Here's the follow-up letter from Smile Train regarding the awards:

Hi, I got back from Hollywood at 2am last night and my ears are still ringing from Sunday night when they announced… …“And the Oscar goes to… Smile Pinki!” You could hear the deafening roar and wild cheering from Hollywood to Bollywood and everywhere in between. This is a great moment for all of us who are part of Smile Train… and the “cast” of The Smile Train consists of more than a million people. It’s a great moment for our incredibly hardworking and dedicated, TINY staff of 43 people who do the work of 200 people! For all the members of our Board of Directors, Board of Governors and Medical Advisory Boards who have spent many years keeping The Smile Train on the right track. For our 1,200+ partner hospitals that are on the front lines every day providing more than 300 free cleft surgeries EVERY SINGLE DAY! For the 5,000+ surgeons, nurses, anesthesiologists, speech therapists, dentists, orthodontists, social workers and other healthcare workers who through their hearts and their hands give each and every one of our patients the safest and highest quality care possible. For our 1,000,000+ donors and supporters who have been so generous and kind and loyal. None of this would have ever happened without their donations.

Most of all, this is a great moment for the millions of children in the world who are suffering with clefts. Waiting and wondering when and if anyone is ever going to come along and help them the way we helped Pinki.
With all of this massive publicity and exposure, good will and good wishes, we will be able to help MANY more children MUCH FASTER than we ever dreamed.
And we aren’t just going to help MANY more children… we are going to help ALL of these children.
To all of you who have helped make The Smile Train possible I say thank you, thank you, thank you.
This Oscar is for you.
And for all those millions of kids with unrepaired clefts out there who are waiting for help, I say hold on.

The Smile Train is on the way.

All the best,
Brian Co-Founder/President
P.S. To see the Smile Pinki trailer, please check out our web site http://webmail.west.cox.net/do/redirect?url=http%253A%252F%252Fwww.smiletrain.org%252Fsite%252FR%253Fi%253DSEPwNNL_Bx8vR8CAA1EdFg...

And the winner is....

YAY!!!!!!!!

Smile Pinki won an Oscar tonight for Best Short Documentary!!

This is so exciting and makes me hope that Smile Train will get more publicity and therefore more money which means more surgeries for these kids who need them.

Thanks for watching!

All Aboard the Smile Train!!!!

This email came to me a couple days ago and I HAD to post it. So many of you have donated to Smile Train in honor of Jordan (no money goes to us - it all goes to Smile Train for children in developing countries to receive surgery) so I had to let you in on this exciting thing. For Jordan's first birthday we wanted to raise money for an organization that would repair clefts for kids who can't afford it. We discovered Smile Train and chose them over all the other organizations because 100% of the money raised goes to children who need it. No overhead, no organizational or corporate fees. 100% goes toward the surgeries. I totally fell in love with Smile Train and their staff as I dealt with them setting up the fundraiser and even afterwards. I've lost track exactly now but in lieu of gifts we (our wonderful friends and family) raised more than $2,500 for Smile Train in "honor" of Jordan. That means that in Jordan's name there have been 10 children whose lives are changed forever! I can hardly write about it I get so excited.

I recently got an email from one of the staff members who went on a missions trip to help with surgeries and I got chills - I want to go so badly and I want to take Jordan with me to talk to the families and to relieve their fears and allow them to meet Jordan and to see photos of her experiences, recognizing that it's not a curse or a cause to be ashamed or to hide your child away. Someday I'm hoping that would work out but for now I'll keep reminding all of you readers that there is a great need here and you can always donate. We have two friends from church, Alison and Cheyenne, who still regularly donate in Jordan's name. I'm so touched every time I get a notice that they donated again.

Please check out the link to this documentary that's up for an Oscar and let's pray together that it wins in order to get more awareness out.

Here's the recent email about the documentary:

Believe it or not, this Sunday night, an 8-year-old girl from a tiny village in India may win an Oscar for The Smile Train.
Smile Pinki, a film about The Smile Train, may just win in the documentary short category.

Little Pinki, the star of the film, has flown all the way from India to the U.S. so that if we win, she can go up on stage and show the world her new smile as she holds the Oscar high! She would not only be the youngest person to ever win an Oscar, but also be a shining symbol of hope and inspiration for millions of children who are suffering with clefts. Desperately poor children who have been crying themselves to sleep at night for years, as they wait and wonder if anyone is ever going to come along and help them.
If you get the chance, please try and watch what may be the most important moment in Smile Train history: Sunday night on ABC, at 8:00pm EST. They tell us this category is shown on TV early in the broadcast which is good because Pinki has to be in bed by 9!

Watch out Angelina and Kate Winslet - Pinki and her new smile may very well steal the show Sunday night. She was in our office yesterday in New York and everybody on our staff fell in love with her. We are so proud that she will be out in Hollywood representing The Smile Train and helping raise awareness for all the children who need the surgery she waited six long years for. Doctors and nurses from more than 1,000 Smile Train partner hospitals in 75 of the world’s poorest countries will also be watching and rooting for Pinki.
You can watch a 3 minute trailer of Smile Pinki right now at our web site www.smiletrain.org and you can also register to find out where you can view the movie or get a copy of it.
If you want to help us, please forward this email to all of your friends and colleagues and ask them to watch the trailer and watch the broadcast too. The more people that watch the better! And what a great way to introduce folks to the work we do.
For years we have been telling donors like you how miraculous this cleft surgery is and how it totally transforms the lives of the children who receive it.
But that being said, the story of Pinki just takes my breath away.
Question: How does a little girl living in desperate poverty in rural India, who didn’t own a pair of shoes when we met her, end up in Hollywood walking the red carpet and getting on stage in front of hundreds of millions of people?

