Tuesday, December 30, 2008

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!

Saturday, December 13, 2008

Friday, December 12, 2008

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.

Tuesday, December 09, 2008

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.

Saturday, November 29, 2008

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. :)

Friday, November 14, 2008

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

Thursday, November 06, 2008

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.

Monday, November 03, 2008

Mommy/Daughter Date Night

Sprite


Sprite

Yes, more Sprite!


Notice the jewelery and glasses - see the next post for details.



Since it was just Jordan and I home tonight I decided to take us out for a girls' date night. It's really so tough being home with her right now so I told her we were going on a date and she loved the idea. The whole way in the car she kept saying "Date!" "Date!"
I wanted a place outdoors where we could walk around (keeping her happy in her chair with her leg up), eat, and browse. I took her to the Aliso Veijo Town Center. We ate at Fatburger while listening to the jukebox and Jordan saying over and over, "Too loud!" She happily slurped down her Sprite and ate straight ketchup with her hands (her favorite meal). We walked to see the fountain where I let her throw pennies in and she would crack up so loud every time. It was hilarious. After that we walked to Barnes and Noble to read books in the kids section. She LOVES books and we found a small Christian book section for kids and read some great books until she started being super silly. She was cracking up so loudly we finally headed out. I couldn't stop laughing and it was more of the same on the way home listening to her try to sing a mix of If You're Happy and You Know it and Head, Shoulders, Knees and Toes.
What an addition to our family she is. As voting day approaches I think more and more about a quote I saw on a video clip of Obama. I'm not quoting exactly but he basically said that he is going to raise his daughters to make good decisions but he doesn't want them to pay for a mistake they make by having to raise a child/have a baby. He was making a statement for abortion as a solution to a mistake and having a baby as punishment for that mistake. I look at Jordan and can't imagine how anyone can vote for a man who sees a baby, a child, a God given life as a punishment to avoid once you've made a mistake. "Don't worry daughters, if you make a mistake you won't have to be accountable for it or responsible - we'll just kill it so it doesn't interfere with your life." Children are a precious, precious gift from God and are to be considered arrows in the hands of warriors...blessed is the man whose quiver is full of them. It breaks my heart that if Obama wins this election tomorrow women in a challenging situation may take the "easy" way out without fully understanding what they are throwing away.
I have to remind all of you reading this that we were offered again and again the opportunity to kill Jordan. We were tired of hearing them tell us they'd kill her if we wanted them to so we finally asked them to stop offering. We weren't considering that as an option. Look at her now and think about how much she means to so many of you reading this.

Blessings from the Williams Family!

Brittney "Bitnee" teaching Jordan how to use the Leapster

Bree, Brooke and Brittney in front of their banner that is taped to the wall in front of Jordan's spot on the couch so she will think of them and smile.

This is SUCH a cute picture of Bree and Jordan.


Brittney, Jordan, Bree, and Brooke




I had SUCH a nice surprise today with some special visitors...
Shannon took Noah to his parents house until tomorrow night when he returns from school (as usual on Mondays/Tuesdays only typically Noah is here with me). My mom was also gone today visiting a friend overnight so it was just Jordan and I here. She was napping and I was making phone calls, setting up some appointments and catching up on emails. Christiane Williams (the director of our church's Navigating Motherhood ministry) and her three girls came over.
Not only did they bring a dinner and homemade bread (her daughters made the bread) but they came with their arms FULL of gifts - precious, hand picked gifts that were once their prized possessions. They brought more stuff for Jordan and Noah than I can list here but I'll share a few things. First they brought in a giant rolled up banner that was tied so pretty with a green string (my favorite color). It was a handmade banner with pictures they drew, pictures of themselves in funny glasses and writing saying "We hope we make you smile!" They even included Noah in one note considering the fact that he may be feeling left out. They brought a special bag for him as well with really fun things they picked for him. They brought things they specifically remembered Jordan liking when she was at their house...jewlery, a Dora jewelery box, Dora sunglasses, a baby doll, and even a stuffed rabbit with a voice recording one of them had when she was little (was that Brooke Christiane??). I have been struggling to keep Jordan occupied on the couch so it was also a GIANT blessing to get a Leapster from the girls too. I still can't believe we have a Leapster! A neighbor got one recently and when I saw the price I knew we wouldn't be getting one any time soon but thought how fun it would be for the kids and here is one from the Williams family they weren't using and wanted us to have. Bree also chose a few special games of hers that she thought Jordan and Noah would be able to use (learning games) that she has outgrown. I could hardly get Jordan to put it down to go out with me tonight. Funny that something so simple now makes it a challenge to get her off the couch when I've been struggling to keep her on it. :) :)
Beyond all the wonderful gifts they brought it was the thought and the sentiment that went into it that really touches me. I am honestly sitting here shocked at their love for Jordan (and Noah) and the fact that today they lived out Phillipians 2:3-4 that says to do nothing out of selfishness (selfish or vain conceit) but consider others better than yourself. This was one of Noah's past memory verses and one that is very important to me as I'm raising him to be someone who truly considers others and always looks to their best interest. What a living example the Williams family is. Honestly, they are always the first to sacrifice for others - their money, their time, their resources, their talents - everything. They would deny it all if asked and humbly insist it was no big deal. I can't thank you girls (and you too Jess) for your thoughtfulness, your time, your treasures and most of all your example to my children of what it means to serve each other. This came on the perfect day at just the right time!
Oh and one more thing - through all the gifts and them even holding her on their laps she had a dirty diaper and they didn't once mention it and it was bad. They are so sweet! :) :) :)
Thank you!!!!!!

