONSE is a feature length documentary film that reveals the world’s 27 million
dirtiest secrets: there are more slaves today than ever before in human history.
CALL+RESPONSE takes viewers deep undercover where slavery is thriving -- from the child
brothels of Cambodia to the slave brick kilns of rural India -- and reveals that in 2007, Slave
Traders made more money than Google, Nike and Starbucks combined."

I am still processing what I learned tonight and want to post more on it tomorrow or this week but I couldn't go to sleep without posting a note for everyone of you reading this to get to your local theaters to see this. Human beings are enslaved for work, sex, violence, and more every day. This isn't just about poor working conditions or prostitution. These victims are taken and kept by force sometimes their entire lives. It is horrific and I am truly at a loss for words. Please find this movie at a theater near you, research it online, watch the trailer, read the write ups and then tell more people about it.

"utterly meaningless"

"Solomon’s refrain that everything the world has to offer is “utterly meaningless” (Eccl.1:2) becomes easier to affirm the older one gets. It seems that with increasing age comes the increasing realization that the world is truly a rip-off. In time we discover that moths do destroy, rust really does decay and thieves actually do break in and steal (Mt.6:19). Eventually we learn that the world’s promises don’t deliver, its pleasures are short-lived, and its celebrated pursuits are like “chasing after the wind” (Eccl.1:14). Unfortunately, Solomon could only embrace God’s satisfying solution from a distance (Eccl.12:9-14). We, on the other hand, are privileged to see it up close (Heb.11:39-40; 1Pet.1:12). While the ultimate phase of God’s plans is yet to come, we can say with Peter that Christ has “redeemed us from our empty way of life” (1Pet.1:18). With Christ’s victory secured on the cross, we can anticipate and celebrate an eternity devoid of sin and sadness. Amid this life’s emptiest days, we can “take heart because Christ has overcome the world” (Jn.16:33). When in this world we feel like “sheep to be slaughtered”, because of Christ’s redemption we can say, “in all these things we are more than conquerors through him who loved us” (Rom.8:36-37). Because we have been “raised with Christ” we can “set our minds on things above, not on earthly things because we have died and our lives are now hidden with Christ in God” (Col.3:2-3). Perhaps Paul put it best when we wrote, “May I never boast except in the cross of our Lord Jesus Christ, through which the world has been crucified to me, and I to the world” (Gal.6:14). Yes, the world has nothing of lasting value to offer, but Christ offers you everything. His life, death and resurrection are our victory, our life and our future. So today may we look past this present order and “fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal” (2Cor.4:18)."

This is a note taken from our church's website as written by our dear pastor (yep that's him at the top). I loved it and it served as such a reminder to me this morning as I was reading Colossians 3 thinking about putting off the things of this world. I'm so thankful for our pastor who does not compromise the Word of God and for our church who lives it out daily. (compasschurch.org)

Surgery is back on!!!

Yay! I'm SO beyond thankful to be writing that Jordan's surgery is back on with Dr. Oppenheim from UCLA!

As I mentioned in the last post I committed to praying faithfully before every single phone call - even before answering the phone. I mentioned in my post that as I was praying for God's timing in making the call to our case manager (insurance) and in the middle of my prayer she called me. Well more than 24 hours had gone by and I hadn't heard from her after pleading my case. I was in the back of a Suburban with seven women heading up to our Women's Retreat through our church so I didn't know how I was going to call her to follow up. I began to pray. We ended up needing to wait at one girls house for about 15 minutes so I kept praying that I would call at the right time and that my heart would be content whatever her response. I was praying and stepping out of the car when the phone rang and it was her calling me - again! God is faithful.

Vivienne, the case manager, said that she talked to the past director who has always approved our out of network stuff and who knows the history. Apparently it was a case of having a new case manager and a new medical director who didn't know the circumstances involved in our out of network doctors. I assumed that was the case but still, honestly believed that I was going to have to go through the months long appeal process - possibly compromising Jordan's care (the timing) in the process.

Through this I've grown yet again in my trust in the Lord and His provision for my life. This past week was an eye opener for me in that my first instinct was to freak out. Mentally I went so quickly back to the first six months of Jordan's life when I was fighting tooth and nail for her care. I didn't see how I could do it again. My disappointment was HUGE. My fear for her care was also evident. Lame! Simply put it was a lack of trust in God and His hand on our lives. I love that when we stop living for ourselves and begin living a life for God, putting full faith in what He has for us it doesn't stop there. I continue to have these layers of sin that get worked on one by one. I continue to learn to trust more and more in God's sovereignty. When I became a Christian I became justified (Dictionary.com's definition: "Also called justification by faith. Theology. the act of God whereby humankind is made or accounted just, or free from guilt or penalty of sin.")

I was forgiven of my sins through Christ as the sacrifice. However I am now in the process of sanctification which is where the peeling of the layers of sin comes in. (Dictionary.com's definition of sanctification: 1. to make holy; set apart as sacred; consecrate. 2. to purify or free from sin: Sanctify your hearts. 3. to impart religious sanction to; render legitimate or binding: to sanctify a vow). In this sanctification there is a gradual taking off of sinful patterns and a putting on of godly attributes, actions, thoughts, etc. Those of you who know me can honestly call me a sinner, plain and simple and very obvious. :) However, I would hope that you cannot look at my life 5 or 10 years ago and say that I am still the same with no progress. That my friends and family is sanctification by God's grace through spiritual discipline.

All that to say that after last week I've grown in my trust in God, my response to disappointment and my reliance on prayer. This is not to say that I will never struggle in these areas again but I am farther along in my trust in God than I was a week ago. It reminds me of a well-known verse Romans 8:28 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." God always works things out for our good and His glory if we have a relationship with him.

