Jordan JOY

Surgery Update

2010-10-11T20:12:00.000-07:00

One more surgery down. As a quick recap...we usually visit our specialists every summer to check in and this summer I expected nothing to come of it. When we saw her orthopaedic surgeon he surprised us by saying that she needed a surgery right away to prevent her tendons from causing her surgery to be more difficult next year. The tendons on top of the her foot are pulling up on the under side of the foot.

We scheduled it for Oct 1st thinking we'd then have several weeks before the baby was born.

My doctor found at 33 weeks that I was in pre-term labor and put me on bed rest and medication. I was on bed rest until the day of her surgery which was 37 weeks. I still needed to continue with meds and rest though so that I could get her settled in school afterward and have a little time to figure out how to take care of her. I'm now 38 1/2 weeks and I've stopped progressing. Go figure! :)

The best thing is that her surgery went well. He cut the tendons on the top of the foot and pinned her big toe in place. She'll be off her foot for six weeks and we'll go back three weeks post-op to check the pin, and change the cast. The third day after surgery we saw that the pin is coming up but our doc said to just cover it up and leave it. We are managing fine with the cast although it's tiring for me, especially after being in bed for six weeks. I'm curious how it'll work once the baby arrives.

This surgery was harder than in the past because she's older and more aware. It was easier when she was younger and I knew that the understanding wasn't there. Also, as the years go on we grow to know her as her own person with feelings and a mind of her own. Another thing that is challenging is ironically the fact that we aren't in the midst of constant surgeries and therapy. We've had 18 months to just enjoy her as a typical kid. It was nice to have these things behind us but then to realize they aren't completely behind us or her is difficult. Thankfully she handled it well and wasn't in any pain after the first night. She thinks it was a little fun even. She crawls all over the house and is so content regardless of how long she has to sit.

On the way to UCLA at 5:30 Oct 1st (the day after her 4th birthday). We took Noah out of school to go with us (yes, he's in Kindergarten already!).

Waiting....

You can see how her toes pull up. If you look back through the archives to when she was born it's crazy to see her foot from then to now. It was completely flush with her leg and her toes were attached to her leg.

This is our brilliant surgeon, Dr. William Oppenheim. It's been a long road getting insurance to allow us to see him. We're so thankful for him.

Heading in for surgery...gotta love that anti-anxiety med they give.

I had to capture a picture of this one. After every surgery as she's waking up she is mesmerized by the oxygen monitor. It's really funny.

I love this one. This is after she's awake and I finally feel relieved that she is comfortable and her happy self again. This is usually when I breathe that sigh of relief after every surgery.

She's trying to give a thumbs up but only manages to get it halfway up.

Usually they let Noah in when she's recovering but this time they didn't so he was super excited to see her when she was finished. Shannon and Noah were waiting for the car and when he saw her come out he ran to her so excited and kept hugging her. It was SO sweet!

36 Weeks

2010-09-23T19:47:00.000-07:00

Tomorrow I am 36 weeks along in my pregnancy.
I went to the doctor this past week again and she said that I'm now nearly fully effaced, the baby's head is at a zero station (fully in place) and I'm still dilated 1 cm. I'm taking Terbutaline twice a day and I'm still on modified bed rest. I've been driving the kids to school once or twice a week and I've, for the most part, rested otherwise. My labor/delivery bag is packed. My hospital bag is packed. The baby's bag is packed. Anytime I leave the house to drive the kids to school I make sure I've showered and I'm dressed because I find myself nervous that I'll go into labor while away from home and won't be able to make it back to get "ready" for labor. A girl needs her hair washed and her nails painted - can't we all agree on that?? Funny.

I've spent a month trying not to have this baby and I am still not wanting her to come just yet but at the same time I want to get excited, to nest, to anticipate her arrival with busy-ness and preparations. She continues to be nameless at this point too. We've decided against our first choice, Charlotte (Charly) so we've gone back to the drawing board and I'm just contentedly praying for God's will to be revealed. I think of Psalm 139...I'll copy the entire Psalm another time but wanted to highlight this section:
"All the days ordained for me were written in your book before one of them came to be."
I know that God has a name chosen especially for her with a labor story all her own in His perfect timing, His perfect will.
That Psalm was a stronghold for me four years ago, nearly to the day, as I was preparing for Jordan's delivery. I was SO full of uncertainty, wondering what she would be like, what life would hold for her and for us as a family. It was a time of sadness mixed with growing joy as I grew in my understanding of God's character...His sovereignty, His love, His grace, His rule over us as people who exist to glorify HIM and not ourselves.

It's such a strange mix of feelings approaching Jordan's birthday while at the same time anticipating the arrival of her sister and yet preparing for another surgery for her at the same time.

Her surgery has been approved and is set for October 1st. She had her pre-op appt today combined with her four year old check up and everything appears to be set for next week. Of course God only knows what the next week will hold but I know that I'm praying to keep this little sister inside until after Jordan's sugery because I couldn't bear to miss it and although she adores her daddy there is nothing like having Mommy there for her surgeries. They've become so routine for me that I just have a system and a way that we do it. I know the scripture that comforts her, I look forward to the chance to point her to the love of Christ during times of need and to see prayer in action as she suffers. I am praying daily that God would allow me to be there. As Noah has grown I've loved the chance for him to be there with us, to be used to encourage and comfort her, to grow in compassion and care but I think he'll go to school that day. Today her doctor asked her who her best friend is and she answered without hesitating, "Noah." I almost asked, "Noah who?" Ha! They aren't always the best of friends but I love that she thought of him first.

Details to pray for:
- That this baby could come after Jordan's surgery - even a week or so after so we have time to get settled.
- That the surgery would go well...no problems or surprises.
- That she wouldn't be in much pain.
- That the practical needs would be met/resolved (eg. do we need a wheelchair or will a stroller work?)
- That we would be content regardless.
- Of course, that the perfect name for this little sister would come to us and that we'd both be equaly excited about it.

I'll update next week with a birthday post full of pictures and a recap of Jordan's little life. Her birthday is September 30th.

Disclaimer...I must put in here that I need you to overlook typos and parts that don't make sense in this post. This medication makes me crazy and I find it so hard to be succinct and coherant. If you can all overlook it so can I. :)

Seven Weeks and Counting...from the couch

2010-09-03T21:04:00.000-07:00

I MUST begin this post by saying that I feel so badly about leaving the blogging world behind for a while. It had to be done as things were so beyond busy for me but lately as exciting things are happening I've thought a lot about starting up again. I miss my "blog friends" whose pages I read on a regular basis and I miss thinking through my day in blog posts. I can, in large part, blame Facebook for my haitus too. FB is a quick fix on social networking that held me over for a while until I could return here.

Incase anyone is wondering (or even reading this - ha ha) I have suddenly found myself with a lot of time on my hands. I am 33 weeks along in my third pregnancy and officially on bed rest as of yesterday afternoon. I'm 70% effaced and 1 cm dilated with continuous contractions. I guess they are still called early contractions but it's considered pre-term labor because they are causing changes to my cervix. I got a shot of that lovely terbutaline yesterday which stopped things for a while and now I'm relegated to the couch, chair, bed or any other "resting" position. I've been ordered to forego lifting, cleaning, walking much, laundry, etc. I can drive when I need to, I can shower, go up the stairs a few times a day, and basically be up for short periods of time. Sitting is fine and laying is probably better.

Another post and I'll share how I got here spiritually and I will fill you in on the massive amounts of answered prayer I've had this summer. For now, all this sitting around has me tired and ready for bed. Funny how that works. :)

Here are a few pictures of my first day on bed rest...how could I be sad about spending weeks on end with these characters and no distractions???? I love it and I'm realistic about the frustrations that are to come but I'm so thankful to be home with them and not in a hospital alone.

Oh and yes that IS a "scrunchy" in my hair (does anyone even own these anymore??), no I do not have a stitch of make-up on and yes, I'm putting it on the blog. :)

T-Ball

2010-03-17T21:21:00.000-07:00

Last week was Noah’s first t-ball game. We’ve been rained out for a few games and nearly rained out yesterday too. Thankfully the weather held out and they got to play. Noah did great and we were surprised at how good these little boys are. When they were in the outfield it looked a lot more like tackle football or rugby as they all ran from their positions, no matter how far away, and they dogpiled, grabbing at the ball. They were filthy by the end and had a great time. Here are a few pictures.

(Here he's the one on the left with the black glove)

(Noah's the one on the right with the black and white glove)

Isn't he such a cutie??? He is really truly a sweet little boy. We're so proud of him and so thankful daily for him as our boy.

Yes it's true...

2010-03-12T20:50:00.000-08:00

Yep - a couple of you guessed it. We're having another baby.....Lord willing.
Thankfully this is Shannon's face when I told him the news. We both knew we wanted another one but Shannon was taking a bit more of a leap of faith than me so I was hoping this would be his response.
It I've learned anything it's the fact that we may make plans but God is the one who decides.
We're 8 1/2 weeks along and having our first appt and ultrasound on Monday. I complained the first couple of weeks that I wasn't sick or tired. I wanted to feel those early pregnancy symptoms so my mind could be put at ease that it was progressing. Well I got what I asked for. I've been beyond unbearably tired and feeling sick almost all day with the worst part at night. Our house is such a mess. You may think I'm exaggerating but last night Shannon took down five water cups from my nightstand by our bed. Every time I feel especially sick or tired I remind myself that it's a good sign. So anyway I'll keep you all posted and do my best to post more often. I know that a lot of family checks this - sorry to go so long.