Answer: She takes a train.

Thank you for helping us help Pinki and the hundreds of thousands of other children whose lives have been changed thanks to The Smile Train.
None of this would be happening without your support.
All the best,

Brian Co-Founder/President

http://www.smiletrain.org/video_smile_pinki

We're Home!

Here we are in recovery - it was really nice to have Noah there for an easy surgery. He was so sweet and when she was crying after surgery he kept rubbing her head and even offering her his new Lego jet. He was concerned but not consumed and he was able to help by carrying her suitcase and comforting her so I think it was a GREAT idea for him to be there.

Waiting during surgery - my mom reading a book. Shan's parents have been there for every surgery but they were both really sick today so they couldn't come. I'm sure it was hard for them and we missed having them but hopefully they'll be better soon and can come visit.

Shan playing Legos with Noah while we waited.

Jordan with the baby Vicodin starting to take effect. :)

She kept asking for Noah and he was so happy to see her when he got to wait for a bit with her before surgery.

Wow - we're home and eating lunch. I can't believe how quick and "easy" that was. Doctor Jones was able to leave some of her fibula (shaving the bone graft off the leg bone rather than taking a section of the bone) so it will grow back together quicker and will be less painful. He also said that the thumb worked out better than expected and he hopes she'll have a bit more mobility than he thought originally. There are small pins on the end holding the new bone to the small chip of old bone then a pin going straight through the entire length of the thumb. She's in a splint thing that is half cast half bandage with her fingers poking out. Her leg is in a cast from her toes to her knee. She did great during surgery and also recovery. We were warned that toddlers, typically between two and three get quite angry and aggressive when they're coming out of anasthesia but she did well. At first she did great but then got a little made but holding her and rocking her helped. She really does best as long as she's being held. They gave her a local anasthesia for the hand and leg and also sent us home with a prescription for Tylenol with Codeine. She'll be in the most pain tonight into tomorrow. She's on the couch watching t.v. and about to go down for a nap...along with the rest of us. :)

T'was the night before...

Okay the kids are in bed, things are set out and this is the earliest I've been almost ready for bed. Usually I'm heading to bed around midnight to get up at 4. I'll give you the scoop then get to bed.

The surgery is set for 8:15 tomorrow morning (Tues 2/17) and should only take an hour and a half. She'll recover for a little while then we'll go home. Yes, you read that right - we'll go home. If all goes according to plan she might make it home in time for lunch. Isn't that strange? It's outpatient and that's the way it goes but we're glad because it's one less day of insurance co-pays and less chance to be exposed to the germs that live in hospitals.

Tonight the anesthesiologist (spelling?) called to check in with us. He asked if she is healthy. Shan told him about the cold she got this week - he talked to us a bit about it, asking lots of questions and said that he'll have to assess her tomorrow and decide if he'll be able to do the surgery. It really was a minor cold - no fever, no chest issues, typical 3-5 day pattern for the common virus. Regardless, he sounds quite conservative so we are praying that we will be able to go through with it, safely of course.

My mom took us to dinner at Cheesecake Factory tonight so the kids got to run around at the mall and play on the playground. They had a total blast and it was a great night. Thanks Mom! :)

Every surgery seems to take more of an emotional toll on Jordan and I can already see it. She was really weepy tonight and kept saying "No owie!" in the bath and pointing to her foot. She understands what is going on so as she gets older each surgery gets harder. It's also more sad to me (us) each time because we know that it's hard for her to have to sit on the couch for another six weeks after just being done with three months in a cast. We just feel sad for her I guess. Noah also seems really clingy tonight and actually followed me out when I was putting the car seat in. He kept asking where I was going, where I was taking Jordan and why he couldn't go with me. That's not typical of him - he's been keeping his eye on us all night. It'll be good for him to go tomorrow and see that it's no big deal.

As you go to bed and wake up please pray for us to be able to have the surgery as planned. Pray for wisdom for doctors as they decide the type of splint/cast to use and as they do the surgery. Pray for the best outcome physically and for Jordan emotionally. Tonight as she was in bed, upset she asked to pray again. I love seeing her find comfort in talking to God and I pray that these experiences will be a time of God drawing her to Him so that she will learn out of habit to trust in God until she repents and fully puts her faith in Him. Also pray for contentment on our part regardless and for us to bring glory to God during stressful times.

We'll post tomorrow afternoon during naps some pictures and updates.

Thanks everyone!! :)

Happy Valentine's Day!

Happy Valentine's Day everyone!!!!!!!

My Cup Runneth Over

I've been reading and re-reading a little book called A Gospel Primer for Christians Learning to See the Glories of God's Love by Milton Vincent. It's a short little book that reminds us the gospel is something we must preach to ourselves as Christians daily rather than something we share with unbelievers then forget about. I was recently struck - actually knocked over by something in this book (okay so I'm exaggerating a bit here but it was a big aha moment). :)

Page 47 Thankfulness Enriched by Relief

"The more absorbed I am in the gospel, the more grateful I become in the midst of my circumstances, whatever they may be.