I can't go wrong so why fret so much! It's never as bad as it might seem. :)

This is all good to know as I head into the weeks leading up to another surgery. After the last surgery (the last big one where we spent a week in ICU and I thought we lost her) I know for sure that I will be prayed up and will have scripture with me once again to remind to trust in God because WHATEVER He has for me is best.

The new surgery date is October 30th.

I will keep you posted as we get closer.

Thanks for praying! :)

Brief Update

I don't remember if I posted it or not but I found out that our 10/31 surgery date has already been given away. :( I wish they would've talked to me before cancelling it. She offered the 30th but can't promise that date even if we are approved. :(

I've promised myself that I will pray every single time the phone rings or I make a call regarding this insurance issue. Today I was in the middle of praying for wisdom and for me to honestly only want God's will for this the phone rang. It was our case manager. After talking to her and receiving the official denial letter today I'm convinced this is a case of new people coming in and not being thorough in their decision making. The denial letter says that we are authorized to meet with a doctor here in OC for a consultation - we've already met with him and have a consult on file. They apparently didn't see those notes either. Ugg. Also, the new case manager wasn't aware of ANY of the history with the current doctors. I went through it all with her, pleading my case and she is going to talk to the past director who originally approved us going out of network. I've yet to talk to either director. I only have access to the case manager who presents the cases to the directors and acts as a patient liaison.

The current medical director (who denied it) is a local pediatrician who many of my friends take their kids to. Weird thought that my friends know her yet she has no idea who we are, knows nothing of our case yet is able to make a decision that is not in Jordan's best interest. As Philippians states, "My brothers, whatever is true, noble, just, pure, lovely, of good report, if anything is excellent or praiseworthy meditate on these things." I am assuming the best that she does care about the children she is making decisions for but she is also trying to keep costs down and stick to the rules. I don't blame her but I do find it strange that I could run into her at the grocery store and she wouldn't know who I am but her decisions so greatly affect my family.

I'm heading up to Murietta this weekend with my church for our annual women's retreat so I won't be online but if anything changes tomorrow I'll post. I'm planning on calling our case manager back tomorrow afternoon if I don't hear from her. Please pray.

Prayer Requests

I got a very upsetting call today letting me know that Jordan's surgery authorization was denied and her surgery has been cancelled. They will not keep us on the books to reserve the spot until it is worked out. I was told by our case manager that everything was fine and today I find out that the new medical director of Monarch and our new case manager (our last one left on maternity leave) decided that it isn't necessary for us to be out of network at UCLA when there is a provider in network who can provide the services. We have already discussed with Monarch our lack of confidence in the surgeons in network (one pediatric orthopaedic office for all of Orange County). That was the reason the past medical director allowed us to leave Network. They allowed us our office visit and let us schedule the surgery and then denied the authrization.
All this to say that if you would please pray for us I would really apprecite it.
1. That I/we would be content with whatever date/time God has set for Jordan's surgeries this year.
2. That Dr. Oppenheim (his secretary) would hold our surgery date for a few days or a week until I can get someone to call me back to find out more details and petition them by phone.
3. That Dr. Oppenheim, who is on vacation, would email me with a note saying that it is medically necessary that this issue is expedited and also stating the fact that the surgery should have been done months and months ago (further demonstrating reason for our lack of confidence in the old doctor who didn't see it or mention it to us).
4. That I would be diligent in getting the appeal process started (a GIANT headache - we've been through this before and they make it SO difficult and it takes so long that no one can really outlast them).
5. That if could be God's will that this can be resolved tomorrow when our case manager calls me back - that it is simply an oversight on their part in not realizing the history with our past doctor and the reasons permission was granted for us to go to UCLA.
6. That an appeals process wouldn't have to take place - What if we are forced to go back to them and they know that we don't trust them and don't want to be there? An appeal would mean involving our insurance company's quality assurance department and they would go to the office to investigate the files etc. It would be uncomfortable and awful to have to go back there again. Pray it doesn't get to this point.
7. Wisdom and patience, waiting on God's timing and trusting that He is over all of this and already knows the outcome.
Thanks - I'll post more tomorrow.

Happy 2nd Birthday Jordan!!!!!

Two Years

One Year

A Few Minutes

20 Weeks (3D Follow Up w/ Specialists)

Happy Birthday to Jordan Joy!

I will post more later - the kids are up and I have to get going for the day but I wanted to post a note on here for any of you checking today. I am celebrating two years with Jordan today. What a gift she is to us - I am SO very thankful!

Josslyn Victoria

Here's Noah and Jordan's cousin Josslyn.

I wanted to post a picture of her with Jordan at her birthday party but I don't have one - maybe the family can email me one to put on the blog. This is an old picture I have.

Josslyn has always been such a nurturer and such a sweet, loving influence in Noah and Jordan's lives. She used to carry Noah around, feeding him, giving him his bottle. She did the same for Jordan, even wiping up her continuous spit up. She changes diapers and doesn't even complain. She is really so sweet and so caring.

All of her cousins are sweet and loving in different ways but I'm writing about Josslyn because she really, truly touched my heart today. She made a special card for Jordan and wrote a poem for Jordan that she read to the family.

Mommy's Little Girl

I'll hold you forever in my arms even if they get sore. I will always pick you up and love you whenever you get boo-boos or when you need some loving. I'll always play with you, always tuck you in at night and tell you stories, always sing you a lullabye and pary at night, spoiling you rotten and taking you wherever I go (even if I have to the bathroom, ha ha). I won't always give you your way, every Sunday I'll take you to children's church and celebrate the Lord with all our love, strength, and joy!!!! I'll love you to death everyday, change your stinky diaper, watch you play whatever type of sport you would like, feed you peanut butter and jellyl sandwiches with some grapes and juice, sometimes have a momma's day out where we'd go and have fun! I'll always watch the sun set with you, laugh at all the cute things you say. Love U 4 all eternity!!!