I found out we were pregnant the Tuesday before Valentine's Day but I knew I couldn't hold off five days to tell him. We had no night available except that Wednesday so I called a friend to come watch the kids so we could just go out for a quick dinner. I said it was an early Valentine's Day dinner. I called ahead (Sonny's in San Clemente) and asked them to make a surprise heart shaped pizza and asked if they would bring out a bottle of sparkling cider and a gift bag for Shan. Thankfully he agreed to do pizza (to make me happy even though he didn't want it) and he was so confused when the pizza, cider and bag came out. He was happily surprised. It was a really fun night!!!

Quick Update….forgive me for not writing sooner.

2010-02-20T22:44:00.001-08:00

Since before Christmas I’ve been so busy that I haven’t been able to blog. I think about the blog throughout the day, I write posts and stories and put together all kinds of funny and interesting things to write – in my head. :) I never find the time to sit and actually type it.

I’ll give you the top five things that have happened in the past few months then every couple of days or so I’ll write a post about them and more in order to give all the sordid details.

Here you go and stay tuned for more:

5. We went to Colorado for Christmas for 10 days and had a wonderful time with family. We saw my step-dad’s family, my mom’s family and Shannon’s family.

4. New Years/New Resolutions

3. Noah started T-Ball!! He’s our big boy!

2. Jordan’s eye doctor found some vision problems in her left eye so we’re patching and she has some really cute new glasses.

1. For Valentine’s Day I gave Shannon a pretty exciting announcement…you’ll have to guess what that announcement was. I’ll blog about this one first…:)

See you all in Blogland soon!

Sewing, sewing, sewing...

2009-11-21T23:38:00.001-08:00

I have two upcoming sewing parties...one this Tuesday, Nov 24th and then another one the following Tuesday the 1st of December. We're set for people to sew this week but still have room to fill this house with machines by the 12/1 date. I worked my way through a couple patterns tonight and I don't feel like the expert by any means. In fact I'm thankful one is finished finally and it's not midnight. One pattern I tried didn't work out for me so I went back to an online pattern that worked when I put the two together. Here's what I ended up with. Oh and the back of the gown wasn't supposed to be the pink fabric but the cutting out of the pieces got messed up so I had to work with what I had.

My first ruffled sleeve...it's harder than it looks. It's a pain, actually. Not sure how that's gonna work out on Tuesday. Hmmm.....

Front of the gown...notice I skipped the ruffling on the bottom. Too much work.

Bummer that this fliped sideways but I wanted to give another example of a refurbished project.
This took 10 min or so.
Jordan had an adorable Minnie Mouse t-shirt that was too short - her little belly hung out the bottom. I couldn't bear to throw it away so I opted to add a little ruffle on the bottom. She also has some black pants that are too short...I might just add some polka dotted length to those too.

Isn't this shirt just "soooooo cute?!"

Okay so be praying for out time Tuesday night that it would be fun and productive. Pray that the pattern/sewing would go easily and quickly and that the women who are great at sewing will be able to make it since it would be the blind leading the blind otherwise.
Also please be praying that this week as I talk to Children's Hosptial Orange County that they'd allow us to deliver the gowns, that they would prove useful, and that I (and whoever else) will be able to begin to spend time with some of the moms who have children there.

Hearing Issues Revisted

2009-11-10T20:46:00.000-08:00

I'm writing tonight about some mildly disconcerting news we got today about Jordan's hearing.

I want to preface it though...

Being a teacher of the Deaf and Hard of Hearing I have a pretty good understanding of the implications of a hearing loss. For this reason I take hearing loss very seriously and want to be sure to clearly say that I am not in any way making light of hearing loss or amplification by putting this picture in my post. I was trying to find ear pictures and pictures on hearing etc and I came across this one which I chuckled at. In life sometimes it's helpful to find humor in small things (or big things in the case of this photo - ha ha).

On to my story.

With Jordan's cleft palate that extends into her eye and elsewhere (no doctor really knows the damage that was done in her sinus area and inner/middle ears due to the amniotic banding) Jordan needed ear tubes to drain excess fluid that would build up in her middle ear. The tubes allowed the pressure to be released and the fluid to drain out. When fluid is present hearing is significantly affected therefore tubes are very important. She has had three sets of tubes put in and they typically work their way out of her ear drum within 12 months or so (common). I've begun recently to be concerned about the damage a lifetime of tubes will do to her ear drums and I've wondered about scar tissue that can also affect the eardrum's movement (hearing loss).

To make a very long story kinda short - I finally got her to a Speech and Hearing Center that specializes in children with hearing loss. Most of my students go there and I know that they are the best in the area. Once again it was so surreal to be going through the exact things my student's families go through. We did the standard ear check (they found that the tube is out in one ear) but that there is no fluid (meaning no tube needed). The preliminary test in her right ear showed that the tube was intact but that there might be some issue. Next we did the official hearing test where she responds when she hears a sound. I assumed everything was fine and that I was just being paranoid. Then I noticed the doctor reviewing all the positives regarding her left ear and as she was going on and on about how great that ear is doing I noticed she was holding her folder up so I couldn't see the audiogram (results of the test). My mouth went dry and suddenly it like the day we were in the OB's office and she was telling us about all the things "wrong" with our baby that they found on the ultrasound. All I could hear was the voice from the Peanuts cartoon. I knew she was saying important things but I couldn't really "hear" what she was saying. All I heard was..."She does have a mild hearing loss...I'm not recommending hearing aids 'at this point...'" I struggled to think of a single intellectual question to ask her. I just repeated what she was saying a few times to be sure I was hearing her correctly (no pun intended).
The icing on the cake is that as I was leaving I ran into a family I work with. This is a family that it has seemed everything has gone wrong with since I started. Ever have that happen? I can say with all honesty that it has been just one of those things that really has nothing to do with me. As I'm leaving with my kids, trying to process through what I had just heard I'm also trying to navigate my way through chit chat with this Mom and her daughter. It was challenging to say the least.
As I think back through what she said it doesn't feel as major, although it is a little tough still not knowing if it will progress or what we'll do now as far as ear tubes, scar tissue, etc.
One friend tonight was feeling for Jordan and said something about Jordan not getting a break - it's one thing after another. It totally feels like that and she is right that it appears that way at first glance but when really digging in she has had so many near misses or close calls or "breaks."
A few:
- At the 20 wk ultrasound the doctors said her issues could be grave and that we should consider killing her. (ahem, I meant to say "terminating the pregnancy")
- At birth they said she would have significant feeding issues and may need a G-Tube to eat.
She was the best cleft affected eater they had ever seen.
- Her genetic testing came back and they discovered it was Amniotic Band Syndrome this probably won't happen to us again or to her children).
- Her extra fluid in her brain resolved itself with no medical intervention (hydrocephalus).
- We've been able to have every surgeon and doctor that we've requested despite our HMO's rules (there have been a lot!)
- A breathing issue that went awry during a surgery was caught and resulted in a week on a breathing tube but thankfully not a tracheostomy.
- Her hand surgeon said once to a resident that Jordan was a worst case and I corrected him letting him know that worst case would've been being born with no hands.
- Her orthopaedic surgeon said that many doctors may have amputated her lower leg but that it was good that we had a doctor who opted to try to correct it instead. Praise the LORD!
- She kept failing hearing tests when she was younger (I'm talking profoundly failing them) but the middle ear issues were resolved giving her hearing.
Without any breaks Jordan could have been profoundly deaf, with amputated hands and one foot, needing a shunt to drain the fluid from her brain and a feeding tube to get her nourishment. It's encouraging to look at that list and then compare it to where she is today. By God's mercy, the last three years have been hard but she is doing great and my guess is that a mild low-frequency hearing loss will not slow her down.

Halloween 09

2009-11-08T07:00:00.000-08:00

My mom got Noah a Jeff Gordon Nascar racing suit and Jordan was going to be the usual - a princess. However at the last minute I decided Jordan would do something different for a change. One of the many years past when we missed Halloween due to surgeries for Jordan I grabbed a few costumes from a marked down $1 bin. Among those was a cute bumblebee suit. It was absolutely perfect and totally adorable on her! My favorite so far.
Our church put on a giant "Fall Fest" as an alternative to Trick-or Treating and it was a total blast. Nearly 8,000 people went (from the community - our church isn't that big) so thankfully they had a great toddler area which was perfect for our kids.

Noah and his friends Dylan and Sheadon. These boys are so sweet with each other and have such similar personalities. It's nice to see their bond and affection for each other.
This is Miss Hawley (Katie) who is a dear friend's sister. Isn't she beautiful?!!

This is Braydon - seriously it's so funny with these two. They both are smitten with each other and ask about each other randomly through the week. Look at his sweet face looking at Jordan!

Not quite a modified Nascar race car but I guess an elephant bumper car will have to do.

They are SOOO cute!!!!