Sunday, November 02, 2008

Back to her spunky self!

Yes - this is the same girl who just had a major operation on her foot and has only been home from the hospital for a few days. She's crazy and hyper and loves to play. Keeping her sitting on a couch with her leg elevated is IMPOSSIBLE!


We had my parents and Shan's parents over for dinner today. This is my dad holding Jordan.


Jordan with her Papa.


Jordan and Grandma playing with "hats" Grandma liked the bunny ears and of course Jordan liked the princess crown - go figure.




Noah loves Jordan's chair and is acutally really good at driving it around. He rides around the house all day and then loads up his toys and pushes them around. My dad says it's a matter of time before he figures out how to hook the dogs to it so they can pull him around the block.
I have a great video of Jordan sliding along the ground trying to crawl. I'll post it soon.
It was GREAT to be back at church this morning and so good having my mom go with us and seeing our friends again. It'll be interesting to see how the coming weeks will shape up.
Thanks for checking in.




Friday, October 31, 2008

Home again, home again...

Here are a few pictures from recovery after surgery. We were in there about three hours so we had some time to take turns seeing her. Staci came to visit so she got to sit in there a bit and actually got some really great pictures I'll post when I get them (hint hint Staci to email them).


This was her recovery nurse who was really great. She and another nurse took special care of Jordan finding her special stuffed animals, allowing us to break the rules by having more than just mom in there. At this point I was getting so tired with no sleep and no food and having others in to visit was such a blessing. They took x-rays of her foot to double check the position, they took blood to check her levels which kept coming out low. They were all really so great to us.



I love this picture of Jordan and her Papa. She may be a Mama's girl but she sure does love her Papa, Pop Pop and Grandpa. She knows she has them wrapped around her finger. Papa (Shan's dad) has been at all her surgeries and it's hard to imagine a hospital stay without him cracking us up all day.



Jordan was really unhappy most of the time in the hospital, not eating, not drinking, not caring about cartoons and really unwilling to even wear her princess costume for the Halloween festivities. Finally we made her put on her costume along with Noah and she began to brighten up a bit. We wheeled them to the Child Life room for a magic show and some fun.


Noah now thinks this hospital stuff is really fun! Cartoons, popsicles and toys all while kicking back in an electric bed that moves up and down.

Here's the wonderful magician! He was SO funny and the kids loved him. He was making them laugh and drawing all of them out so well. There were so many very, very sick kids. You really wouldn't believe it. Each one of us should thank God for our children's health. One teenage boy sitting behind us kept smiling at Jordan and she was just batting her eyelashes at him. We saw him later in the hall and he said with such a sweet smile, "Hi Jordan!" Oh my heart breaks for these kids. Honestly these are the sickest kids who many of which spend a great deal of their childhoods living in the hospital. Their parents have to work and take care of siblings so much of their time is spent alone or with nurses. It's really heartbreaking and so hard to leave them there. I also saw a little girl who just had her palate repaired and had previously had her cleft lip repaired. The fresh air, the play, the time laughing around other kids and the magician really helped Jordan turn a corner. It's amazing - she was almost back to her old self after the Halloween outing. I think some day I want to volunteer or work as a Child Life Specialist. What a job that would be.

There wasn't anything they could do for Jordan at the hospital that we couldn't do at home so we got to come home. Jordan is still VERY clingy to Mama but is really getting back to herself more and more. Here's a picture of her being silly. The real challenge is making her sit. She isn't allowed to put any weight on her leg/foot yet all she wants to do is walk around. She is too heavy with the cast on and it's too awkward for me to carry around so we were planning on using a stroller. The therapist told us today that the stroller won't work for a while because she needs to keep her leg elevated so she ordered a pediatric wheelchair for Jordan. It will be covered by our insurance and should really help. She tried to teach Jordan to use a walker to hop on her good leg but the cast is too long so she isn't able to do it. The Physical Therapist is concernced that Jordan's progress with walking will not be worth much if she doesn't walk for six weeks. There isn't much that can be done about it though. The wheelchair should be delivered tomorrow and I can't wait so she can get around and we can get out of this house.