By: Josslyn Green

Here handmade card had a picture of Jordan and her own colorful writing that says,

"Dear Jordan,

I hope you have a great birthday! I love you more than a cousin should love you! I can't believe you're two - you're getting so big! Well I just wanted to say I love you and happy birthday!

Love, Josslyn

What a gift you are Josslyn Victoria Green! We love and appreciate you!

Happy 2nd Birthday Jordan Joy!!!

This is our crazy girl pre-game. She was marching back and forth in the back yard with her hat, sunglasses and bag of tea party toys all morning. She was making us laugh just being her silly self but it was even more pronounced as if she knew today was going to be a big day

.

Here are the cupcakes from the party. I am very basic, no frills so I would normally slather on some frosting my brother, Uncle Scotty, told me how to make the cupcakes look like I spent hours on them. I thought they turned out really nice. Thanks Uncle Scotty!

Here's the princess. She's not really into princesses but she loved the girly pink of her party and she loved her dress. It was HILARIOUS! She sat down in the middle of the grass, waited for everyone to gather around and gawk at her. She truly sat there posing for every camera in the family to take pictures and ooh and ahh over her. She was posing it up!!! She was turning her heard, putting her hand under her chin, holding out her painted nails. It was SO funny and SO Jordan. :)

Here are her beautiful nails! I've waited so long to be able to paint her fingernails and it was really special. I waited to do it for her birthday and had so much fun! Her little nails were really hard to paint but we managed and the one foot looks so cute that is missing the tip of the toe because, of course, there is no nail on that toe. Regardless, we had a great time and Jordan loves them. She was waving them around showing them off.

Noah had a bit of a tough time today with all the attention heading Jordan's way but by the end of the night he came around a bit. He sure loved the cupcakes!

One more milestone for Jordan...

We told her craniofacial sugeon (Dr. Kawamoto) that we wanted her to be able to blow out her candle on her 2nd birthday. He said he'd do his best. He did an awesome job on her palate and with time spent in speech therapy we've worked on blowing air out. Today she did it! She blew out her candle on her birthday cupcake. She is SO funny though because every time she blows the candles out she gets scared and freaks out. She signs "all done!" with her hands, looks very alarmed and says, "Oh no!" It's as if she's not sure what she's done. Everyone was cracking up. She was the star of the show and we just love her so much.

Happy birthday Jordan Joy!!!! (her actual bday is Tuesday even though today was the celebration)

Dentist Follow-Up

I took Noah to see Dr. Yehezkel (Dr. Y) this morning. He loves our dentist and couldn't wait to go. The receptionists and nurses were really excited to see Jordan walking and getting so big (this is Jordan's dentist that she sees somewhat regularly so we decided to make him Noah's dentist). It probably helped that we showed up with homemade oatmeal chocolate chip cookies in hand. :)

Dr. Y took x-rays, wiggled teeth, and poked around in Noah's mouth concluding that the front tooth that is still in place is broken up in the root and will die and turn gray. We will watch it for infection and it will probably fall out sooner than the rest. The smaller tooth on the other side of the one that came out has been knocked out of place and is a bit loose but the x-rays do not show that the tooth is broken. He said that his guess is that there has still been damage to it and it will probably die and turn gray too. Noah can't bite into anything for a week and can't eat anything hard since the teeth are loose and could come out. He'll drink from a straw until then too. He has his first day of preschool tomorrow so I'm praying he doesn't eat anyone else's snack and that he doesn't bump his teeth at all so they don't come out too.
I'm still getting used to seeing him with a missing tooth but I'm feeling much better about the whole thing, especially since he's not hurting anymore. I still think he is a bit traumatized by the whole incident. I layed down with him today at naptime and he wanted to lay on my chest. He couldn't get comfortable so he tried laying on his back on me then finally snuggled up in my arms with his face in my neck and fell asleep right away. Normally he's not the cuddly one and hasn't snuggled up like that since he was a baby. I wasn't complaining that's for sure. They grow up way too fast and I'll take any moment like that I can get - especially from my big boy. :)

I took pictures with a disposable camera and after preschool tomorrow I'll post them here.

All I want for Christmas is my two front teeth...

Many of you know that infamous song "All I Want for Christmas is My Two Front Teeth." Well in our house we are singing that tune tonight.

I hate to have to write this post but I'm hoping it will be a bit therapeutic. Noah knocked his front tooth out tonight. I can't believe it - I'm in such shock.

Shan was gone and I was taking the kids to dollar scoop night at Baskin Robbins (a usual treat for this ice cream loving family). We stopped out front to talk to a few neighbors and Noah had a handful of toys. Somehow he fell but wasn't able to catch himself because of the toys in his arms. He was laying there crying and crying and then the blood started so I picked him up assuming he split his lip. My neighbor told me his tooth was on the sidewalk. Ugggg!!!!! He was bleeding so much and wouldn't stop crying so a neighbor took Jordan and I called the dentist. About a year ago or more Noah was at Scooter's Jungle (an indoor bounce house place for kids) and he fell and bumped his front tooth. It eventually died and turned grayish brown. That's the tooth he hit tonight and the one that came out. I was planning on taking him back to the dentist soon anyway because I suspected it was infected. In talking to the dentist tonight he said that his best guess is that the tooth would have had to be pulled anyway within the next few weeks so better (and cheaper) that it happened tonight. I was able to pray with Noah about it (he was TOTALLY freaked out) and talk about God's grace and mercy in having it come out on its own rather than having the dentist pull it.

The bad news however is that I checked before bed tonight and the two teeth next to it are VERY loose and the gums are grayish and puffy. I have a feeling those two are going to die and eventually fall out too. That would mean he'd be missing his front two teeth and the one next to them. Oh boy. I've always been a borderline vain person. I don't really think it's a major sin issue in my life but vanity is for sure one of those "respectable sins" that lurks underneath and others may not really call it sin. Thankfully tonight I wasn't upset by the fact that he will have a missing tooth/missing teeth. We shall see what the dentist says tomorrow and I'm getting a disposable camera to use tomorrow and until my camera is returned from the shop.