"Refer"

2009-10-28T21:23:00.000-07:00

One magic little word...."Refer" used to replace a much harsher sounding word..."Failed."
Being a teacher of the deaf I was certain my children would be born deaf. The newborn hearing screening wasn't mandatory at the time but I made sure Noah was screened. Then with Jordan and all of her issues they told me they weren't going to check her hearing. They said it wasn't routine. I very politely informed them that I wasn't leaving until they checked it.
Well she got a "Refer" which is a nice politically correct way of saying that she failed her hearing test. For four months she tested with "no reponse" to sound. The audiologists assured us that it was probably just fluid but I wasn't able to look at or even go near the shelf in our house with my textbooks on hearing loss until I knew for a fact that she could hear. The potential was devastating to me. Thankfuly she got ear tubes and was cleared with great hearing.
I've wondered a few times about all the ear tube surgeries she has and what the lasting effects will be on her tympanic membranes (ha - big word for ear drum...just thought I'd impress you with my vocabulary). A while back she "referred" during a doctor's visit hearing screening but an audiologist who doesn't usually test kids said she was fine (even though I heard her miss high frequency sounds). Then I took her again to the ENT for something else and she "referred" again. Later I tested her myself on an audiometer and it showed a high frequency loss. I chalked it up to attention. Today we were back at the ENT for a tube check and she "referred" again.
The doctor thinks it might be hearing loss due to scar tissue. Bummer. We're praying that they don't send us back to that same adult only audiologist and that we can get to the bottom of this. Thankfully I think it is only in one ear which means even if it's a significan high frequency loss she would not necessarily need hearing aids.
We will keep you posted on the insurance approval and the test results. Pray that we can get in to Providence and that we can get some advice on these surgeries and the lasting affects of ear tubes. Her ENT said she'll have to have them forever.

Making the Most of Every Opportunity

2009-10-26T21:44:00.000-07:00

A couple days ago a friend asked on Facebook if anyone had any advice for her toddler who has to be sedated for an endoscopy (a camera thing is put down his throat into his G.I. tract I think to find out why he eats so little). If I'm wrong, correct me in the comment section.

Anyway - he has to be sedated so her question was how to comfort him and prepare for the anesthesia and how to get her mind around the sedation.

I began to reflect on my experience with Jordan (8 sedated surgeries in two years with one of the surgeries resulting in nearly a week of sedation with a breathing tube which can make people so crazy that they typically keep them full of anti-anxiety medication the entire time). I relish the few times that our challenging experiences can actually prove useful for other families in similar situations, facing the same feelings and needing practical advice.

Often the first thing that comes to mind is the basic practical advice such as, try to enjoy the time in the waiting room with a cup of coffee, a book, undivided time to read your Bible, etc. This time my mind very quickly went to "making the most of every opportunity."

Ephesians 5:15-16

"Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil."

As Christians (those who put their trust in Christ) we are promised trials and it does matter how we face those trials. We should anticipate these times and see them as fantastic opportunities to "train our children in the way they should go so that when they are old they will not depart from it." Proverbs 22:6 My sugestions to Kim were to use this as a time to put her words into action and show her son what it really means to trust God. It is a chance for her to pray with him, to explain (in 2 year old language) the sovereignty of God, the directive that we are to "be anxious about nothing but in everything by prayer and petition with thanksgiving, present [our] requests to God and the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus." Phil 4:6-7 She can be self-controlled and strong for her son as he looks to her for a reaction and response.

I have prayed so much with Jordan over the past three years that she has come to rely upon prayer (as much as she can really get her little mind around it) as a source of comfort and strength. With eight surgeries she has had literally countless doctors visits, pokes, prods, needles, tests, x-rays, pin removals and of course her all-time favorite the cast removals using the handsaw. I can't count the times I've had to hold her down and she still talks about cast removals with her screaming and me covering her mouth with my hand. She would know it was coming so while we waited for the doctor to come in she would literally CLING to me while I prayed with her. After her last big surgery she was in pain, uncomfortable and literally all she wanted was for me to pray. She would cry non-stop, "Pray Mama, PLEASE!" This reliance on prayer (at a very basic level for comfort) came from me purposing, as scripture commands, to make the most of every opportunity. As John MacArthur states in his commentary, "We are to make the most of our time on this evil earth in fulfilling God's purposes, lining up every opportunity for useful worship and service."

Everything in our lives, as Christians, should be used to "redeem the time" (MacArthur states that this refers to one's lifetime as a believer) so what better opportunity than to show your children directly how to do well in trials. I hope that Kim will make the most of this trial with her son to practically show him God's plan for us during the trials in our lives.

*******

I LOVE this picture for the post because it captures the image I have in my mind that I've seen countless times...my daughter - my baby - staring at me, unable to say anything, watching and waiting for my response in order to gauge how she should respond. By God's grace and through MUCH prayer I can look back and say that much of the time I made the most of those opportunities.

Jordan's New Sling

2009-10-17T14:57:00.000-07:00

Here's a little post on my latest sewing project.
I wore Jordan in a sling exactly like this for more than 2 1/2 years since she couldn't walk much of the time. It was the best gift ever. Mine was made by Jenny Woodward who also jumped on the hospital gown ministry right away. Her blog is http://www.doctrineanddiapers.blogspot.com/ and you can see her projects under the craft link on her page.
I copied her pattern a year ago or so and made a smaller version for Reese Woodward and have since made another one for a neighbor, Cassidy and also matching slings for Jordan and her little girlfriend, Reagan (her 3rd birthday is Tuesday).
I used a coupon so each sling cost me less than $5.00!
Here's a picture of Reagan and Jordan

Here's Cassidy and then a picture of her birthday sling.

I'm so thankful to my mom who bought me my sewing machine - Thanks Mom!

Audiometry

2009-09-23T21:54:00.000-07:00

This month has been SOOOO crazy with Jordan's appointments in addition to a slew of additional appts for her school district assessments AND I now work two days a week AND Shannon is doing his mortgage work along with taking classes toward his master's degree. Yikes.

Today was the day Jordan went in for her vision and hearing screening with the district nurse. Many of you may not know that I am a teacher of the deaf (really I'm just a mom but my credential and master's says I'm a teacher of the deaf so two days a week now I'm both a mom and a teacher). Most of my schooling was in the area of specialized instruction for deaf/hard of hearing children with some speech pathology courses and some audiology courses. Because of this, I was particularly interested in Jordan's vision and hearing screening today. When I talked to Shan and asked him what they did, what type of equipment they used he chuckled and said something like, "You're gonna love this. Are you sitting down?" He proceeded to tell me that they told her to turn around and then the nurse rang bells and made different sounds with various toys. If Jordan could hear them then she passed. I nearly fell out of my chair. I was at work so I asked our nurse why on earth that would be their protocol. She said it is a very antiquated way that schools used to check hearing. No one uses that method anymore according to her. She told me they now use an audiometer, which is what I was expecting from our local district. She let me take hers home to test Jordan myself for peace of mind.

Here's a sideways picture of the audiometer. It kept rotating sideways when I posted it - sorry.

It presents tones through headphones at various frequencies and decibels so an actual audiogram can be made. It also isolates each ear so you can tell the hearing in each ear independently.

Being an audiology student and teacher of the deaf, I can't tell you how many textbooks I've seen with cute kids holding blocks up with their headphones on, waiting to hear the tones.

I love learning about the intricacies of the middle and inner ear and how perfectly things must work together for information to reach the brain. It is truly fascinating stuff. To be able to give my own children hearing tests was SO fun and to see them with their own little blocks in hand was really so cool.

When Jordan was born I requested a Newborn Hearing Screening. They said no (not in so many words but basically they resisted). I persisted and basically said that I didn't want to leave until they checked her hearing. With everything else I needed to know she could hear. She failed. We took her to an ENT then an audiologist who did an ABR - Auditory Brainstem Response test which measures the brain's response to sound. She got no response. I was devastated to say the least. I went home several times after various audiological appts and stood in front of my textbook shelf and cried. I couldn't make myself pull those books down to look at them as a parent. I couldn't face the thought that of all disabilities she could be deaf. I knew the challenges from my schooling and my job. I knew what deafness would mean for her and for our family. After more tests were done it was suggested that it was simply fluid and that once she got tubes put in her ears that she would hear fine. Thankfully at four months she got tubes and we found that her hearing was fine. I was beyond relieved. Since then I've worked very hard to make sure her tubes are in place and that her hearing, despite fluid, infections and tubes is managed. She failed her last brief hearing test in one ear at the ENT's office so I was relieved to be able to test her myself.

One more quick note is that I offered to also test my neighbor and her daughter. Her daughter came back within normal limits but my friend showed a significant high frequency loss. She has suspected it for a while but hadn't had time to go get it checked. She's relieved to know now and to be encouraged to get a full work up. I also gave her handouts describing the type of loss that showed up on her chart tonight. What a fun toy this is. Anyone else wanna try it? :)

Quick Update on JJ's Progress

2009-09-12T11:10:00.000-07:00

I had a few minutes here on a Saturday while Shannon is at the men's retreat and I'm a total vegetable on the couch with the kids watching a movie - after a morning of cartoons (yes, I'm a bad mom) so I thought I'd post a quick update.

September is a VERY busy month for us as I start working two days a week (boo hoo!), ministry starts up at church for us and the kids, Shannon starts school again (and works full time with our Real Estate Mortgage business), Noah starts his one morning a week preschool again, Jordan continues with therapy as usual and we go through the crazy process of Special Education testing through the local school district. Uggg. Today is a much deserved morning on the couch with the kids. I'm loving it!

As for Jordan's update - she is doing very, very well and it's great to see. This month she is being assessed in the areas of gross motor, fine motor, speech/language, pre-academic and cognitive skills with our local school district. We aren't expecting her qualify for services in any area, thankfully, but we want to be sure and we want to know for sure that she is closing the gap developmentally and that her medical issues haven't caused delays that need to be worked on. Next month we are expecting her to only have therapy one morning a week and no surgeries scheduled on the horizon for another 2 or 3 years. I can't imagine! She will be three this month which a whole blog post in itself.