Viewing life's blessings as water in a drinking cup, I know that I could discontentedly focus on the half of the cup that seems empty, or I could gratefully focus on the half that is full. Certainly, the latter approach is the better of the two, yet the gospel cultivates within me a richer gratitude than this.

The gospel reminds me first that what I actually deserve from God is a full cup churning with the torments of His wrath. This is the cup that would be mine to drink if I were given what I deserve each day. With this understanding in mind, I see that to be handed a completely empty cup from God would be cause enough for infinite gratitude. If there were merely the tiniest drop of blessing contained in that otherwise empty cup, I should be blown away by the unbelievable kindness of God toward me. That God has in fact, given me a coup that is full of 'every spiritual blessing in Christ' and this without the slightest admixture of wrath, leaves me truly dumbfounded with inexpressible joy. As for my specific earthly circumstances of plenty or want, I can see them always as infinite improvements on the hell I deserve.

When I look at any circumstances that God apportions me, I am first grateful for the wrath I am not receiving in that moment (The empty part of the cup never looked so good!!). Secondly, I am grateful for the blessings that are given to me instead of His wrath. (Life's blessings, however small, always appear exceedingly precious when viewed against the backdrop of the wrath I deserve.) This two-layered gratitude disposes my heart to give thanks in all things and it also lends a certain intensity to my giving of thanks. Such a gospel-generated gratitude glorifies God, contributes to peace of mind, and keeps my foot from the path of foolishness and ruin."

The bold sentences are ones that particularly stand out to me. This section of this book has not left my mind all week. The scriptural references throughout it are:

Revelation 14:10

Psalm 75:8

Psalm 116

Psalm 23:5

Ephesians 1:3

1 Thessalonians 5:18

Philippians 4:6-7

Romans 1:21, 22, 28, 29

I'm Still Here

Jordan with her new shades (although we were at South Coast Plaza they are NOT designer :) ).

"Man it will sure be nice when I have my new thumb so I can get this candy out!"


Noah with his candy necklace ever so serious and Jordan being her usual silly self.

Sorry it's been so long since I've posted but here's the latest:

Jordan's next surgery is set for Tuesday Feb 17th (this coming Tuesday) at 7:15. They will confirm the time soon hopefully. My mom is flying in as usual for the week, I think Shan's parents are going with us for the surgery and I am pretty sure we'll let Noah join us while we wait this time. We are trying to let him be as involved as possible to give us the chance to make it fun for him rather than scary or something he's removed from. At the same time we are trying to be sensitive to the fact that he is only 3 1/2 so we limit some of the things he knows. We'll take his favorite donuts and a movie for the laptop. Amazingly this surgery is outpatient so we're hoping to be home by naptime. Strange.

Dr. Jones will take a small piece of bone from Jordan's fibula (spelling??) - the outer, lower leg bone and he will pin it to her thumb. Right now the thumb on her right hand has the lower bone up to the first knuckle. Beyond that she has a tiny chip that is not really attached to the other bone, it's floating near it. Because of this her thumb bends all directions with no stability, as if it were just skin. Hopefully this bone graft will stabilize and lengthen her thumb so she has a pincer grasp. There is a decent chance that the bone won't take and pretty much a guarantee that the bone graft will wear away after several years and have to be redone. How many times can it be redone? I'm not sure but I'm guessing not too many. I really have no idea the long term results. All we know is that by roughly three years old the brain decides what works and what doesn't so the timing is good for the surgery now.

This is Jordan's fifth surgery in two years and we expect another ear tub surgery and another face surgery by the time she's three (seven surgeries total by three years old). Each surgery seems to get more difficult even though they are less severe. The first two included multiple surgeons and every limb and her head but she was a baby then so the emotional aspect didn't come in to account as much yet. She is now quite fearful of doctors, she understands that a surgery is coming up, she gets weepy and emotional approaching surgery and afterwards struggles more with the limitations (no walking etc.). In the same way with Noah, every year she becomes more and more a part of our family and we grow more in our love for her and appreciation of the way God created her and the gift that she is to our family. Although we trust in God's plan for her life it still gets harder to again face the risks of surgery and to see her through the recovery.

You can pray for us if between now and then and we'd be so thankful:

- Pray that Jordan would get over her cold and be healthy enough for Tuesday.

- Pray for my mom as she was recently diagnosed with Cataracts (on top of another problematic eye disease she has struggled with) and also for her this week as she deals with the loss of her brother-in-law (her sister's husband died). On top of that she has a stressful job that she will be trying to focus on a bit while she is out here for the week helping us.

- Pray for our trust in Lord before, during and after surgery.

- Pray for God to uphold Jordan and to use trials to draw her and Noah to Him, eventually for them to come to repentance and faith.

I'll post more as it gets closer to confirm the details.

Thanks for checking in after my long absence. :)

Yay! Yay! Yay her cast came off today!!

Everyone is home, safe and sound in bed after a long day. I was up at 5:00 and we left at 6:00. We sat in traffic for a while and ended up rushing to our appt a few minutes late. I still made time to get the kids their donut and myself a coffee (not negotiable). :)

They took the cast off and this is the first time Noah was there for it. She was screaming as usual and Noah looked a little freaked out. The cast guy let him feel the saw so he'd know it doesn't hurt (it only vibrates). After it was off Noah climbed up on the bed with us and just sat there hugging Jordan for a long time. Noah's not much of a hugger so this was such a reminder to me that he is affected when she goes through things.