I'll post again tomorrow after our dentist appt and talk more about the infamous tooth fairy and what we've decided to tell the kids.

History of ABS

I was given an article from eMedicine by Dr. Oppenheim last week and found it interesting and somewhat amusing. Interesting was the history of Amniotic Band Syndrome and the various hypotheses on how it happens. Thankfully most people agree that it is not something that can be passed on to the child and it's for sure not genetic (we had testing) and it doesn't appear to be caused by a vitamin deficiency or harmful substance (medication, etc.). What it seems is the most common cause is maternal trauma. Something happened to the amniotic sac that damaged it, weakening it and causing the sticky strands of tissue to wrap around her limbs and head. One strand or band was still wrapped around her hand when she was born if I remember correctly. The weird thing is that the only two things I can think of are my running during pregnancy (but many, many people run their first trimester and are fine) and the Dumbo ride at Disneyland. It sounds so funny but I went on that ride when I was at Disneyland during the weeks that the doctors speculate it happened (they can tell due to the development I guess). My OB scolded me for going on the ride but I laughed. Seriously, I doubt it was the Dumbo ride. :) All I know is that whether or not it was Dumbo that did it I am certain that God allowed it and therefore I'm okay with it. :)
Here' s part of the article...notice the italicized part...I was laughing out loud.

Streeter dysplasia is a term used to describe a complex disorder characterized by constricting rings, acrosyndactyly, or, often, amputations of the extremities of neonates. It is analogous to constriction band or amniotic band syndrome (ABS), which was recognized as early as 300 BC. Hippocrates suggested that extrinsic pressures from a ruptured amniotic membrane lead to the formation of bands or digital amputations. In 1652, J.B. van Helmont reported on intrauterine amputations, which he attributed to the pregnant mothers having looked upon maimed soldiers. Montgomery in 1832 and Simpson in 1836 subsequently described series of amniotic band–associated deformities and discussed the differences between agenesis- and amniotic band–induced amputations.
The term "Streeter dysplasia" did not come into use until 1930, when George Streeter postulated a germ plasm defect as one plausible etiology. At that time, his theory was well accepted because of the associated anomalies, which occurred far from the site of the constriction bands. In 1960, Patterson used histology to show how constriction bands looked like normal skin creases. He hypothesized that the same lack of mesodermal development occurs in the area of the band, thereby making the bands simply abnormal creases.
Patterson's theory was later refuted by Richard Torpin, who examined many placentae and infants with the disorder. In 1965, he reintroduced the idea originally held by Hippocrates. He proposed that maternal trauma led to rupture of the amniotic membrane, which then formed into strands. These encircling strands cause extrinsic compression on the head or limb, leading to the formation of bands, vascular occlusion, and, eventually, amputations. Currently, this is the most widely supported hypothesis; therefore, this disorder would be more accurately termed ABS.

Surgery Scheduled!

I talked to the scheduler today and we were given only two options...October 30th and October 31st. Noah is starting preschool (one morning a week) next Thursday and they have their first field trip to a pumpkin patch October 30th. There is no way we would miss that so we had to go with October 31st.
Although we don't technically celebrate Halloween we do get the kids dressed up as something non-scary and we do a loop around the block with their friends then head to church where we have a Harvest celebration with rides, pony rides, treats and so much fun. At first I was SO upset that we'd miss it and I started to feel sorry for us that we seem to miss all the fun. If you remember how challenging last Halloween/Harvest Day was for us, (see blog post) and the emotional rollercoaster it was, you will understand. Again I just want to be like "normal" families whose lives aren't interrupted by surgeries etc. However by God's grace I able to gain perspective and be thankful and content with every circumstance, understanding that I prayed last night and today for God' s timing and this is it. We were at CHOC two years ago Halloween and I remember seeing all the patients and their siblings dressed up in fun costumes having a parade through the hospital (also another post on the blog you can read in the archives). At the time it was certainly surreal realizing that we are stuck between two worlds sometimes - the world of the sick where "normal" is interrupted and then also the typical world we live in that doesn't involve hospital stays, surgeries, therapies, etc. What a gift that we get to be a part of both. I'm so thankful for the families we meet and connect with at hospitals and I'm so thankful for the other world we are a part of - the typical world.
I called the Child Life Dept at the hospital and talked to them about what they offer kids on Halloween. For sure it won't be a godly, Christian Harvest celebration but it will be fun for Noah regardless. We will take him with us the morning of her surgery and while she's having her surgery he'll get to head down to the peds floor to play in the Child Life room with the other kids, making crafts, decorating cookies, and going trick or treating around the hospital. We will sure miss our church family at the Harvest celebration but what an opportunity for Noah to be surrounded by children who are suffering and who lives are also interrupted. What a chance God has given us to further teach Noah about compassion and service. The possibilities are endless - I'm wondering if I should talk to our Kids Ministry staff about having the kids make Harvest crafts for Noah to give to the patients as an addition to their "Halloween" stuff. Hmmm...I'll start praying about that now and you can join me. :)
So there it is - surgery scheduled for October 31st and we'll be staying two days beyond that if all goes well.

Update on Jordan

First I need to let you all know that my camera is broken. :( :( :( :( I am unable to post any pictures which is killing me. It will be weeks before I find out if warranty will cover it and until then I am thinking about getting a disposable.