A big milestone recently is her ability to go up and down a few stairs without assistance. It's so exciting. She is physically becoming more and more independent all the time. She's beginning to be able to hang on monkey bars for a couple seconds (showing increased hand strength and flexibility), she is beginning to learn to use special scissors to cut paper, she can draw circles and lines on paper, she is only wearing her brace part-time now and is graduating to a smaller brace in a week or so. She's just doing so great and it's fun to see. I put a video on here of her climbing the stairs in front of our house. We've been working toward this since she began walking after her surgery earlier this year.

I will be posting more pictures soon and then of course her birthday post - she turns three on September 30th and we're heading to Disneyland with our "princess" for a day of celebration. Yes she will be in costume - princess of course.

Refurbishing

2009-08-21T17:46:00.000-07:00

Recently I got two new books, thanks to a 2007 Amazon gift card from my brother. The card fell behind the drawer and I just discovered it. I knew instantly what I would buy with it. I had been eyeing these books for a while now. I follow a blog of a woman who wrote two books. One on fostering creativity in your family and the other on using old items to make fun new things.

Her blog is http://www.soulemama.com/ and you can get a link to it here or on my list of favorite places.

Here are her two books

So in the spirit of refurbishing I've recently taken up arms against stained clothes. I can't stand to throw away cute clothes and Jordan is CONSTANTLY staining her clothes. We jokingly call her Pig Pen (Peanuts cartoon) as she is constantly dirty and dragging her even dirtier blanket around with her.

I've taken a few pictures of what I've done to cover her stains and salvage her shirts.

Regarding stains...
Bleaching seems to be the quickest and easiest but on patterned shirts a quick sewing on of a picture or shape works well. You can always look through other stained clothes to find cute pictures or designs and save yourself money on fabric too. Save old shirts that aren't salvageable and sew buttons on various stained spots, sew shapes or patches onto shirts too. Patches seem like they'd be too heavy for lightweight fabric but making your own from any cotton material works well too.

Another clothing issue that is particular to our family is clothing missing sleeves and legs.
In this picture Jordan has on my all-time favorite shirt. Like many others during one of her months in a cast we cut one arm short so it could fit. Sadly over the past couple of years I've thrown away so many great pants and shirts because they've had a leg or sleeve cut off. Tonight I figured out how to sew a stretch seam with my machine. I just cut the other arm short then sewed matching stretch seams and voila! a new shirt.
Stay tuned for a really fun, exciting post on shoes! I met with Jordan's foot surgeon and we have good news...and of course great pictures.

Conflicting Desires

2009-08-12T21:21:00.000-07:00

An article was forwarded to me by a friend today. It was a thank you note to parents of children with special needs and there was a part of that article/letter that stood out to me and made me think a bit more about raising Jordan.
I thank you, special needs parents, for your tireless attempts to wrestle with your own conflicting desires. On the one hand, you want the best possible support for your child in their battle, finding the best schools, the top techniques, and the latest research to justify special treatment. On the other hand, you strive to normalize your child and his surroundings, never allowing your child's special needs to rob them from the joys of "normal" life, nor excuse them from the painful lessons that life has for all of us. Those of us without special needs kids face this same internal battle, wanting to both protect our kids from life's dangers and yet expose our kids to life's lessons. For showing me how to fight this battle on both ends, equally holding up both protection and exposure as valuable, I thank you.
Special Needs, Special Love
Hal Runkel, LMFT
I can relate so well to this author's description of "conflicting desires" for children with challenges. As put so clearly above, we want the best of every opportunity for Jordan which often means exhausting effort fighting insurance companies, persuading doctors, constant therapy, financial strain as a result of exorbitant medical costs and equipment, etc, etc. At the same time we do indeed want her to live a “normal” life of park dates, quiet family time, having friends, swim classes, dance classes, and other fun things typical kids do.
Even beyond this it brings to mind something I was sharing with a mom at work just today. This is a mom whose son was born with microtia and atresia (malformation of the ear). He is a child on my caseload and when he’s about six he will have a series of surgeries to create an ear. She was concerned with how to respond to various aspects of surgeries in regard to her son having the surgery and also his brother. I was able to share with her that God has absolutely allowed this event/trial in her son’s life and that, as a believer, He will sustain her and provide her with everything she needs. I told her about Jordan’s insanity at doctor’s offices that came as a result of surgeries and that during her times of fear and worry I would explain to her that we are not to be “anxious in anything but in everything by prayer and petition present our requests to God and the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus.” (Phil 4) I would pray with Jordan before, during and after doctor’s visits and eventually she would ask for prayer. After one big surgery she was fearful and in pain and asked for me to pray with her every five minutes or so. Here is where the “conflicting desires” come in (as the author talked about above). I’m sad for her trials but at the same time I fully understand that without them she would not be forced to lean on the Lord for comfort. Although she is not saved she already has, at two years old, an intellectual understanding of God as comforter, healer, provider. For all of that I’m thankful for her affliction. Her challenges have given me an opportunity to demonstrate what it means (in good times and difficult) to live for Christ and to fully trust in God’s sovereignty (if He were not indeed loving He would never have sent His own son to die on our behalf!).
As the author talks about two “conflicting desires” of wanting to protect our children yet expose them I’m able to say that by God’s grace I am thankful for what He has exposed Jordan to because of what it offers her and the rest of our family as well as those involved. I feel for her when she’s in pain or when common daily tasks are a struggle but I’m also thankful for so many rich experiences that directly send her to our Heavenly Father. When I think of it from this perspective it's really no conflict at all.

Homemade Ice Cream in the Summer!

2009-07-24T19:40:00.000-07:00

I am so excited to post this -
When I was a kid summers were spent at my grandparents house (that they built themselves when my dad was young) in the swimming pool (that they put in themselves), and ocassionally eating ice cream (that my grandpa made himself). I especially remember many a 4th of July with all of my cousins and family swimming, jumping off the diving board, eating in the backyard then lighting fireworks and eating homemade peach ice cream. Shannon, the kids and I were in Bakersfield recently visiting the Woodwards and we had delicious homemade vanilla ice cream (thanks Jen Garcia!!!). It brought back such memories! We went to visit my family in Palmdale on our way home and I mentioned to my dad that I'd love to have Grandma and Grandpa's old ice cream maker. If you read back through the blog you'll see that my grandpa died a year ago last April (on Noah's birthday). Since then my dad has asked me if there is anything special I'd like of my grandpas. I asked him if I could have it and we set out searching for it. If you look at the pictures from about a year ago on the blog you'll see that this wouldn't be easy. We searched the service porch, the garage and finally out to the barn we went and finally found it covered in dust but wrapped in it's original box. My grandpa never threw anything out so we figured it was there somewhere.
I have been so busy since then that today was the only time I had to possibly do it. Shannon's mom was here for dinner so she helped...

(She thinks it is roughly a 1960's model ice cream maker)

Noah was such a helper and the kids were so excited! All through dinner he kept checking on it to make sure it was still okay. When Jordan bumped the door into it he ran in the house and said, "Mommy! Sissy bonked the door into the milkshaker!!" We all laughed so hard.

Jordan seems to like it!

Amniotic Band Syndrome as Illustrated by a Cucumber

2009-07-21T21:49:00.001-07:00

We are growing tomatoes, strawberries, zuchinni and cucumber in our yard now and lately we've had quite a few that are ripe and ready to be eaten.

It's been great for the kids to pick out and plant them, to water them and to watch them grow then finally to eat them.

This one was really interesting though.

It made us chuckle a bit because it looks an awful lot like it suffers from Amniotic Band Syndrome or Constriction Band Syndrome. A vine was wrapped around this poor cucumber as it was growing so a constriction band formed that was permanent, even after the vine was removed. It's perfectly fine but it is shaped a bit differently than the other cucumbers that were not tangled up in a vine.

Hmmm...does this sound like anyone we know????

Craniofacial Appt Today

2009-07-21T21:32:00.000-07:00

Today was such a stressful, hectic day!

My neighbor picked up Noah for Bible camp at our church, I took Jordan to physical therapy where we were meeting with a PT from the school district (and I forgot what time it started so I was late), after that she had occuapational therapy. Then we dashed to speech and I had to step out to make a work phone call (an appt I made last week - I work from home every other week). After this we picked up lunch, went to church to get Noah and his carseat then headed up to Los Angeles for Jordan's craniofacial/plastic surgery appointment. We were an hour early so I headed to UCLA Medical Center to see if I could show our contact there the hospital gowns women have made already and see if they'd let us donate them. By the time we parked (paid $10) and got inside it was too late for me to find the person so we ran in to get a soda (which Noah dropped on the floor and it exploded all over the cafeteria food area). By now we are REALLY going to be late to the surgeon's appt (he was seeing us for free as a favor so I didn't want to be late at all). I was snapping at Noah to hurry up and then L.A. traffic was horrible! By the time we made it to his office in Santa Monica (5 min late) I was so stressed.

He never speaks directly to patients it seems. He usually says a bunch of medical jargon to his fellows or residents or whomever is there and then he gives me a chance to ask my questions. I took some notes and tried to keep up until I heard him say that he wants to wait until she's six to do the surgery. My heart sank. He orginally said three years old (this Fall) and now he is saying six. He is in his early to mid 70s so now I start to jump ahead to the fact that he may very well not be practicing medicine then. He wants to open up the skin near her left eye, pull out more scar tissue from the amniotic bands, put in some kind of artificial tear duct then open up her left nasal area to do work on her nose. He wants to do it all at once and he wants to wait until her orbit (the circular bone the eye sits in) is more than 90% developed (six years old). I was beyond deflated. I asked him if he could just do the nose but he wants to wait. I told him to make detailed notes incase he decides to leave before then. He laughed - but I was serious.