The doctor x-rayed it and said it looks fine so we were able to leave without a cast. He said that he wants her in a brace 18 hours a day and always when she's walking. He said to see him again after she's been wearing it for 4 weeks straight that much time each day. He also gave us some great advice as to which leg to use for the next surgery (bone grafting) and gave me a few more details on the process of bone grafts and the healing etc.

God SOOO provides in even the smallest detail - we needed an appt at the brace office asap to get the brace so I called them. It so happens that my friend's mom is the scheduler there (Brett Thomas' mom - Jane at SCOPE in Mission Viejo). She answered so I told her our situation but the orthotist was booked unti lThursday. He moved things around for us and told us to come at 1:00 for a fitting. This is the same guy who saw us for free a while back when we were out of insurance money and stuck without a brace. He was wonderful and kind and so generous with his time. We've heard so many good things about him. Today he was SUPER with Jordan (she was scared again, as usual) and she even gave him a big hug afterward. He is rushing the brace so hopefully it'll be done by Friday. We were all home in time for short naps then the kids spent an hour and a half in the bath together. It was great to see her leg back to normal and to scrub off all that nasty skin. I put lotion on it and even painted her toe nails. Yay! I am so happy to have that cast off. We have five weeks until the next surgery and I'm so thankful to have a little extra time without casts. She stood on it for a few seconds tonight but won't stand or walk on it yet. Shan is taking her to physical therapy tomorrow morning so I'm praying she starts walking on it there.

Off to bed now after a long day -

Could it be...???

We might actually get Jordan's cast off tomorrow morning - one week early! She is SO active and doesn't sit still (Kids Ministry workers at church can attest to that one) so she's worn a big hole in the bottom of the cast so her heel sticks out and the front is breaking open. I have been wanting to ask if we can get the cast off early but I didn't want to push it until last night when we found a pretzel in the cast. Yes, in the cast. I was poking around in there and found it. Jordan grabbed it and put it in her mouth!!!!! This is the same girl who threw up her breakfast (stomach flu) without crying or making a sound then looked down at the banana chunk she puked up and put it in her mouth and ate it - again. :) Jordan is honestly like Pig-Pen in the Peanuts cartoon. She cannot keep her hair clean for more than a few hours, it's a HUGE challenge to keep her clothes stain free enough to pass down and now we're expected to keep a cast clean and free of debris. Ya right! Today when I was jogging with them it was really hot and they saw that the sprinklers were on in a big grassy area near our house. They wanted to play - how could I say no? Jordan got wet - very wet of course, while Noah barely got his feet wet then he insisted he take his shirt off to clean and dry his feet. I didn't think about it but after that we finished running home where I let them play at the park for a few minutes...in the sand. Jordan ended up with mud in her cast. It was in the front filling the toe area and also in the hole in the bottom. Ooops. :) I gave them a bath after lunch and spent some time trying to scrap the mud out so the doctor wouldn't scold me to severely tomorrow. I was trying so hard not to gag as I did it. Honestly the skin is so thick and peely and it smells so bad. I'm wondering what it'll look like tomorrow. When I peek down in the leg of the cast I can see that it looks brown and the cloth is stuck to her skin. Yuck.
So there it is - I am ECSTATIC that we are leaving here at 6 a.m. tomorrow to get another x-ray done and Lord willing get her cast off. Three months is a very long time and now that we know that in five more weeks she'll be in more casts after the next surgery we are even more excited for her to have freedom from casts asap. I usually dread seeing the fresh scars after a surgery but it's been longer this time so they're probably healed but at the same time I can't wait to see those blessed scars as opposed to that cast.
One more thing - Noah hasn't been able to take a bath with his sissy since October 29th. They could spend hours in the tub together (making a total mess) so it's no wonder Noah's response was what it was today. I told them that Jordan may be getting her cast off tomorrow and he was so excited and said, "Oh yeah - she can take a bath in the big boy bath tub with me tomorrow!!" So cute. Another funny thing for the books is that later tonight we were talking about how exciting it is that she'll get her cast off tomorrow and she picked up her baby doll backpack, looked at us and said, "Going to see Dr. Jones, see you in the morning" and turned around and walked away. Hilarious. As a correction to Miss Smarty Pants it's Dr. Oppenheim not Jones. :)
Okay I'm off to get things together for our last early morning breakfast in the UCLA Hospital cafeteria (for a few months anyway). If you keep up with my posts you'll know how much I love that hospital and how much I appreciate the fact that they have Starbucks there.
I'll post pictures tomorrow hopefully.
Pray that we'll be able to get the cast off and if not than pray that I won't be discouraged or impatient. I want a thankful and content heart regardless of how things go.

Happy New Year!

Shan's mom and Noah with their sparkling apple cranberry juice.

Cheers!

...and the big kiss at midnight!

I'm just posting a few pictures tonight but need to get to bed so I'll post on the new year and my resolutions (incase you care) another time.

I loved these pictures and had to post them tonight.

Shan's grandma is in town from Iowa so we had his parents and her over for the night New Year's Eve then Shan's cousins and brother and sister came over. We had a triple date Wednesday night - Shan's parents, us and then GG and Noah. This was Noah's first New Year's Eve staying up until midnight (east coast time) and it was his first New Year's Eve kiss at midnight...with his great grandma. That is SO cute! GG is SO special to us and we love her more than we can say so this will always be a wonderful memory for us and something we'll share with Noah when he's older. :)

Potty Training

Here's the set up...big girl undies, donuts, fruit bars, graham crackers, goldfish, chocolate covered raisins, jelly beans, stickers and of course Saran Wrap. :)

I had to put this picture on here. It captures the morning...shirt tucked up out of the way, drinking Sprite, diaper cast aside and Saran Wrap on her cast.