On to the update:
We met with Jordan's new orthopaedic surgeon yesterday. He is the head of orthopaedics at UCLA and is my new favorite person. Honestly surgeons are total brains and because of that they usually lack the social/people skills that make you truly enjoy their company even though they are really nice. Honestly I am so attached emotionally to all of our surgeons because of what they do for Jordan and for the fact that they walk through some challenging times with us being steady and sure when I'm waivering (God is obviously the one ultimately in control but he uses them in mighty ways that are beyond my understanding). You can see a photo and bio of William Oppenheim if you Google his name with UCLA. He is warm, caring, thorough, patient, he listens, he's helpful and he gets things done. He spent nearly two hours with us which is UNHEARD of in the world of HMOs where each doctor only gets paid for 13 minutes with each patient. He had a waiting room full of patients but knew we drove 2 1/2 hours to see him. Okay enough about Dr. Oppenheim here' s the scoop...
Her R foot - Jordan's right foot has a condition called Congenital Vertical Talus or Rocker Bottom Foot. Basically the bone that connects the forefoot and the hindfoot is at a weird angle pointing down toward the arch of the foot. Without surgery she would eventually not walk on it or not without great difficulty, callouses, and an open wound where the bone would wear down the skin. He x-rayed it and said the surgery is very complicated and detailed and would take 2 to three hours. He will move the bone to the correct position, pin it in place, then cut the two tendons that are stretched out and wrap them around the middle foot securing them. He will then cast her leg...for three months! Yes, she will have a cast for three months and I'm assuming the pins stay in forever. The first six weeks he'll make the cast up high in a shape that will prevent her from walking on it. After that she will have a lower walking cast with a walking boot. How cute will that be - it'll be so tiny. We are trying to schedule surgery for mid-October.
Her hips - The doctor thought Jordan had a leg length discrepency so he considered the fact that she may have hip dysplasia. He did x-rays of her hips and found that she does not. Wheew!
Bone Development - The doctor here in Orange County who looked at Jordan's foot said that her bone age is delayed and that it was probably due an underlying nero-muscular syndrome (in addition to the Amniotic Band Syndrome). I was doubtful and so was Jordan's PT. Dr. Oppenheim said that her bone age is okay so we shouldn't be concerned.
Height - I talked to him about our concerns with her height and her slow growth. She has never been on the growth chart (she's not on that percentile chart that is used to compare children to other children their age - she is to short to make it on the chart). Our geneticist was monitoring her slow growth and was concerned when Jordan was an infant but we haven't been back to see her since we've transitioned most of our care to UCLA. Dr. Oppenheim suggested we see Dr. Pinchus Cohen at UCLA's Growth Disorders Clinic. He said that he is an endocrinologist who can help us. He said that hands down he is the guy we want to see. Shan and I are very excited to finally figure out if there is an endocrine/hormone issue. We're waiting on insurance paperwork to schedule it.

Prayer Requests:
- That all paperwork and timing works out easily with little effort.
- That God's timing is what I want rather than my own.
- That I will take my thoughts captive as we approach another surgery. After our last one (see blog posts in October '07) I find myself needing God's word more and more to protect me from being fearful, that remind me of God's sovereignty. Having moments where I thought we lost her and then the shock of seeing her on a machine for a week has really impacted me more than I thought. I KNOW that I am to not be anxious about anything so I will continue to fill my mind with the truth of scripture as the surgery approaches.
- That more and more I would have opportunities to impact people for God's glory.

Someone asked me yesterday when Jordan's surgeries will be done and in telling her I was kind of shocked myself at how many she will have had by the time she is old enough to drive a car and vote for president. She has had two major surgeries so far (multiple surgeons invovled at least 6 hours the first time then 7 or 8 the second), a minor ear tube surgery, she'll have the foot surgery this Fall, another hand sugery in the Spring, then facial and tear duct surgery next Summer. The foot surgery she'll have soon will possibly need to be redone (50% chance) when she is five and we are expecting at least one more cosmetic surgery on her face during childhood. She will have at least one dental surgery but possibly (worst case) a jaw surgery, another thumb surgery (the one he'll do in the Spring will need to be redone) and probably a fine tuning of her face as a young adult after puberty. Wheew! That is potentially 12 surgeries not counting ear tubes. Weird to think of it that way. I guess that's why we are told to focus only on one day at a time. I often think of the Israelites that God led into the desert for 40 years. He only provided enough food for them for one day at a time. They couldn't store it up, they couldn't make it, they had to see one day at at time and trust in God's provision.
Nice lessson.

Ripple Effect

I've always loved the picture in my mind that goes with the concept of a ripple effect. You drop a pebble into a pond (lake, whatever) and waves are sent out in every direction as far as the water goes. I can remember during the early days after finding out about Jordan's potential challenges but still being unsure of what the future holds. By God's grace alone I was genuinely excited, looking forward to what God would do through this situation - the ripples that would come from this. Knowing without a doubt that God ordains and allows every single detail in this world (see the Holy Bible for proof which is reliable, sufficient, and without error), I knew that He could redeem even a situation that appeared to be the most challenging I've faced yet (and there have been some biggies). :) God promises to work all things together for the good of those who love Him and are called according to His purposes. I am certain of my relationship with God through Jesus and therefore I can only look ahead eagerly to even the direst of circumstances. He will work it out!
In the beginning I couldn't wait to see who God would bless and work on through this. Logging on and reading a comment to my last post titled "Bittersweet" I was SOO encouraged. God is indeed using our trials to spur on others. Adrienne (the girl/woman who posted) said that she has been following our blog since Jordan was an infant! That blows me away. She is a missionary in Guatemala who takes care of children with clefts. She has been encouraged by my blog and by God's work in our lives. This is one example of how God has used our circumstances for other believer's good. I may never meet Adrienne but I am so thankful for her comment and the encouragement that it gave me. It really encourages me to post more often so watch out everyone. :) I'm getting my life organized right now and I'm going to schedule in a bit of time every few days to blog.