In thinking more about it tonight I am still disappointed BUT I can see more clearly now that God chooses our doctors, He chooses the timing, He has his hand on every detail of our days. My wisdom is SO very limited yet I stomp my feet and demand my way. SO stupid!

I always go back to Proverbs 3:5 (Noah used to recite this when he could barely speak) "Trust in the Lord with all your heart and lean not on your own understanding." This is what I will do. And like Paul, I will be content whatever the circumstance.

Updates and Progress

2009-07-21T21:01:00.000-07:00

We got to go camping with our marriage group at church and it was so fun! Jordan rode on the Sea Doo and in the boat and she gradually warmed up to being in the water.

Speaking of water...here is the little bug during a swim class. Ms. Connie (Swim Early) in Mission Viejo has taken us under her wing and has been helping us with Jordan's swimming. She has seen us twice in the evening and once during an older kids class. She has been instructing me in how to teach Jordan to swim. Jordan has SUCH a great back float and to think she HATES to be on her back. This was only the third time being in the pool. If anyone is interested in classes she teaches from April to August and is always booked. I can get you more info if you'd like it.

I LOVE this picture! Jordan is totally a Papa's girl and this picture shows it. It's not that she doesn't adore her grandmas and other grandpas but she and Papa were cut from the same mold and it's so funny to see. They both thought it was so funny that she had his hat on.

I met with Jordan's hand surgeon, Dr. Jones, last month. I assumed it was going to be a goodbye since he has said in the past that there isn't much more he can do for her but he told me at our appt that he plans to eventually work more on her hands in the future. He said that he will work a bit on the appearance sometime too and will try again to widen the web space between her shorter fingers (he said that he couldn't do any more at her last surgery because of the nerves in the hand). We love our Dr. Jones and are so thankful for him. He asked for a copy of this picture by the way. :) Very cute. They all just laugh and laugh at Jordan every time we go. This last visit may have been the first time she was at the doctors without screaming. The staff way on the other side of the office (around two hallways) saw us either this visit or the one before and said, "Oh wow, we didn't even know you were here - we didn't hear a thing!" Funny.

We painted our kitchen and family room recently and the kids helped. Jordan wanted to be in the midst of everything, of course.

Here are our tomato and strawberry plants. Jordan LOVES vegetables (even onions, mushrooms and similar things) so she eats these by the dozen.

This picture cracks me up because it really shows what she is always doing. She is either making pretend food for us, cleaning things with baby wipes, caring for her babies or watering plants. She's such a busy little homemaker!

Okay so onto more medical stuff...

Speech:

Jordan's speech therapy funding ends at the end of the month through Regional Center. She has made fantastic gains and her therapist is trying to get her into a social group for the month of August until sheh turns three. She needs a lot of prompts by me with her peers and seems to find it easier to just play alone. I'm not concerned with her speech anymore and although she struggles with some sounds (motor planning) I am confident that it'll work out.

Physical Therapy:

She is also doing GREAT in this area!

Her strength is way up, her stamina, her balance, her coordination and her range of motion in her foot seem so much better too. She still fatigues easily, falls a lot, can't go up or down stairs/steps by herself yet and she isn't running but overall it's much better. Her therapists are shocked at her progress.

Occupational Therapy (fine motor and eating):

She's doing much better here too. She continues to build strength in her new thumb and she is using it much more now. After the surgery her arm usually just hung by her side and she inefficiently did everything with her left hand. Strength is our focus now for her right thumb.

Craniofacial:

I'm posting separately on this one.

Orthopaedic:

We meet for a follow-up August 18th with her foot surgeon to find out if she can be done with the leg brace. I'm hoping he says yes but it really doesn't bother her or us for her to wear it and if it gives her better odds of not having the surgery re-done we'll do it.

More Pictures from June/July '09

2009-07-21T20:44:00.000-07:00

Our first gowns!!!

2009-07-01T22:12:00.000-07:00

Here is a precious hospital gown made with care and prayer by Jennifer Woodward.

You can see the post below but a week or so ago I posted a request for anyone who could sew to begin thinking and praying about making cute hospital gowns for babies and toddlers who are in the hospital. They would be particularly for high level care kids who have too many wires, tubes, etc to be able to wear their own clothes and who are in the hospital for an extended stay.
Go to Jennifer's blog to see her post on this (worth reading!) and more pictures and details.
http://doctrineanddiapers.blogspot.com/2009/06/gowns-are-on-their-way.html
This has me beyond excited!
A mom I whose daughter I see when I work told me about her own daughter being blessed by similar dresses while she was in the hospital for an extended stay. Some women got together and donated a few for her daughter in Ohio. I thought that I might as well try to duplicate the process here at a local hospital where Jordan has spent time (CHOC, UC Irvine and UCLA).

The challenge for me is that I'm a beginning seamstress and due to Jordan's care etc. I don't have much time to get this started. Honestly I was a bit discouraged thinking about how many weeks it would be until I could spend time finding and working on a pattern, trying to figure it out so that I could send it out to other women who sew who have offered to help.

Tonight I got a call that Jennifer already dropped a few off at a friend's house for me!

I visted her blog and saw so many comments by other women who also want to help!!

I am so encouraged and so moved by everyone's enthusiasm and care.

I am beginning to pray about the hospital to contact for donations. Originally I assumed it would be CHOC (Children's Hospital Orange County) but I've been really drawn to UCLA Medical Center since first thinking about this.

Some of you don't know that Jordan spent nearly a week in the PICU there on a ventilator, sedated with tubes all over and all I wanted was my baby back - the way I knew her (in her own clothes, in her own bed, awake, etc.). In an effort to share the true Jordan with her caregivers I hung pictures of her, put bows in her hair and laid "Piggy" next to her along with her quilt that was handmade from our church's quilting ministry that had an angel pin given to Jordan by her Great Aunt BJ. I hung pictures of Noah along with his cards for her, all to remind myself and the staff that this patient was not our girl, not the girl we know. There were families there whose children would not be going home or who were facing months of hospitalization who could've benefitted even more.

All this to say that the bows, the blanket, the pictures and Piggy really weren't needed at UCLA because it is a place where the staff truly cares! I drive up to that hospital and I have a feeling of comfort and love for them. We went back to visit after we were released and they were so excited to see Jordan. One year later we were back for another surgery and I ran into some of the PICU staff in the cafeteria and they recognized us! They were so sweet and so kind. In thinking back to our time there I really feel I'd like to donate the gowns to them with a special letter thanking them. I'll keep praying and any of you who sew start sewing! I'll get the pattern from Jennifer (hopefully) and let you all know where you can find it or duplicate it.

Here is Jordan the first night in a gown.

And here she is with nothing on but her bows, her best friend and a diaper. :)
If you want to read back through these posts you can find them on the right hand column of the my main blog page - This was October 2007.

Thank you everyone!

Anyone else interested please post here and stay tuned for a pattern! Forward this to anyone you know who sews!

My Two Fish

2009-06-29T21:43:00.000-07:00

I posted that Noah started swim lessons last week and he's doing so much better every day. Saturday at the city pool he jumped off the edge into the water, made his way to the wall underwater then pulled himself up back out of the pool - more times than I can count. He's super excited about swimming so we'll see how it goes tomorrow at class again.

My mom wanted to put Jordan is swim class along with Noah but I was concerned with her sensory issues (vestibular problems) and wondered how it would go anyway with her foot and just her being behind in her gross motor skills in general. The teacher offered to see Jordan in the evening when she sees her special needs kids but after talking more she felt Jordan wasn't ready yet. She told me to start putting her in the shower, getting her face/head wet and just getting her more used to the water. She also said that she'd meet with us one time as a freebie to help us with ideas to work with her on our own to prepare for swimming.

I took her tonight and of course she clung to me and screamed when I let her go but it really wasn't that bad. As soon as Ms. Connie took her and was really firm with her she did very well. Ms. Connie actually got her in an inner tube kicking her legs by herself and she really does kick pretty well. She also got her underwater twice before she really freaked out but Connie kept putting her under until she calmed down enough to ask to please be taken to the steps. She also got her on her back floating with only one hand on the back of Jordan's head. When I tried to do those things with her it was really bad. I was so nervous and tense and Jordan wouldn't do it, she kept screaming and I really just wanted to watch Connie work with her as I sat in the chair. Instead, Connie says she wants to work with me at least another time before I do anything with Jordan in the pool by myself. I was totally surprised by my response to her fear and her screaming. Usually I think I do really well when she is scared, screaming, and everything else that we've had to work through with her but she looked so tiny in the pool and was so scared. Connie says that this is the summer we need to work with her on swimming because she's getting older, she's cognitively able to do it and responds like a typical toddler to the water (scared but not dealing with an abnormal reaction like some of her special needs kids with autism etc.) and if we wait she'll just become more afraid.
I'll be meeting with Connie again Thursday at 5:00 to work on this again and then she said I can get in the pool one week from Thursday possibly during Noah's class so she can help me a bit just with verbal direction.
Okay so enough of this long post. I wish I had pictures but I was in the water so I'll try to get some soon.

Yay Noah!!!!!!!!!!