Big Brother very excited about Potty Training Day

Most of you know that we are potty training Jordan this week. It seems a bit premature (she's 2 yrs 3 months) but as usual we are tied to a surgery schedule and therapy schedule that dictates our lives. Shan suggested this weekend that we train her this week. I totally resisted at first but then thought about the fact that we had a week off from appts (except the surgeon's appt) and that with her next surgery coming up we wouldn't have another chance until summer. A few people laughed, said we were crazy and should reconsider but we didn't see that we really had many other options. We went for it. I took just Jordan to Wal-Mart to get her big girl undies and all the sugary and salty snacks and drinks she loves to use as motivation and ammunition. We pumped it up and tried to get everyone excited. Noah was very excited and really looking forward to potty training Jordan. He even reminded me that I needed the timer and told me where it was when I couldn't find it. He saw all the candy and soda and kept saying that he wanted to be potty trained again. :) We assured him that he could certainly partake in the festivities.

We use the method from the book Toilet Training in Less Than a Day. I've never read the book but I have a wonderful friend (Alyssa Buck) who typed up the basics for me with Noah and then walked me through it hourly as I trained him. With Noah (see past blog post about a year ago) it was insane! He peed all over the place and couldn't hold an ounce of pee in. The place was a mess, we were all slipping and sliding and we ran out of underwear. By naptime I was DONE and near tears. He woke up from his nap dry and then didn't have an accident again until bedtime when family came by and we were distracted. He was completely potty trained with no accidents in a week then with "number 2" he was totally set within two weeks. Jordan has been a very different case.

She was afraid to pee on the potty so she'd cry and cry every time we put her on. She'd also hold it for hours and hours. She was downing Sprite but not peeing. We'd finally force her to sit on the potty and she'd scream like crazy then drip a couple drops. It was like that all morning. That afternoon she woke up with a full Pull-Up then began the pattern of leaking a bit and freaking out so we'd get her to the potty to finish. By day two it was better but still leaking some, then saying "Uh oh" and we'd help her to the potty. By day four she didn't have an accident all day but we were making her get to the potty even though she said she didn't have to go. Today I was determined to let her have accidents so that she can learn to get herself to the potty but it was disastrous. Now we're back to just taking her every so often and then she goes. We went on our first outing tonight to the mall and she didn't have an accident but we took her to the potty three times whle there. All in all she's doing well and I'm really glad we did it. I just hope she gets over this fear she has of going in the potty.

One more on Dr. Jones

In looking for a picture and bio on Jordan's surgeon I found this article. We are so blessed and so thankful for the care Jordan recieves. I wanted to include his picture and tell you about him so that as you pray for Jordan you would pray for him. Each upcoming surgery I will plan to do this. I love praying for her doctors even beyond their time in the operating room with Jordan. I pray that they would be saved and that we would have some lasting influence on their salvation. Thanks for praying with us.

(OC Register)

Surgeon who turns toes into fingers joins UCI

July 23rd, 2008, 12:00 am · posted by Gary Robbins, science writer-editor

An award-winning microsurgeon who helped pioneer the process of turning patient’s toes into thumbs and fingers so they could overcome injury or deformity is joining UC Irvine as director of the university’s new Center for Hand and Upper Extremity Surgery.

Neil Jones was recruited from UCLA, where he created a similar center that became known worldwide for reconstructive microsurgery that’s done on hands, elbows, shoulders and wrists.

The 59-year-old Jones is one of the few surgeons in the world who has performed several hundred “toe-to-hand” transfers, and is regarded in the medical community as something of a wizard in treating very small children.

“Their blood vessels and nerves are so tiny you must wait until the child is large enough for you to join the vessels and use sutures,” says the Oxford-educated Jones, who has been listed in the Best Doctors in America database since 1992. The sutures are thinner than a human hair.

This photograph shows the hand of a 2-year-old boy who originally was missing four fingers and a thumb. Jones took two “second toes” — the ones next to the great toe — and constructed a thumb and a finger on the child’s hand so that he could “pinch and grasp.” (Click image to enlarge.)

“When you look at the patient’s foot you can’t tell there is anything abnormal other than the scar,” says Jones, whose operations take eight to 12 hours. Typically, the nerves grow back and the patient has very good sensation in his or her hand.

Jones also performs toe-to-hand transfers on adults. His patients have included everyone from a girl who went on to become a top gymnast to a young boy who is gaining a sense of normalcy after Jones transferred a toe to the child’s hand to serve as a finger.

“His mother said he was able to ride his tricycle and feed himself,” Jones says. “It’s hard to describe the feeling you get from that.”

Jones also treats other type of hand injuries and disorders, and his patients have included many celebrities, including actor Brad Pitt. He will work out of UCI Medical Center in Orange and is expected to expand his practice to Children’s Hospital of Orange County.