Bittersweet

I only have a few minutes so I'll make it short but I wanted to post on something that I've been thinking so much about lately.
About a month ago Jordan took her first steps and now for about one week she's really been walking and not crawling very much at all. I think we can officially say she's a walker now, one month before she turns two. When she first started walking at therapy I was excited and relieved but for some reason I felt a bit sad too. It was so weird that I didn't even mention it. Yesterday we went to therapy and saw Jordan's little friend Ashley come in (her mom is the one who sold us the amazing jogging stroller at exactly the price I prayed for). Ashley will not walk in this lifetime and even has a hard time holding her head up. There have been many days where we've struggled together getting the girls to motivate each other to move with their devices (Jordan's various bars and walkers and Ashley's special high tech walker that enables her to be upright). When Ashley's mom brought her in yesterday in her stroller and Jordan walked right up to her it hit me. I realized exactly why Jordan's walking was bittersweet for me. I could hardly look Ashley's mom in the eyes I felt so sad and almost guilty that Jordan is walking now and Ashley is not. Her mom was so genuinely excited to see Jordan walking around but I couldn't help but feel bad.
I know that in the past there has been a tiny occasional twinge of sadness as I've watched my friends babies half Jordan's age surpass her so quickly and effortlessly (particularly when we weren't sure if or when development would take place) so I feel like I can understand a fraction of what the moms at therapy feel when child after child takes off walking and they are once again faced with the realization and the reminder that their child's life will be different.
Simply put this all falls under the umbrella of discontentment (if that's a word). God has a different plan for each and every one of us - a perfect plan for His purposes and anytime we look around us and compare it's sinful. God has handpicked each situation for us and has given us every single tool necessary yet we continue to look around and want something different.
From now on as Jordan meets more and more milestones I will thank God for His provision and only look around me in order to find someone else to encourage and to pray for. I will turn my bittersweet moments of Jordan's progress into opportunities to pray more fervently for the parents whose lives will be different and more challenging than my own.

Love Letter

Dear Child,
You are my masterpiece. Ephesians 2:10
You are wonderfully and fearfully made. Psalm 139:14
I created you and formed you. Isaiah 4:31
I knit you together in your mother's womb. Psalm 139:14
My eyes saw your unformed body when you were being woven together in the secret place. Psalm 139:15
In love, I chose you before the creation of the world. Ephesians 1:4
I determined the exact time of your birth and where you would live. Acts 17:26
All you days were written in my book before you came to be. Psalm 139:16
I will work out all things for your good [if you love me]. Romans 8:28
I have a future for you that is full of hope. Jeremiah 29:11
I have planned out good works suited especially for you to do. Ephesians 2:10
Find your refuge under my wings. Psalm91:4
My eyes are always looking out for you and I will strengthen you as you commit your heart fully to me. II Chronicles 16:9
Be strong and courageous. Do not be terrified or discouraged about anything, for I will go with you wherever you go. Joshua 1:9
Dedicate yourself to my sacred purpose, and I will do amazing things before you. Joshua 3:5
Remember the wonders and miracles I do. I Chronicles 16:12
I do these things so that all peoples of the earth might know that i am powerful and so you may always know to fear me as the Lord your God. Joshua 4:24
Seek me with all your heart and you will find me. Deuteronomy 4:29
With My Everlasting Love,
Your Father
Almighty God

Over the past couple of years we've been given many Bible verses to encourage us, sustain us, heal us, and rebuke us but this is the first we've received quite this way. On the right hand column of the blog you'll see a painting that a family friend of Shan's painted. Shan's parents buy every grandchild a painting for their first birthday. For Noah we walked through many art galleries to find the one we wanted and with Jordan it seemed so clear that Kim could paint one for her personally. With the painting she wrote this "Love Letter to Jordan" from her Heavenly Father and I just loved it. It was so creative the way she put it together and she unknowingly used so many of the verses that have spoken to me in the past.

Thrive Camping Trip

We went camping at Lake Nacimiento this weekend with our Bible study group from church (Thrive is the name of the group). There were 18 adults and 18 kids camping by night boating and swimming by day. It was a BLAST for the adults and the kids. Two families brought boats, wake boards and even a surf board to surf the boat's wake. Other families brought Sea Doos and Jet Skis to share along with an inflatable slide for the kids and innertube like things to pull behind the boat. It was SO much fun! Noah rode in a kayak with me, on a Sea Doo with Shan and I and also loved the boat. Jordan rode on the Sea Doo with me and loved being rocked to sleep in the boat. We swam, rasted marshmallows and got to know other couples from church. It was the best weekend. Thanks so much to the Youngmans, the Sathers and the Darms for setting it all up!!!
Here are a few of my favorite shots of the kids...






I also put a few other faves on the permanent right side of the blog page.

Huntington Beach - Pre-Kids

When Shan and I were first married I moved into his condo in Huntington Beach. It was our home the first year of our marriage until we moved south to San Clemente. We have SUCH fond memories of our first year as husband and wife. We loved our little condo and the associations pools and jacuzzi's. We loved riding our bike downtown and to the beach/pier (yes only a mile away). We spent many afternoons jogging, walking Junior to the nearby Starbucks and local restaurants. We ate breakfast downtown at Sugar Shack most Saturdays while we read the morning paper, we rode bikes along the boardwalk, Shan surfed non-stop at local breaks and I invested in my future skin cancer many days sunning myself on the beaches. Since moving we've rented it to the same tenant until last month. We've been working hard to get it up to speed and ready to rent again. Today we spent another day cleaning, repairing, hanging blinds, cleaning, changing lights, cleaning, and showing it to prospective renters. We also took some time to take the kids to the pool and hang out with our old neighbors. It really was a great day. I took some pictures of the condo to post online if the current prospective renters fall through. I thought I'd post them here for you all to see.

Jordan was obviously wiped out by the time we got home. Both kids fell asleep before we were even to the freeway. They were SO good all day and so patient that they both got to have pizza and M&M's before crashing. Look closely at all the dirt on her. Nasty! :)

More from DC

Here are a few more pictures.