I was and am more than exhuasted tonight but thankfully Shan rallied and convinced us to take the kids around the block trick or treating. I was so resistant but now I'm glad we went. My mom liked being a part of it and the kids had a good time. Noah wore the knight costume again and Jordan was his princess.


She was on her pain medication so she was perfectly content sitting in the stroller eating her way around the block as people gave her candy. You can see in this picture how her foot needs to be elevated. It isn't all that comfortable being scrunched down like that especially once she's off the meds. :) We'll hold on to the stroller incase the wheelchair doesn't get delivered and then to use once we return the chair.

Okay this post is long enough. We are going to bed. We promised the kids whatever they wanted tomorrow. We'll be having M&M pancakes (using Halloween candy) and we will be out in the fresh air as long as it's warm enough. I can't wait to spend the day doing normal family things with the kids and with Shan and my mom. Thank you all SO much for praying and for sending us messages. What a gift you all are.
For you Compass Bible Church friends I am really hoping to make it to church on Sunday. She will probably still be on pain medication so I would think she might just sit through the service without needing to go to Kids Ministry which I'm not sure if we can put her in yet until we get her used to not bearing weight on that leg.
Thank you again!!!!!
Much love,
Jen




Thursday, October 30, 2008

Final Update for Today

Okay I only have a few minutes...again. Jordan just wants Mama to hold her and she's so upset.

Surgery was successful and the doctor said he did above and beyond what could be done.

Her blood count seems to be a little low so they had to draw blood and test it again. VERY stressful and hard on her and she's pretty agitated right now. Pray for her to be calm and sleep tonight.

All is as expected and the room is VERY nice and private with our own shower and bathroom. Yay!

Shan will be going home soon and my mom will be here so I won't post again until tomorrow but you can leave a voicemail on my cell if you want. I'll try to call if I can get her to calm down.

Please Pray for a Bed!

Hi everyone! I am updating on Jen's behalf. I just got a text from her that said that Jordan is "totally fine." She asked everyone to pray for a bed for Jordan. They are currently stuck in recovery until a bed opens up for sweet Jordan.

Thanks for your prayers for Jordan's surgery. Please continue to lift up the situation with the bed, that Jordan would rest comfortably tonight and for a quick and easy healing process.

Megan Seager

Romans 12:12
Be joyful in hope, patient in affliction, faithful in prayer.

She's almost done!

Okay the doctor called us and is done with the work on her foot. The assistant is closing her up and they'll call when she's in recovery and we can see her. He said the surgery went well but was quite difficult. The tissue around the tendons and the tendons themselves were really thick and very tough to get through. They had several people pulling her foot in different directions trying to get it in place. There was minimal blood loss and they made the two hour tourniquet time limit. He said we can expect to go home Sunday or Monday but possibly Saturday, for sure we're not going home tomorrow.
The battery is dying so I have to go but I'll update once we see her in recovery.

She's with the Surgeons

Grandma playing with Jordan's dress up doll kit we saved from her birthday.


Jordan totally drunk having a great time!!!

Still in the "hold me" stage this morning, wanting Mama.


Here's a quick update. We don't have much to report but I'll update anyway.
We left our house at 3:15 and got here with PLENTY of time. Honestly I can't figure out why they need us here so early.
When we got here she really began to freak out, especially when we got to the pre-op room and put her on the bed. She only wanted to be held and kept crying but eventually she calmed down. Shan's parents got here and got to spend some time with her too which was nice. My prayer was

really for her to get a medication before having to be taken from us so she wouldn't cry and then be more afraid of surgery in the future. They were so kind and gave her Valium. She was totally drunk and it was hilarious. She was completely loopy with her tongue sticking out and her laughing. :) I was also able to ask them for a different pain medication than before. Our pediatrician recommended Lortab for her rather than Codeine. We will see what they say.
One concern was whether the surgeon was doing the actual surgery or his resident. The resident kept talking in first person about what he was going to do and even put his own initials on the leg. The head surgeon never even came to talk to us. I am glad Shan's mom was there with me because both of us were very concerned but the surgical nurse assured us that Dr. Oppenheim is, indeed, the one doing the surgery. The resident will only assist. I'm praying that is true.