Latest with Dr. Jones

Today Jordan and I met with Dr. Jones. We love every one of our surgeons but I think I have to say Dr. Jones may be my favorite. He's British so he's a bit stoic but every once in a while you see a crack of a smile and a really sweet man behind that surgeon's mask. For any of you who have dealt extensively with surgeons you know they are their own breed. They are like machines, so highly skilled in such a specific area or expertise that there is hardly anything else - at least from the patient's perspective. I often find myself wondering what they are like at home with their wives and children and grandchildren. We are one of many patients to them but to us they are part of our story, part of our lives and the ones who are helping Jordan so much. They mean a lot to us. I often find myself vowing to crack the surgeons, to make them smile and show warmth and even laugh. With our sitution we've had the same surgeons for a while now for multiple surgeries so we get to see them fairly regularly. A while back I asked Dr. Jones to separate Jordan's toes (they were webbed together). He said there was no need, they were fully functional the way they were. I explained that while he is merely concerned with function I, the mother of my daughter, am concerned with form. He told me that they'd just grow back together anyway. I begged him to "humor me" and do it since it would only be a few extra minutes and a little snipping here and there. He actually chuckled a bit and agreed to do it but insisted they'd grow back. We are more than one year out from the surgery and every single time we see him he peeks at her toes to see if they've grown back together and every time I say "Ha! You might as well stop looking, it's been long enough and they have yet to grow back." I even jokingly told him once that he needed to say out loud, "Jennifer you were right. Her toes look wonderful and they indeed have not grown back." Today, as usual, I went to our appt with the plan of attack to make Dr. Jones smile. I didn't have to work very hard though because Jordan put on quite the show. As we were heading back to the room Jordan was marching herself down the hall (she gets quite full of herself when she has her pig tails in and now that she's even peeing in the potty she's larger than life). Dr. Jones didn't notice her and ran into her. She looked up at him with recognition and a look or horror on her face. She stared up at him as she stumbled around him and realized I was heading for a patient room and she started screaming "No Dr. Jones!!! No Dr. Jones!!!! Noooooooo!!!!" It was the funniest thing ever and guess what - it made Dr. Jones laugh a bit. She is so fearful of doctors now that we can hardly get her in the room much less near anyone in a white coat. She eventually warmed up to him today and did fine and we had a very nice visit with him.

Our appt was to discuss her next surgery. Here's a recap:
--- He will take bone from her fibia (outer, lower leg bone) and will pin it to the existing bone in her short/floppy thumb to make it a little longer and more stable. It won't bend but it will give her a pincer grasp on that hand, which she does not have currently.
--- The surgery, amazingly, will be outpatient unless there is a pain management issue. The surgery will probably be at CHOC and will be around six weeks from now.
--- She will have a cast on her leg and a cast on her arm. Ideally she'd have a splint of some sort to immobilize the thumb and protect the pins but the last time she had a hand/arm cast she got it off twice so he thinks she'll need a cast up above her elbow. Yes, another leg cast and an arm cast all at the same time - three weeks after getting her current leg cast off. YIKES.
--- If I'm understanding correctly, the leg cast would be on for six weeks and the hand/arm cast will be on for 6 weeks up to 3 months (same as the current leg cast - I guess three months is typical for a pin). This will be good timing so she will not spend the summer in casts. She'd be done by mid Spring.
--- A tough decision we need to make is which leg to take bone from. Shan and I really want it taken from the right leg since she already has so many scars on that one but I'm not sure what they'll say since she is supposed to be in a brace on her right foot for six months and also taking into consideration the fact that her right leg just came out of a three month cast. They may want to give that leg a break and use the left.

Okay a ton of details but I like putting it all on here so if anyone is curious you can go back and read it. It also helps me put things down clearly so it's together in my mind.

I am dying to post on our current potty training with Jordan but I just haven't had a chance. I plan to do it tomorrow or the next day so check back when you can. She's doing surprisingly well and I'm so thankful. She only had a few accidents all day today but she is really getting so much better.

Thanks for checking in - Happy New Year!

First Steps with Help

Surgery Follow-Up Pictures - preview before showing your kids

I am finally able to post a few shots of the new foot. I know that some people may have a hard time looking at them. I was hesitant to put these pictures on here and went back and forth but really thought that more than a few might find it interesting and no one who knows us has even been able to see this pin I'm talking about because it's covered by the cast. It is truly amazing to me that it is just sticking out of her foot. Weird huh? I have had a surprising amount of people offering to take the pin out...actually I've had many people offering someone else to take it out...Jenny Weber offered her brother's services (he's a general practitioner), Lindsey Veale suggested Darin Johnson (a surgical nurse), Tobi Thomas suggested her dad who is a firefighter, Sarah Cox suggested her husband because he's really good at medical things and my dad was at first saying he could probably do it until he saw the pictures. He has now offered to meet me there so he can be the one to go in with her when the doctor does it rather than me. We've decided that would probably be best. Shannon thinks it would be no problem to have someone take it out but I'm a little more nervous. He says he's fine with whatever. So the 23rd it is - my dad will meet us in L.A. early so we can have breakfast in their wonderful cafeteria (truly it's so nice, we love eating there) and then we'll go upstairs. I guess my dad will take her in and hold her while I wait outside. I'm so torn because I am abandoning her but at the same time I really have drawn this mental line and feel totally unable to do it. I'm being lame, I know. Regardless, I'm looking forward to breakfast with my dad and it'll be nice to have him help.

Outside the doctor's office with her new cast.

I thank God all the time for his answer to my (MANY) prayers begging Him to work out the details for us to go to UCLA. We love it and have SUCH confidence in her care there (keeping in mind that God is the ultimate surgeon and the one who decides every detail of every surgery - talk about being in good hands!!!).