2009-06-24T16:46:00.000-07:00

What a huge week it's been at our house and it's only Wednesday!!
Noah had his first swim lesson yesterday and today he rode a bike with no training wheels!
Yay! What a big boy we have!

More pictures from San Diego...see previous post

2009-06-21T21:26:00.001-07:00

These posts always come up in the wrong order - I added more pictures from San Diego - scroll down for the post about our trip.

Mission Bay Playground
Shamu!!!!

I love this picture. She is SUCH a happy girl!!

The Fam

Jordan loves talking about bubble gum. Here she just said, "Wanna see me blow a BIIIG bubble?" She does this all the time and it's a crack up.

San Diego

2009-06-21T21:16:00.000-07:00

So cute!
This boy loves the water!!!

Petting Zoo at the Fair

Jordan thought all the pigs were named Wilbur.

This was a fun area at the fair where people could hear themselves playing instruments.

Noah loved it!

We're back from our San Diego vacation and wanted to post some fun pictures.

We had credit card points that needed to be used so we booked a last minute trip to La Jolla for the family. Shannon was so sweet and planned the entire trip for us. He even researched local things for us to do while down there.

Shan got to surf, I got to run, we played by the pool (I napped!), went to the San Diego County Fair to see the animals and eat all kinds of weird fried things, we went to Sea World, and then spent a little time playing near Mission Bay. It was the best! We came home refreshed and rested and more than a little thankful for our time away.

Hospital Clothes

2009-06-16T22:59:00.000-07:00

This one is blurry but you can see the stitching okay.

Here's the front.

The back with buttons.

I sent an email out to my friends and family who sew asking for them to consider making hospital "dresses" for babies who need to be hospitalized. I was talking to a mom today who often spends weeks at a time in the hospital with her 2 year old (days younger than Jordan). Someone made her a few dresses for her to wear rather than hospital gowns.

It was so touching to her and I can understand why.

When your child is in the hospital hooked up to machines and wires, wearing hospital issue (way to big) gowns it's too easy to forget what they are without all of it. So quickly parents and others forget to think of them in all their personality. It's easy for doctors to see this assembly line of patients when they do their rounds and to think only of the case. My favorite thing has always been putting Jordan's own clothes on her when she's in the hospital but it's often way too challenging with everything she's hooked up to as well as large casts and bandages.

I remember when she was in PICU for five days hooked up to a respirator, a central line, an IV, a pulse oximeter, a cast on every limb except one and bandages on her face. I HAD to at least brush her hair and put a cute bown in it. It didn't matter that she was sleeping through it.

I hung pictures of her up on her bed so the staff would see her the way she is - laughing, being silly, playing, etc. Fun, cute, thoughtful dresses would've made my week.

These dresses would be perfect. They are a similar concept - open in the back with a button or two and a long gown type thing that can give medical staff easy access to the baby/toddler. BUT they are SO cute! There are so many cute, colorful fabrics and styles that can be used with these...ruffles, pleats, embroidery, fun stitching, sports themes for boys, or cars and trains. The possibilities are endless for you creative types.

My sewing skills are limited so I need help. I need someone who is good at this who would be willing to come to my house with her sewing machine (or have me to her house) with a few other women who are interested so we can figure this out (unless you all can figure it out on your own).

We all need to make two - yes just two.

Then we can deliver them with cards to families at CHOC (Children's Hospital Orange County) or my personal favorite UCLA Children's where Jordan has spent many, many days.

I also envision somehow putting a bible verse in them...perhaps low cost tags that can have writing on them (my friend did this for a baby blanket she crocheted for Noah) and of course the cards of encouragement can use scripture.

Seriously friends I'm so excited about this but I can't do it alone.

I need creative seamstresses to add their own flair.

I need spatially gifted seamstresses who can help with the pattern (very simple!).

If you don't sew you can purchase fabric or send money for it.

We can find so many cute patterns in clearance racks for next to nothing or we can buy sheets that are on clearance with cute patterns or get Ikea fabric...the sky's the limit.

Post on here if you're interested - many of you have received an email about it and I'm looking forward to seeing who is interested.

"Not me!" Monday

2009-05-18T21:43:00.000-07:00

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

After reading through a fellow bloggers site for a few months I finally feel I have a legitimate "Not me!" Monday post that is worthy of linking to her blog. Recently my 2 year old did not have her 8th surgery and I most certainly did not plan a day at Disneyland for myself and the kids following said surgery. After a dely in the start of surgery I did not get antsy because our Disney day was waiting. While waking up from her surgery and taking a bit too long to be roused from the anesthesia I most certainly did not wait until the nurse left so that I could jostle her awake (clearly she thought she was going to take a leisurely afternoon nap while my son and I made playdough snowmen and drank juice). Once she woke up I did not quietly bribe her with the Dumbo ride in order to get her to stop crying so we could check out quickly (had I done that it would explain that fact that she instantly stopped crying but since I did NOT do that it must have been that she was as ready to break out as I was). As we were packing to leave I thought about our doctor kit at home that we've used to make her less freaked out by such frequent surgeries and doctors but don't think for a second that I am the kind of person who would enlist a nurse (whose identity I will keep secret) to help me slip the medical supplies they would have to throw away into my large and very full hospital issue plastic bag...oxygen mask, blood pressure cuff, surgical cap, etc....If and I say IF I had done all of these things I would never have buckled the poor post op two year old into my Ergo carrier as we spent the afternoon in 85 degree weather in search of Donald Duck and I most certainly wouldn't fill her with cotton candy and fantastic rides at Disneyland and California Adventure and I wouldn't think of pushing my four year old son in the stroller without a shirt because he peed all over it the minute we got into the park. I love my kids way too much to do such insane things in an effort to creat good fond memories to replace the hard ones we endure on a regular basis.

Pin Removal Surgery Update

2009-05-07T22:34:00.000-07:00

Today went really well. We really had such a great day. We took Jordan to speech this morning then headed up to UCI. While we were waiting to go back we played with a beautiful black lab (a hospital therapy dog) then when we went back all the nurses and anasthesiologists recognized us from the last surgery. It was really fun. We chatted and the kids hung out. Jordan barely cried (usually everyone on the floor knows we're coming because she's hysterical). She didn't even really cry much when they took her.
We got her ready then gave her Verced (spelling) to mellow her out and the surgery only took 20 minutes or so. Dr. Jones cut an opening then pulled the pin out (yes with pliers) and stitched it up. Simple as that. When we went back to recovery (Noah and I - Shan couldn't come today due to work) she was asleep for a long time with a little oxygen mask on. Noah seemed a bit unnerved and kept saying he didn't want me to leave him alone with her. He was rubbing her cheek and talking softly to her. After a while I figured she was over the medicine and simply napping and I didn't want to spend the afternoon hanging around while she got her beauty sleep. I shook her a bit and she woke up. She cried quite a bit this time afterward. She was kind of angry too which is all just a result of the anasthesia. After a while I told her it was enough crying that she needed to stop crying and start getting ready to go (I was a bit stern). She stopped crying instantly then slyly looked over at the nurse and smiled this funny smile. We all cracked up. She is so dramatic. It's hilarious.
After we left there we went to Disneyland - yes Disneyland an hour after her surgery. Noah was reminded of Ephesians 6:1-? "Children obey your parents in the Lord for this is right. This is the first commandment with a promise THAT THINGS WILL GO WELL WITH YOU and you will live a long life on the Earth." His behavior was impeccable while at the hospital. Even being nit-picky I can't find even one time he disobeyed or was not honoring or respectful so as a result things went well for him. We had a great time at Disneyland and then headed to church later for a dinner and dessert with our bible study group.
So all is well here tonight. Jordan is in no pain, not even on Tylenol. Praise God!
I still can't find my camera charger so this was the first surgery we've had with no pictures! Sad!!!! Therefore I have no pics to post. I'm going to dig around this weekend to find it and get back in the game.

Surgery #7

2009-05-06T22:28:00.000-07:00

I wish I had pictures to post with this but Shannon has the laptop at his parents tonight so a quick update will have to do.
We went up to Orange (UC Irvine) to do the pre op and on the way up there I was told that Dr. Jones wants to do the pin removal as a surgery rather than in the office. We scheduled it for tomorrow at 1:00. Poor Jordan can't eat or drink anything before the surgery which means she's going to be pretty sad. It should be a really quick one. They'll give her Verced (spelling?) to mellow her out as usual then she'll only be in there for a very short time. All he has to do is give a local pain killer (like at the dentist) then make a little cut and pull the pin out. I'm not even sure if he'll put in any stitches.
Earlier this week I had a pretty bad attitude about it (time, copay cost of surgery versus office visit, stress on her, sedation, etc.) but thankfully I had recently had a conversation with my friend, Sarah, about how we should never complain. If we love God and believe in His promise to us (as those with a right relationship with Him through Christ's death and resurrection) then why would we ever complain?? All things are within God's reach and all divinely appointed or permitted. I am going to do my part to trust in God and then also try to make it a fun day. God has so graciously given me a perspective of joy and thankfulness regarding surgeries. Honestly I actually enjoy surgery day as much as possible and look forward to special "fun" time with Noah while we wait and undivided time with Jordan for the hours in pre-op leading up to it then the fact that she lets me hold her the rest of the day afterward is nice too. I feel bad for her if she's in pain but thankfully modern medicine has made it bearable. The worst part at this point is her anxiety about it. If I tell her ahead of time she gets weepy and distracted and really talks about it so much. I just try to see it as an opportunity to pray with her and reminder her of Philippians 4 where we're instructed to "not be anxious about anything but in everything by prayer and petition presents our requests to God." When we do that "the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus."
Thanks for checking in - I hope to post pictures soon...
One last quick prayer request:
My mom met a man who puts together motivation videos for Kyle Maynard. Kyle was born without limbs but he has overcome major obstacles. The producer has followed our blog and wants to include photos and video of Jordan in their next movie. He's waiting so patiently for me to get pictures and video to him but in the past couple months Shannon's computer crashed losing thousands of pictures and video clips, my cd burner died on my computer which has a few pictures, my computer screen died last week along with my mouse, my camera charger is missing and I am struggling to get the video and pictures together for him on a dvd. I'm tempted to give up but it seems to be slowly coming together with the help of a neighbor and my brother. I'm praying that even with our busy medical schedule for Jordan right now that I will have the time and the means to gather what Takashi needs for this video. Pray with me please.