Also, one really fun story - as we were here eating we saw the social worker from the Pediatric Intensive Care Unit. She totally remembered us from a year ago and wants to come by to visit us in our room. Then I was walking down the hall and saw the head nurse from the PICU from last year too. She also remembered us and we hugged and had a great conversation about last year and the blessing they were to us. I love UCLA and feel so at home here.

Please keep praying as the surgeons work for skill and wisdom and for Jordan as she wakes up. We just want to see her and be sure she is okay.

Thank you for checking. We'll write more as soon as we know. They took her pretty close to 7:30/7:45 and it should take two to two and half hours.

Jen

Sleep Deprivation

What a way to start the day - we slept well last night...for about 45 minutes. Jordan woke up screaming like she had a bad dream and then wouldn't let me put her back in bed, she was freaking out so I brought her in bed with us where she played and kicked her feet etc. for about and hour and a half. Finally Shan at least went to bed in Noah's room but I tried for another while to get her to sleep. I eventually put her in her bed and she went back to sleep. So basically that means we slept from 11:00 to 11:50 then we were up until 1:30 and I got up to get dressed at 2:00. Ugg!!
Oh well. This is the day that Lord hath made, I will rejoice and be glad in it!
We are now off to the hospital.
Watch for updates!
Thanks to the hundred or so emails and Facebook notes we've already received that you are praying. What a gift!

Tuesday, October 28, 2008

Surgery Week Day One

I saw in my stat counter that the number of people viewing the blog is up to nearly 80 in a day. For all of you faithful bloggers I thought I'd post some pictures. It's so funny that during the week before all of our surgeries we end up having the best family times. I wonder if it's due to the fact that we are just sitting around with nothing to do except spend time together. It says something for quality time without things planned. It's so weird not to have something to do. We did go to the doctor yesterday to get the paperwork for the surgery done and to get her cleared for surgery by her pediatrician. I was SUPER paranoid about germs as we were hearing kids coughing and hacking, seeing them all looking miserable as they were there for a sick visit. Oh well- it's in God's hands. Yesterday we made pumpkin crafts that my cousin sent, the kids played all day (literally) with a diaper box as a slide in the house, in the yard, on the couch, etc. They love this thing and cracked up all day with it. We also go to walk around the block last night with Jordan in her new borrowed stroller. Our friends, the Travaglias, let us borrow this wonderful, lightweight stroller for the next three months while Jordan will be in a cast. What a blessing that will be. She already loves it and actually wanted to ride in it around the block last night instead of walking.
I will post again tomorrow afternoon/evening with specifics on the surgery and anything else I have to share. Thanks for checking in!




More Fun Pictures




Look at her leg straight up in the air - it was hilarious. She kept nearly flipping right over herself.




Jordan is a hat girl and anything qualifies as a hat...underwear, pull-ups, bowls, pants, etc.



We kicked off this week by watching Polar Express (Noah's favorite) and eating popcorn.


Monday, October 27, 2008

SURGERY WEEK OCT 2008!!!!
















Another "surgery week" is here and we are making the most of being home. I was literally sitting on the couch on Saturday trying to figure out what to make for crafts to make this week at home special and the mailman delivered a package. It was from my cousin in Texas. She and her daughter sent us a package with materials for crafts and fun things for Halloween that will work perfectly for this week. God sure delivers is even the smallest ways.
At Navigating Motherhood last week a woman spoke about being intentional with our traditions and creating a heritage for our family. It made me realize that as the kids might tend to focus on the fact that they can't go to the park, to church or even play with their friends the week before Jordan's surgeries, I want to make it a fun time of celebrating. Celebration is truly in the air. They are running around playing with their balloons and with each other. I'll post more pictures this week as we have our fun time.
We have one last doctor's appt today for Jordan to be cleared for surgery and barring any illness or problem with the surgeon we are on for Thursday. Shan's sister, Vel, and two of her girls are coming Wednesday to spend the night and take Noah to his first preschool field trip to the pumpkin patch on Thursday. They should have a great time and it's yet another thing to be excited about for him.
Thanks for checking in!

Friday, October 24, 2008

God Provides Again

I started making my phone calls in the car on the way to church this morning (where I serve in a ministry for young moms) and before I even reached church the cardiologist situation was handled. Our case manager said she'd approve it as soon as it came across her desk and the surgeon's office said they'd fax the request "urgent" right away. Just to be one step ahead I called the cardiologist's office to see if they would be willing to make an appt for Jordan without authorization (big no no typically). It ended up that the girl who answered (the office manager) is someone who went to high school with Shannon (Shan's dad was her music teacher too). She put us in no problem even without the authorization and said not to worry. We are taking her in at 4:30 today and she's putting a packet together for me to keep just in case this comes up again. After this and then her history and physical on Monday to clear her for surgery we should be all set unless of course she gets sick. The hospital called to today to collect our money but I opted to wait until we get there to pay because we all know it's an uphill battle to get a refund on hospital bills. :) We'll just wait and see to be sure it's a go with all the ups and downs we've had so far.