Here's that nasty pin. Next poll I'm taking is whether or not I should keep it in her keepsake box...??? Any thoughts?? Hey - most parents keep their kids teeth right? Not that different.

What a long morning! She was out cold in the car. We left home at 5:45 and didn't get back home until 5:30 that night. We had so much going on that day with appointments and things that it was SUCH a long day for both of us.
I love this picture - look at her pretty lips. Her surgeon did a great job on her lip it is so full and beautiful!

This is the bigget scar from this surgery. It goes up pretty high. I was really surprised but glad I didn't know before hand. I am really amazed at the fact that her foot now has an arch to it. Where you can see an arch there she used to have a rounded bottom like a rocking chair (hence the term Rocker Bottom Foot). Her foot looks so much better. She still has a lot of fatty tissue and if that doesn't go down her plastic surgeon said he would want to lipo it out during her next face surgery (around her third birthday). You know you live in Orange County when...your three year old gets liposuction! Ha. That's funny. The extra tissue/fat on the foot will make it possible for her to comfortably wear the same size shoes and also it will help make her foot look more "normal." We are not obsessed by that but want to do what we can for her and it sounds pretty non-invasive, minor in the scheme of things.

Brief Update

I am having some major technical challenges trying to get this blog post done. I am unable to post pictures right now because of our issues. Sorry - check back tomorrow night for some hopefully.

I am so tired and still have a few things to do before going to bed so I'll make it short.

My dear friend, Sarah Cox, took such great care of Noah for us while we went. She had him over last night for his first "sleepover" and then kept him all day today even while she wasn't feeling well. (Much more on this story later) It was weird going to an appt without Noah and really reminded me that he is carted around with us on appts constantly. What a champ! Jordan was sad without him today and confused. She kept looking over where his car seat usually is and saying, "Noah? No Noah? Noah sleeping Ivy's house? Why?"

Our appt was at 8:30 but I thought it was at 8:15 so I planned to get there by 8:00. We left at 5:45 and hit no traffic, making it in record time (other than our surgery trip at 3:00 a.m.). Jordan and I got there at 7:00 sharp. We ate donuts and I had Starbucks in the cafeteria. It's a familiar place and I actually love going there. We had a really fun morning. We chatted in the waiting room with other families who are so thankful for Dr. Oppenheim.

I will preface this by telling you that Jordan is TOTALLY freaked out by doctors and nurses. This is the understatement of the year. The nurse tries to take her temp at the pediatrician's office and Jordan screams as though she is being burned alive - honestly. It scares people but I don't know how to stop her from freaking out. Imagine when the guy today turned on the saw. You can imagine the blood curdling scream. The guy almost dropped the saw. I'm serious. He closed the door and started to cut the cast and she was shoving at him, clawing at me, screaming, and I'm starting to freak out wondering if it's really hurting her. He says no but by her fighting I wasn't so sure. It took all I had to hold her down. We were all out of breath by the end. Then he can't get it off so he has to use these giant clamp scissor things to pry it open. She's starts up again. Then when I saw what it looked like I had one of those moments where you know that you have two choices - snap out of it and get it together or lose it completely. I am really very strong with this stuff and have no problem usually holding her down etc. It's for the greater good so it's worth it to me. Today was different somehow. I really almost said, "Forget it. We're coming back when someone else can do this because I'm done." I asked the resident if someone else could hold her leg when they take the pin out and this guy (younger than me probably with no kids) looked at me like I was being dramatic. The doctor decided to x-ray before taking the pin out. Yet another thing Jordan "loves." It took two x-ray techs and me to hold her down for that one. We all came out sweating and everyone was staring at us (docs and staff). The doctor came in and said that the surgery results weren't as good as he would like but he does see improvement (BIG bummer!). The x-ray before surgery looks close to the same as now to me but she for sure has an arch to her foot now that she didn't have before. He didn't seem all that pleased but was pointing out the positives (the foot arch and a small improvement in one of the bones). Either way he did his best (which is darn good) and it needed to be done regardless of the outcome. He opted to put a short leg walking cast on but he left the pin in for two more weeks. He said that I can pull the pin out (yeah right) or I can make an appt for his resident to do it. He'll leave this short cast on for four weeks after that (total of six more weeks) then she'll wear a brace for six months. I really don't want to drive up there, wait 2 hours to see the resident to do something that can be done at home. It's totally not a big deal apparently. Everyone kept showing me how to loosen it and pull it out. The doc said to find someone to pull it out for me if I can't do it and don't want to come. He was chuckling that I thought he was crazy to think I could pull it out myself. Anyone want to give it a shot? Seriously? Two weeks from today we can take that sucker out. Let me know if you know anyone who would do it.

For some reason today was a challenge to me more than any other day, even surgery days. I think as she is getting older, responding more to pain, stress, etc. it's getting harder for me. It's easy to get discouraged as I look ahead to more and more surgeries. I feel so bad for her but there isn't anything I can do. It's tiring to hold her down again and again while she screams. After the cast removal (the saw part) today she was so freaked out and I was totally stressed so I started singing Jesus Loves You and reminding her of God's love for her and the fact that He never leaves us or forsakes us and that the proof of that love is shown in the sacrifice of his own son for us. I said, "Just think - if God loves us enough to take away our sins with his own boy don't you think he loves us enough to be with us when things are scary and hard?" As I was talking to her about God's love and his prescence and how thankful we were to be for all He does she totally calmed and not surprisingly so did I. I prayed with her and honestly the rest of the appt went pretty well. She let the cast guy (the saw man) put a new cast on her. Even though she was still freaked she didn't scream. He shut the doors just incase. :) :)

One really funny quick thing...as we were leaving the office we were strollering past the reception desk and Jordan said so loudly with such conviction, "THANK GOD!!!" A lady whipped her head around and said, "Did she just say what I think she said??!" I repeated Jordan, "Thank God." That woman was cracking up. The whole front office staff started laughing. Jordan was still pretty serious and really meant it - THANK GOD!!!! She was so glad to be leaving that office and I can't blame her.