Thanks mom!!!!!

2009-05-03T15:29:00.001-07:00

I've been dying for a baby carrier to use for Jordan. Her strength and stamina are not so great due to her leg issues and surgeries as well as generaly lack of use over time. Because of this she won't walk far and has become reliant on me holding her. My mom and step dad gave us annual Disneyland passes for Noah's birthday (another post soon to come) and when we were at Disneyland one day I held Jordan most of the day. I could hardly get up the next morning because my back ached. When we were at Disneyland a mom saw me carrying her and recommended this baby carrier she had. It's an Ergo Baby Carrier and can carry children up to and sometimes beyond 40 lbs. They can be carried on your back, front or hip. They are very expensive so I enlisted the help of some professional Ebay folks to find a used one. Not possible. These things are in such demand you can't find a used one around.

As a Mother's Day gift my my so generously purchased one for me!!! I am totally beside myself and cannot wait to get it. It should be here by the end of the week - just in time for another day at Disneyland. We are so blessed!!!!

I posted a picture for you to see the beauty - I got the chocolate brown one on the left. Isn't it gorgeous???!!

Thanks mom!!!

Update on Jordan's Thumb

2009-05-03T14:24:00.000-07:00

I've been totally absent from my blog with high hopes of getting back into it on a more regular basis. I've had some major computer problems lately...computer crashing, losing thousands of pictures, losing my charger for my camera, my cd burner breaking and my computer screen dying - all while trying to gather pics and video for a chance to be a part of a great documentary project with a deadline that we are holding up. :( I'm going to continue to work diligently to get my stuff to the producer but then I promise I will be back at my blogging. I have so much to write but no time right now.

Quickly I will update however on Jordan's "new" thumb situation.

She had surgery Feb 17th to take bone from her leg to make a work-able thumb (her third surgery in the past 6 months...yet another reason I've been to busy to blog). The doctor made a thumb for her where she orginally only had a chip of bone and a little bit of skin. No pincer grasp, no palmer grasp on that hand.

We were ecstatic when we got the cast changed and saw a thumb! Yay! It looked much more proportional with her other fingers but I was concerned when she couldn't follow the doctor's directions to use it. She couldn't move it - at all. I've prayed through the past few weeks and hoped that with extensive therapy she'd be able to learn to use it. We were told by our OT that we'd have to increase therapy to three times per week (in addition to speech twice and physical therapy twice weekly) and I was discouraged but happy to do what it takes. My energy is waning and I'm desperate for a "normal" life with time to slow down and let the kids be kids. I had looked forward to that this summer but it looks like it won't happen yet. With time things will eventually slow down, Lord willing. One exciting thing is that this last visit Jordan was able to use her thumb to pinch - here's a picture:

Anyway, Jordan falls a lot and because of this her cast broke again and wasn't able to protect her thumb anymore so we had to go in again to have it changed. When they took it off there was a large sore that smelled and left green "stuff" inside the cast on her thumb. I thought at first that the cast had broken down the skin and gotten infected but then I noticed a raised ridge on her thumb that ended where the sore was. It was the pin that's in her thumb pushing its way through her skin! The doctor said the pin is pushing its way out but what it really looks like is that one of the many times she has fallen it has pushed back. The tip of her thumb isn't as stable and actually points up a bit. The doctor said that he could give her local anasthesia (a shot in the hand) then cut the hand and pull the pin out in the office (ummm NO) or we could schedule surgery. I opted for surgery to save all of us the stress.

However, after thinking about it I've left a message for the scheduler to see if the doctor can give her Valium in the office THEN do the local and pull the pin out. The thought of this turns my stomach and makes me wonder how I'll ever handle it but it would save a surgery and it would save us $250. We are scheduled now to go in Monday morning to see a resident for a pre-op for the Thursday surgery but I'm praying that we can schedule an office visit to remove it and also that Dr. Jones will be available rather than a resident. I don't AT ALL feel comfortable having a resident pull the pin out but I am certain Dr. Jones will be booked all week.

Please pray that we can schedule an appt with Dr. Jones and that he will be willing to prescribe her valium to do the "procedure" in his office. Also pray for me to able to handle it well for her (not throwing up or passing out!). I can handle a lot (stitches, scars, puss, suctioning breathing tubes, teeth knocked out...see previous post about Noah...etc.) but for whatever reason pulling pins out is beyond my threshold. :) My dad had to go with me last time to handle it. This time I am telling myself that with God all things are possible. :) :)

Pray and I'll post an update tomorrow after our appt.........

Long time no blog...

2009-04-25T22:23:00.001-07:00

So sorry to you all. I'm sure my readership has dwindled as things slowly chug along here without anything much new to report medically and also with my abandoning you all. :)
I've been really, really busy keeping up with things but I have quite a few things to post about. Check back in a few days for a few new posts and updates on Jordan and how things are going here.
Missing my blog,
Jen :)

A new name....

2009-03-28T23:01:00.001-07:00

Okay so I think it's time to change our blog name...we started this when we were 20 weeks pregnant with Jordan. We didn't know her name or anything about her other than what the ultrasound showed and what God's word promised she would be - a blessing, an arrow in the hand of a warrior, a heritage...
She now has a name (and has had the same name for 2 1/2 years) so it seems fitting to either change the blog to her name or come up with something more clever...
I consider this blog not just a place to update family and friends about Jordan's progress but also a way to post my thoughts and things going on in our family.
Any ideas? Suggestions??
Will you guys post a suggestion for a name or a direction to go with the new name? Post in the comments section if you have a minute.
Thanks! :) :)

Compass Kids Ministry Does it Again

2009-03-28T22:09:00.000-07:00

Jordan and I were at the park across from our house enjoying a relaxing morning while Shan was inside with Noah. Suddenly we see a Dana Party Supplies van pull up to our house. All the kids stopped and watched. It was so fun. The delivery guy pulled out two giant balloon bouquets for Noah and Jordan. Jordan was jumping up and down as we took them inside for Noah. He was mellow still and not quite himself but he was super excited. They are really into Disney stuff right now so it was perfect. The balloons were from our church's kids ministry. They are so kind and our church has been so good to us. The week we found out about Jordan our pastors wife called us (they were in a similar situation with their daughter who was born with Spina Bifida), Care Team volunteers were at CHOC with us as they took Jordan in for her first surgery, they've provided meals, a one on one helper when Jordan was at church after surgeries, cards, encouragement, prayer and all kinds of support for us. They are truly wonderful. We are SO blessed to be a part of Compass Bible Church.

Here's a picture of Jordan with her last balloon bouquet when she had her surgery on her foot. I thought I lost this picture but found it today on my camera so I wanted to post it.
Thanks Compass!!!!

For a quick update -
Both kids are doing so well tonight.
Jordan has been fine since Thursday but Noah seemed to be getting worse yesterday. By last night he was so lethargic and just laying on the couch, sleeping. He had a fever of almost 102. The doctor said not to call unless he had a fever of 102 or higher so I didn't call but that paired with a weird cough thing he kept doing was making me nervous. He woke up much better this morning (he and I slept until almost 9:00). We stayed home all day, resting and then he slept for over three hours during naptime (I tried three times to get him up). By tonight he is suddenly back to his old self. He ate food for the first time since Wednesday. He had soft mac and cheese and a popscicle and finally took a bath. He was playing around with Shannon before bed and really seems to be doing great. I'm so glad. Because he's doing so well tonight we're taking the kids to church tomorrow. We have a ministry fair so if he's not doing well in the morning Shan can take him to the car to watch a video while I work at the tables. We are dying to get back to church! With three surgeries (four including Noah's) in five months we've missed a lot of things, Church being first on our priority list. I'm looking forward to a time with no surgeries, no recovery, no pre-ops and less therapy. This summer should be really great.

Recovery Day Two

2009-03-27T21:46:00.000-07:00

A quick update for any of you checking in.
Jordan is doing fine still, of course.
Noah had a rough afternoon. He really needs his pain medicine (Vicodin) right on schedule or even a bit before and he isn't eating anything. He is only drinking Sprite. Today he finally had a popscicle but his hands were shaking so much. Tonight he has a fever and he fell asleep on the couch for an hour and a half. His fever is only100.5 so it's just a low-grade fever which is typical after surgery. I'm so lame - I forgot that I was supposed to be giving him an antibiotic so I hope I haven't caused any problems with him not getting it.
He's sleeping in our bed tonight so I don't have to get up to give him his medicine and so that we can hear him when he wakes up. Poor baby.
We're hoping that by tomorrow night or Monday he'll have turned a corner and be more like himself.

Jesus Loves Me...on meds.