This one is from our anniversary date to the city. We took the Metro into DC, had an amazing dinner at our favorite restuarant there, Gergia Brown's, then walked around for a while. My mom and step-dad had the kids and had a great night with them.

Here is Noah's favorite in the airplane that looks similar to ones that Grandpa (my dad) and Uncle John (my dad's brother) flew years ago. Uncle John is a pilot and has therefore automatically reached hero status in Noah's world. He LOVES seeing Uncle John and talks about him all the time.

Here's the famous Lockheed F-104 Starfighter. My grandpa (the one who recently passed away) oversaw the work done on this plane and actually got fly as a passenger in it once. I hope I've got the information correct here (Dad, correct me if I'm wrong). I believe my dad said that my grandpa got a certificate for being one of the only civilian passengers. Weird to think that my grandpa - my hero as a child and beyond actually touched that plane, sat in it and it now hangs in the Air and Space Museum in our nation's capital. What a great man he was and what a colorful life he led. I wish he were still here with us to see Noah's face as he looks at that plane and tries to understand that Great Grandpa flew in it.

BBQ North Carolina Style

Every time we go back to my mom's house in DC some of our family from North Carolina drives up and the rest of the family that lives in Virginia drives over too. Aside from seeing family the best part of our trips to my mom's is the BBQ. I am telling you now that Uncle Ronnie (Danny and cousin Ricky help too) makes the best BBQ I've ever had. Fourth of July I tasted some BBQ that came close, so close in fact that I was suddenly unsure that my Uncle Ronnie's still held the title. I shared this with him after he pulled up hauling his hydrolic pig cooker ("peeg cookah" as my Aunt BJ calls it) and it was on! He was "fit to be tied" losing sleep and feeling the pressure the next day for the cook off. This friend from church who made the 4th of July BBQ is also from NC but he is a Lumbee Indian so the taste is similar but not the same. I became the official taster for the day, sampling sauces, meats, and toppings. I also became the blacklisted member. I walked up and conversation hushed for fear I'd leak the recipes or traditions to my new Lumbee friend. It was a pretty good position to be in - I got to taste the food all day long, everyone was waiting for my response and I didn't have to do any of the cooking. :)
In the end I must confess that Uncle Ronnie's BBQ is the best. Sorry Nick. Maybe it's the trailer full of love that drives 5+ hours just to cook up some "peeeeg" for the family to enjoy. Uncle Ronnie and Aunt BJ love us dearly and we feel the same about them. They pray faithfully for our family and Aunt BJ spoils the kids rotten when she sees them. How can I imagine any better BBQ than that??

Uncle Danny insists the secret ingredient to Ronnie's sauce is in the brush - an old paintbrush he rinsed with laquer thinner before giving it to Ronnie to baste the meat.

Here's my mom's husband, Denny AKA Pop Pop, basting with the brush.

From left - Danny, Ricky, Ronnie

Jordan obviously loved the ribs! A girl after my own heart - be sure you wash it down with some sweet tea!

Noah and his 2nd cousin Brad. We pulled out the Nascar shirts and even cut the sleeves off Noah's for the event.

Unfortunately all our pics of BJ with Jordan are on her camera but here she is and Ronnie is in the yellow.

Hand Surgery Update

Jordan and I went up to Orange today to see her hand surgeon, Dr. Neil Jones. This is her usual UCLA hand surgeon who has now moved to UC Irvine. I am SO thankful for him and for his wisdom. I found an article online last night about him. It is an article on UCI's site talking about the top hand surgeon they recently hired - Dr. Jones. Here's the link:
http://today.uci.edu/news/release_detail.asp?key=1786

He went over her x-rays again and still has the same plan as before. Between now and her third birthday (she's turning two next month) he will take bone from her leg and pin it to the bone that's already in her thumb (the lowest bone in the thumb that is closest to the wrist). The bone will grow together and the pins or rod will be removed six weeks later or so. One concern he has is that there is no bone to connect it to on the other end meaning she will have the lowest bone connected to the next one from her leg but there is no bone in the tip of her thumb to attach the other end of the new bone to. Yes, I know it's terribly confusing without seeing a picture. Anyway, when new bone is attached by only one end the end that is not connected to existing bone slowly dissolves. This means that her longer more stable thumb will have to be redone. They can't continue to redo it her entire life. They can only redo it twice. Long term this is not such a great prognosis but we are figuring that the worst case is that her thumb will be back to the way it is now which is not so great (no pincer grasp on that hand - basically no opposable thumb) but maybe medical advances will be as such by then that she can have something else done. He was considering taking a toe and putting it in the place of her thumb but she doesn't have enough good toes to work with. Bummer.

Our plan now is to see Dr. Oppenheim (the orthopedic foot specialist at UCLA who we will see in a month) to find out when he wants to do the surgery on her foot. We will then find out if he wants to coordinate with Dr. Kawamoto when he does her face and artificial tear duct. If so my guess is that they'll do it next summer/fall which means Dr. Jones can do her thumb surgery this fall or winter.