She's not putting weight on her leg tonight and just cries saying it hurts. Pray for that. I have to get to bed but will post pics when I can.

One Week...

One week from this coming Tuesday Jordan has an appt to get her foot checked. At 8:30 Tuesday morning (Dec 9th) they should take the cast off, x-ray the foot and take the pin out. If all goes according to plan they will give her a short leg cast and one of those little velcro shoe things over the cast to walk on. Yay! Oh I am totally counting the days and it feels like this week will be forever as we wait. Shan and I were saying the other day how strange it is that we've already forgotten what it's like to see her walking around. This girl would seriously strut her stuff, arms swinging, marching all around doing anything but sitting still. We've gotten used to seeing her sitting or laying on the couch. Baths will also be so much easier and more fun for her. She'll still be in the baby tub but at least we can keep a little water in it for her to be warm. Now it's sponge baths in the baby tub.
I'll be sure to post pictures...I'm seriously wondering how I'm going to hold her foot in the office while the doc pulls that pin out. Apparently it's no big deal...he just pulls out the pin that is holding bones together...and expects me to hold her during it. I am wondering if I should make Noah leave the room or if I should let him watch. Cast your votes everyone....let me know what you think. :)

Reality is setting in...

It seems Jordan has tired of sitting on the couch while the world goes by. It's really pretty sad to see. She just seems tired of sitting and wants Mommy and Daddy to hold her all the time. She went two days with no napping - she cried for two hours both days for Mommy and then last night woke up at 3:30 crying for me. She wouldn't stop unless I held her and walked around. Finally I had to put her down and let her cry. I wonder if what she feels when she has to watch the other kids play and run around. I wonder what goes through her mind when I leave the room and she cries until her voice is hoarse.

Another thing I've noticed lately is her looking at her own hands. I saw her last week looking at her right hand (more severely affected) and turning it over, opening and closing her fingers etc. I wondered what she was thinking and if she was beginning to notice it doesn't look like ours. The other day picking up Noah from preschool a little girl said that Jordan's hand looked funny. Right away Jordan looked at her hand. I touched her hand and showed the girl and said, "It is a really cute hand isn't it? Look at it, it looks like a cute little glove is on there. It also works really well. She can do anything with it that you can. God made her that that way just like he made your hands the way they are. We are all different." I have no idea the "right" response when kids ask or say things like that. It's innocent and they are just curious but for Jordan's sake I want to respond appropriately. I love every inch of her exactly the way she is and I want her to know that in my responses as she grows.

My aunt sent $5 for each kid this week so tonight we had a big night out at Wal-Mart letting the kids pick out whatever they wanted to buy with their money. Jordan picked out a little set of horses - tiny little plastic horses in a pink case. She loves them. Noah wrestled with such a huge decision and was a wreck in the toy aisle unable to decide on ONE toy. He'd pick one then another then another and was totally frozen with indecision. It was so funny. He ended up with a hauler truck that opens up into a helicopter pad. Pretty cool. After that we went in search of one of those cheap quarter riding toys that is typically outside stores. Apparently San Clemente thought they were an eye sore because we looked all over and couldn't find one. They took them out! Second choice was to let the kids ride in the car shopping carts at Albertson's while we wandered around the grocery store. What a cheap family date night! Thanks Aunt Edna and Uncle Frank from North Carolina. You are so thoughtful and so kind. What a wonderful outing and such a distraction.

We have friends coming in town to stay at our house this weekend so hopefully that'll be good for Jordan to have people to play with and be entertained by. I am going work on her crawling and see if we can't get her moving around a bit without standing up.

Her cast change appt is for December 9th - one week early. Yay! He'll put on a short cast that she can walk in for another six weeks (mid to late January) then a brace for six months. He said on Monday that he doesn't expect it to function a whole lot better than before but it will look more normal and it was something that couldn't be left the way it was. She would eventually have been unable to walk. I'll just be glad when she is walking again. We'll call her hand surgeon in January to schedule her pre-op stuff for the next surgery on her thumb. Hopefully we can get that one done late winter/early spring. For that he'll take bone from her leg and creat a longer, more stable thumb on her left hand. Another pin to keep things in place and another cast but at least she'll be able to move around more.

Thanks for checking in - I'll post more pictures soon.

Jen

Pray Please

I wanted to remind you of a family I've posted about several times before. The Levasheff Family - Drake, Christina and Jessie lost their 2 year old son to Krabbe Disease one year ago tomorrow. Please pray for them as you go about your day that their eyes would not be on things of this world but on Christ and His redeeming work in their lives. If you would like to view their blog you can find it at:

http://www.storyofjudson.com/christina

I highly recommend subscribing to it and reading her posts regularly and then leaving scripture and notes of encouragement for her as she struggles through one of the hardest things in this life.