Prayer Request

We got a message from the surgeon's office last night that he wants an echocardiogram done on Jordan's heart before surgery. When she was born she had a tiny hole in her heart (Patent Foramen Ovale - PFO) which is very common and closes by itself. At one year we rechecked and it was closed. Since then we've had two surgeries with no problem but for some reason the doctor wants it rechecked. ???? It can't possibly open up again (the hole) so I'm confused. Pray that we can get a referral to go through and then get in to see the cardiologist before Thursday. Referrals usually take days and I don't really know why insurance would cover it anyway since it's been cleared. Pray for the details.
Also, it seems Jordan has a minor cold right now with a stuffy/nose and she's quite irritable. Thankfully it's now and not next week. Pray for her health for surgery and for me to trust that the sugery date will be what God has planned - I want to be content no matter the circumstances.
Thanks and have a great weekend friends!!!

Tuesday, October 21, 2008

The Woodward Family

We Love You Woodwards!

Five Years and Counting (is that right Stac??)

Go Trojans! "Hey wait is that Nick Lachey over there??!!!"
(inside joke ha ha)

Our First Pregnancy Together with Noah and Reese

Gabe's First Olympic Trials in Long Beach
(yes he went once and came VERY close to going a second time this past Summer in Omaha)

I wanted to post a couple tributes to my closest friends. I'll start with Staci Woodward since I just got some really great pictures from her today.

Staci and I met at Marriage Builders, a young marrieds Bible study through our church. We met close to five years ago. I remember Staci saying that she saw me the first night and said, "I want to be friends with that girl" and I felt the same way. Our husbands got along right away with Gabe being gregarious and outgoing and Shannon being milder and a bit more reserved. They have grown closer over the years as Staci and I have alongside them.

We've gone through so many major milestones together since becoming friends. We decided we wanted to get pregnant together - such pressure. She got pregnant first and I died thinking she was leaving me behind...two weeks later I was pregnant. We've cheered Gabe on as he trained hard, eventually making it to the olympics winning a bronze medal. We've had babies together, learned how to schedule our infants' naps, nurse and train their hearts together. Looking back over our friendship I'm so thankful to have shared all these fun times together. Staci promises that with her next baby I can be her labor coach (along with Gabe of course) pushing her along without pain medication. We will see how that goes. That for sure will be another post. :)

Staci is someone who is everyone's friend - she makes every person in the room feel special. Everywhere I go someone knows her. In fact I was just at church last week and met a new couple who of course know Staci. She is the encourager yet also the gentle corrector. She is a wealth of information and the most generous person I know. Every time she visits (they moved to Bakersfield a couple years ago) she brings me fun little gifts, books that I can borrow or keep that she thought I might like, fun lotions and soaps, anything she sees that she thinks I might like. Staci is also all heart. I remember not wanting to call her when we first found out Jordan had some major problems because I knew she'd be devastated. She was and she just cried and cried on the phone, completely wrecked. When I was having Jordan the Woodwards came to our house to get things ready for us since we weren't prepared a month early. She brought her bassinet, put it together and cleaned the house. She kept Noah and brought him to see us each day. When Jordan was in the ICU in L.A. for a week Staci (along with Megan Seager) gathered gift cards from local restuarants for us (all my favorites of course because she knows me so well), she brought me new clothes from Target, a pair of shoes, and small items she knew I might need or just want. She dropped everything and came as always.

She and Gabe love Shannon and I enough to be here for us during the good times and bad - they love us enough to speak biblical truth to us challenging us to grow in areas we are lacking. I know the post is about Staci but I can't help but note my appreciation for Gabe's relentless persistence and dedication to our spiritual growth. As I wrestled through understanding election and predestination Gabe wouldn't give up. He challenged me, showed me scripture, gave me things to read and then hashed through it some more with me. I'm so thankful.

Staci has helped me become a better wife, caring for Shannon and growing in the area of homemaking, finding joy in hospitality. She has helped me become a better cook and baker, a better decorator and a more stylish dresser.

I could go on all day. I am so thankful for her in my life and so blessed to call her my friend. Through distance and distractions I pray that our friendship grows stronger over the years to come. I pray that Gabe and Shan continue to grow closer over time too.

Thanks Woodwards for being our friends!

Pumpkin Patch



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