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

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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!

Orthopaedic Update

A bit of history:
According to our perinatologist, around the 5th or 6th week of pregnancy there was most likely a "rupture" or a tear in the amniotic sac Jordan was in (typical sac supposedly and completely random with no genetic issue - our chance of this happening again are as high as anyone elses and no one knows what causes it to rupture other than injury which I didn't have). This/these tears caused sticky "bands" or strands to float around in the sac with her. Her limbs were entangled in them (and her face according to some specialists but some are still wondering if the cleft could really be caused by the bands). In wrapping around the developing limbs and digits blood supply was cut off or limited, causing constriction rings, loss of the tip of a toe, webbing of fingers and toes, extra puffy round balls of skin and it appears a band caught the end of her toes on her right foot then pulled that foot up against her shin and got tangled or wrapped around her calf. Commonly with this situation spinal tethering happens due to scar tissue but was ruled out in her case. More often, I should say, most often this situation results in death or at the very least amputation of limbs and fingers and toes. Many researchers believe that way more miscarriages are a result of this but that it's so early there is no way to really know for sure. The bands wrap around the infants body causing life threatening problems thus causing the miscarriage.
Jordan has had her fingers separated, her cleft lip and palate repaired, some scar tissue removed from her eye area, toes separated, foot released from her calf, constriction bands and extra balls of skin/fat removed and bracing/casting to stretch the tendons and slowly get that right foot in a neutral position. She still has more surgeries to build a thumb for her "good" hand (ironically although it appears to be the best one it's the least useful without a thumb that works efficiently), re-work her nose, reposition her eye, put an artificial tear duct in her eye, and any subsequent surgeries down the road particularly due to her palate issues (orthodontic work, fistula closure, jaw distraction if necessary, etc.) and cosmetic stuff to fine tune things for her face.
As you've seen on the blog we've been struggling with her leg splinting/stretching/bracing/ situation. The brace that works well is almost too strong for her while the others aren't working at all. All of them cost money our insurance company won't give without a major hassle. A friend's mom works in an orthotic and prosthetic office. He is a Christian and goes to church with this friend. He agreed to see us at no cost. He advised us to see an orthopedic specialist to try serial casting again to determine if bracing will help. This orthopaedic surgeon did an x-ray and found that Jordan has a congenital vertical talus and delayed bone growth in at least that foot (but probably all of her bones). The talus is a bone in the foot. You can look it up online if you can find a good anatomy picture. Basically this bone in her case is tilted and not connected to the navicular (another bone - obviously). Casting won't help and surgery is the only option. Everything I've researched says the surgery needs to be done by the time the child turns two. Jordan will be two in September but this surgeon thinks we need to wait for her bones to be more ossified since it appears she is delayed. He says to wait one year.
My uneducated opinion after researching this to death online is that this talus situation was caused by her foot being forced into dorsiflexion (pulled up to her shin) and is not a result of another underlying neuromuscular problem or syndrome. I believe it is an isolated problem caused by the positioning of her foot in the womb.
We're waiting for an authorization to see a specialist at UCLA named William Oppenheim. He is the head of pediatric orthopaedics at UCLA so we are hopeful that if we can see him he can, at the very least, give us sound advice. Please pray that we would know for sure that this is the surgeon God would have see her and that it would be very clear. Jordan's pediatrician (who we LOVE and can't say enough good things about) is very laid back and suggests just not worrying about the bone growth (or Jordan's short stature) and just give it all some time. I, however, am not very laid back. :) When it comes to Jordan's medical care I am very proactive and cosider it part of my job as her mom to be diligent and proactive with her care. I often wonder how crazy her doctors think I am but at the end of the day I need to know that I did my best for her. I trust in the Lord for her care but I consider it my responsibility to push for the best treatment for her. (Pray that my people pleasing self continues to persist in her medical care despite worrying about what the doctors think when I question things and push for things)
In a nutshell -
New Findings:
- Delayed bone growth (probably just a late bloomer but I'm wondering if it could be delayed only in the affected foot due to vascular compromise)
- Congenital Vertical Talus (Rocker Bottom Foot) requiring surgery (concern of mine is that they have to mess with tendons which can get tricky, I've heard)
Concerns:
- Getting a doctor approved through insurance who is not part of the current group (the ONLY group) here in Orange County as a second opinion who could ultimately treat her alongside her other surgeon at UCLA, possibly pairing the surgeries next year like we've done in the past.
- Why her bone development is delayed (he said that looking at her x-ray she has a "baby foot")
- How this will affect her walking over the next year while we wait.
- Is it painful to walk on it for longer periods of time?????
- What her gait (the way she walks) will be like and also the muscle she will be able to access in her right leg considering her calf muscle was cut in half by the band.
Here's a website that describes her foot issue and if you are interested you can Google Rocker Bottom Foot and see photos. You'll probably be surprised at how similar her foot looks to the pictures.
http://www.emedicine.com/orthoped/TOPIC478.HTM
Sorry for the lengthy post but some of you like the details and I thought I'd recap some.

Jordan's foot just before surgery at four months to separate the foot from the leg.

This one is Jordan's foot. Can you see the resemblance b/t hers and the one I found online?

Online through Google Images

Another photo found through Google.

Another Haircut

I cut Jordan's hair again (round two). I'm trying to catch the front up with the back. I figure if I keep cutting the back they'll eventually be the same length. :)

She's sitting in her new princess chair her cousin, Jayde, gave her. She doesn't really know what princesses are yet but she loves having a chair just her size.

I have some updates about Jordan's leg but I'l post it all tomorrow.

Olympic Sized Prayer...

Our dear friend, Gabe Woodward, is in a swim meet tomorrow that is a precursor to the Olympic Trials. He swam in Greece for the good ol' USofA and is trying to qualify again.
Specifically pray that he will swim his 100m freestyle in 48 seconds - tops. More than that pray that he can be a witness to others he swims with and meets. Pray that even one person will know about Christ when Gabe is done swimming this meet.

He swims at 7:00 tomorrow morning (Friday).

Go Gabe - be bold and swim fast!!!!!!!!!!!!!!!!

Ear Surgery a Success!

Here she is on the way to the surgery center - so happy with her little Lamby thinking she's on an adventure with Mama up so early while it's still dark.

This picture is so cute. Here's where she just kept staring around at everyone but not moving an inch.

"Oh I'm so sleepy after that little nap." So sweet!

Ready to go home!

With her sticker..."I'm a great patient."

Yay! Jordan and Mama are home in time for breakfast. We left at 5:15 this morning, stopped at Starbucks and headed up to Laguna Hills for her procedure. The actual surgery itself took only 10 minutes but the prep and paperwork took over an hour. The doctor said that both ear tubes were out of place and that one of them (the ear she complains about most) was covered with wax and stuck in the ear canal. He said that same ear had quite a bit of fluid too. The better ear, the left ear, didn't have much fluid but the tube was out of that one too. He drained all the fluid, put in new tubes, antibiotic ear drops and then was done. She was so cute when I went in to get her in the recovery room. The nurses were cracking up at her. She was all wrapped up like a burrito and just dazed, trying to figure out where she was. On the way home she was fussing a bit and messing with her ears but overall she's totally fine, watching cartoons with Noah, playing with toys.