It's funny how I used to go to doctor's appts anticipating and focusing on what the doctors would say about Jordan. I would speculate, ruminate, wonder, obsess about what the plan would be for her. My perspective has begun to shift. Of course I'm praying before I go for wisdom and for discernment for the doctors and us as we plan her course but more now I'm praying for opportunities to share Christ or to influence people for God. I'm also praying specifically for her doctors in their own lives as opposed to simply as they relate to Jordan. Today I was praying on my way that I would be able to meet and talk with people about God and all that he's done, that lives would be changed from my time at this office. I will admit/confess I was skeptical. However as I was filling out papers a woman who had been in a terrible auto accident began talking to me about God and Heaven. She said that God had special plans for Jordan because of her challenges. I told her that God has special plans for all of our lives regardless of our challenges. We talked about Heaven and briefly how to get there. During that conversation a woman walked up getting my attention and I realized it was an old friend I taught with years ago. Her son was in a JetSki accident in high school and lost part of his thumb. He and Jordan have the same doctor and I had forgotten but this woman told me about Dr. Jones before we even had Jordan. We ended up talking for such a long time about trusting in the Lord, examining ourselves to be certain we are in the faith, how trials and our response to them can work out our faith in the Lord. It was great to share the work that Christ has done in my life and also nice to talk to someone who has been where I am now running from therapy appt to doctors appts, wondering how it's going to work out. We talked until the office was nearly closed and I can't wait to keep in touch with her. God is so good and DOES indeed provide. I prayed for His will during this appt and for Him to be glorified and look what happened!
Okay we are still recovering from our trip to my mom's so I am exhausted and still on east coast time. I must sign off for tonight.
I did get a cd of all of Jordan's x-rays from UCLA today. They are so cool! I am dying to post them on the blog so you all can see the bones in her hands and feet. I just can't figure out how to do it yet. When I do I'll post them.
Thanks for reading such a long post.
:) Good night!

Baltimore

Yesterday we spent the day in Baltimore...my old stomping grounds during college. During college I worked in Baltimore and went to school in Towson which is just a short drive from the city. It was great to be back as a tourist (happy to be visiting then heading to a much more tolerable climate in SoCal). My mom took myself, Shannon and the kids to the Baltimore aquarium. The kids LOVED it! We saw the 4D movie where we wore 3D glasses and felt the whales blow hole spray on our faces, snakes tickled our feet (air puffs and a rubber tube), and our seats vibrated and shook along with parts of the movie. It was so cool! Noah woke up this morning talking about the whale spraying him and has been talking about it non-stop all day. He also loved the sting ray exhibit and the sharks. Jordan however cried like crazy when the dolphin show was over. My mom bought her a dolphin stuffed animal and she hasn't let go of it (or stopped kissing it) since. :) Noah got a rubber sting ray that he has been carrying around with him and taking into the bath. He even told me early this afternoon that he was sticky from lunch so he needed to take a bath...with the sting ray. Funny. :)

The picture here with Shan and Jordan shows the backpack carrier they loaned us at the museum. They check strollers and loan out carriers. It is such a great system.

Travel

Killing time trying to kill each other in the airport. Silly from exhaustion.

"Plumb's dance mix is my favorite. Hmmm let me see where it is on this thing."

This photo speaks for itself.

Quick update on our travels...

We left our house last Thursday to fly to my mom's in Maryland with a "short" layover in Oakland (cheaper tickets). We ended up getting stuck in Northern California (as if that wasn't bad enough in itself - ha ha just kidding although we are from SoCal we love NorCal) for seven hours with hungry tired kids before we boarded our plane for our five our flight. Yikes. It was SUCH a long day but the kids did really well. Here's Noah before the plane even took off from Oakland and then there's Jordan. She's the bundle of energy rockin' out on my iPod even after such a long day. We met the nicest people during our wait though. We sat with a family whose son had a repaired cleft lip. He looked great and was probably the sweetest boy we've met. He shared every one of his favorite toys with Noah.

More posts to come...

Trials

Here's a cut and past from my friend's blog. Her name is Summer Martin, she's wonderfully kind, a loving thoughtful friend, she loves the Lord and is consistently growing in her walk with Him. Her blog is www.summalovinn.blogspot.com if you want to read more of her posts.

This one really struck me as I've been talking with a lot of people lately who doubt God's goodness when they're faced with trial in their lives. I always think of the song It is Well With My Soul. I hope that if I were to face a trial of great magnitude that I would respond in the like.


“Reader, if God has given you His only begotten Son, beware of doubting His kindness and love, in any painful providence of your daily life! Never allow yourself to think hard thoughts of God. Never suppose that He can give you anything which is not really for your good. Remember the words of Paul: ‘He who spared not His own Son—but delivered Him up for us all, how shall He not with Him also freely give us all things’ (Romans 8:32).

See in every sorrow and trouble of your earthly pilgrimage the hand of Him who gave Christ to die for your sins! That hand can never smite you except in love! He who gave His only begotten Son for you, will never withhold anything from you which is really for your good. Lean back on this thought and be content. Say to yourself in the darkest hour of trial, ‘This also is ordered by Him who gave Christ to die for my sins. It cannot be wrong. It is done in love. It must be well.’”

by J.C. Ryle

SHE'S WALKING!!!!!

Today is officially the day...Jordan started walking! Yay! Last week it was looking like it would be a long time before we'd see her upright. Her therapists and I were just hoping she'd walk by her 2nd birthday. She was tired today and grumpy so I was assuming it would be a wasted session but then she just took off!

She is so cute with her arms up high and her shoulders up so tight. We'll still use her walker to help her build more strength but also try to get her to walk as much as possible alone.

Check out our video. I'm so glad I had my camera in my purse!

A few pictures

Just a few pictures I've been wanting to add...it's been a long day so I'm not posting much but I will add more in a day or so.

A few of my favorite pics of the kids while at the Woodwards last weekend with her new VERY nice camera.

I love this one of our Noah. He's getting so big! Notice his gray tooth - he fell and knocked it loose last summer and it's now dead. He goes back this month for a re-check.

I love this picture and love this girl! What a nice camera huh? Jordan LOVES the water and was having a great time that day in the baby pool.

Here are a few from Father's Day with my dad. I went riding with him in the Angeles Forest. It was SO fun but quite the workout. We rode out an hour and a half or more and another hour and a half back after eating lunch. It was great hanging out with my dad being outdoors and I loved riding the horses. I rode Jeronimo and my dad rode Tioga. They were on their best behavior.

More posts tomorrow or Sunday. See you then!

Happy Fourth everyone!