2009-03-26T21:34:00.000-07:00

Here's a clip of Noah on anti-anxiety meds before surgery! Hilarious!

***** Scroll down to pause the music playing before you hit play on the video clip.

We're Home

2009-03-26T13:35:00.000-07:00

Here's JJ joining Noah in the pre-op room - she was so happy to see him and they were having a blast together this morning.

They got to wait in bed together and even have their "happy medicine" before being taken for surgery. They were hilarious!
Noah wanted this truck with him today. He informed me this morning that he could only take the one truck because he didn't have enough hands to carry more than one toy. :)

Oh my boy!!!

Shannon took Jordan home so she didn't have to hang out the four hours after his surgery and also so she didn't have to see him after the anesthesia. Noah got to ride in a wheelchair just like his sister gets to. Although subdued he was happy to be in a wheelchair like Sissy.

We're home and doing well, thankfully.

Jordan's ear tube surgery went well, as expected. It took ten minutes or so and her recovery was very quick. Noah's took 45 minutes or so and his recovery wasn't as easy. When he started waking up from the anesthesia he went crazy! I've been warned before about this but honestly I was not prepared. They told me that they normally wait until that part passes before letting parents in but since we've gone through surgeries so many times they assumed I knew. Oh man! He was hitting, kicking, screaming, thrashing and it took two nurses and myself to hold him down. I tried holding him standing up and he kept throwing himself backward. The nurses and I were sweating (Shan had already taken Jordan home so he wasn't able to help) and the strange thing is that his eyes were closed the whole time. It was like he was having a bad dream or something. Thankfully they gave him Demerol and he fell asleep. He woke up a new kid. He laid there and watched TV so mellow and just kind of sad until we came home. He's talking a little bit and says his throat doesn't hurt too bad.

The doctor told us that his adenoids were so big that he couldn't see past them. He was quite surprised they were so bad/big. I'm REALLY relieved that we had the surgery done. Hopefully this will help him sleep better and eat better.

Well, Shan's mom is here and I'm going to lay down with Noah for a nap.

I'll update more in a couple days.

Thanks SO much for praying! I SOOO appreciate it and it's super comforting to know during anxious times that people are praying. :)

This is a first...

2009-03-20T16:05:00.000-07:00

Tomorrow Jordan will have another set of ear tubes put in and she will have a special guest with her...her big brother. Yes the two of them are having surgery back to back starting at 7:00 tomorrow morning. They have the same Ear Nose Throat Doctor who was able to schedule them back to back.
Jordan will have ear tubes put in. It's relatively simple and quick with VERY little recovery time.
Noah will have his tonsils and adenoids removed. This is a fairly routine surgery with A LOT of recovery time. Thankfully the doctor offered a newer procedure for Noah. Instead of removing the entire tonsil he will cut them back as far as he can. There is a chance they will enlarge again later but the recovery is much easier and MUCH less painful. We opted for this since he's so young. We can deal with the full removal when he's older IF needed.
Jordan is set for 7 a.m. and Noah for 7:30. They'll be next to each other in the pre-op and recovery. It'll be weird since Noah usually comforts Jordan. This time they'll both need comforting. This makes me so thankful for Noah's health in light of Jordan's medical issues. The thought of caring for two uncomfortable kids, the logistics of it all and also double the cost of surgery seems like a lot to handle more than once. I don't know how our friends with triplets have handled all their special needs. I have SUCH sympathy for them.

Also you may have noticed the link on the right side of the blog...Pray for Stellan...this is a fellow blogging mom I follow. Her son has some pretty decent heart issues and could use prayer. Click on the link for Stellan, read her blog and pray.

I'll update the blog tomorrow afternoon.

Thanks everyone!

An Unexpected Visit with Dr. Jones and Our Xrays

2009-03-17T22:11:00.000-07:00

The one on the right side is the leg with the bone graft taken. Look at the smaller bone (fibula) and you'll notice a piece taken.

Here's the view with the pin in - that's the way it currently is.

Here's a shot of the thumb before surgery - you'll see that small chip of bone that's not even connected to the lowest bone in the hand. That's why her thumb was short and of no use. It just moved all around and was just skin basically.

Here's another one I wasn't shown by the doctor...I'm assuming this is during surgery and it's after they opened the thumb but before putting the pin in...notice the black line in the thumb and also how the thumb looks longer like it's being stretched. I think he opened it, stretched it how he wanted it then checked it by x-ray and placed the bone and pin in after that. So interesting how they do this isn't it??

This the leg/foot they took bone from...notice the toe bones are kind of small on this foot. This is the foot that is most affected and was attached to her leg by her toes when she was born.
_________________________________________

Today as I was getting Jordan dressed to go to speech therapy I noticed blood on my hand then realized it was on her sock so I took her sock off to find that her surgery site had opened up. Ugg. It was dark blood with some clear kind of stuff too and it just didn't look right. I called Dr. Jones who said to bring her in. We went to speech then killed some time at the Block in Orange before our appointment. Thankfully the bleeding stopped and she was still walking on it. He said that it wasn't infected and that sometimes surgery sites open up and if they do they can leak either just blood or also blood mixed with ________ (I can't remember the technical term for the fluid he was referring to). He just said to soak it often in a warm bath and to keep a bandage on it. He can't restitch it at this point so the scar will probably just not be as small or such a clean line as it originally would've been.

Another interesting thing...

Some of you know that I took a one day a week job working with infants and toddlers (and some school aged kids) who have a hearing loss. This is what my Master's is in and my credential and this one day position opened up, paying for our health insurance each month. I don't love leaving the kids each Wednesday but God has been VERY gracious to me in providing a job I really like. I've also had so many opportunities to really relate to these families who are struggling through the early years of caring for a child with special needs. One 2 year old I see is only days younger than Jordan and is also affected by Amniotic Band Syndrome in such similar ways (hands are similar and one leg but not her face - no cleft). The mom is my age and I just really enjoy working with her. Another mom has an 8 month old baby with Auditory Neuropathy so she is in the very early stages of grieving and adjusting to things. It's been more than great to be able to encourage her and really truly relate to and validate her feelings. She is such a joy to be around. So to get to the reason for all this info on today's posting...

Another mom is a Christian and has a very involved daughter who is also close to Jordan's age. Her daughter has life threatening issues and requires constant care and surgeries. I can't relate to this mom in the severity of her situation but it is nice to see God working in her life providing so much for her in times of need. I was talking to this mom today on my way to Dr. Jones' office and found out that she also had an appt with him - at the same time I did today. It was the strangest feeling that someone I work with, provide a service to would be at OUR Dr. Jones' office. I love that my two worlds come together all the time. I like that it gives me an opportunity to better understand these families' situations but also it helps them to understand that we can relate. God has given me a job where my struggles can be used and I can really truly relate to the women I work with and I am so thankful.

Scroll down to see all new posts...

2009-03-12T23:31:00.000-07:00

For some reason my posts got so out of order...bummer. They're backwards by order of the time they happened. Here's one more video and a little note letting you know to scroll down to see today's update on Jordan's doctor's appt with pictures of her new thumb.

Thanks for checking in!

More Pictures...

2009-03-12T23:13:00.000-07:00

My step-dad loves trains and so does his friend, Norm. We got to see Norm's own train museum in his basement and Noah about had a heart attack. It was amazing! This is such a brief glimpse of Norm's train hobby.

Noah digging for dinosaur bones at the science center - yes those are goggles. Cute!

Jordan didn't love the museum as much as Noah because it was harder for her to really do the hands on stuff and she's a bit young for it but she did like a few things.

Noah LOVED the Air and Space Museum. He totally got into the space section and now is the proud owner of two toy space shuttles, thanks to Gma. Jordan picked a bouncy ball but I picked out a book about Amelia Earhart and the world telling her she couldn't do things all the while she proved them wrong. Someday Jordan will appreciate it I hope.

Our trip to the East...

2009-03-12T23:06:00.001-07:00

I wanted a vacation from our hectic life and Jordan was in need of some distraction so we headed to my mom and stepdad's house in Maryland. It was a great week for them to spend time with my family. Shannon had school work and work-work to do so he stayed and I took the kids by myself. The flight went SO well and the kids were excellent. I don't have a single complaint about the travel. It was actually totally enjoyable and I loved spending the time with them.

At my mom's we got the kids' hair cut, we took them to the Baltimore Science Center, the DC Air and Space Museum, we had a family party with their cousins and mine over and they got to play in snow, build a snowman but also enjoy nice warm weather most of the time. It was such a great time. Thanks Mom and Dennis!!!!

What a fun night!!

2009-03-12T22:54:00.000-07:00

Jordan's ALL TIME favorite thing (next to eating) is her bath. We were actually able to get a waterproof cast today so she could take a bath. My mom offered to pay for it (insurance won't cover it) but thankfully they had a sample for us to use. I honestly cannot put into words how happy this makes me!!! Life is so much easier and so much more fun for Jordan.

There's the cast!

They stayed in the bath for over 45 minutes

and Jordan cried and cried when it was time to get out.

This was her first time standing tonight.

She's mobile once again!!!

2009-03-12T20:18:00.000-07:00

Today was Jordan's four week post-op appt with Dr. Jones. He took the casts off and checked her leg where they removed bone and also her thumb where they pinned the bone in to stabilize and lengthen her thumb. Right away when they took the cast off her hand Noah gasped and said, "It looks different Mama!" It was really cute. He was super involved, sitting up on the bed with us watching everything. When she was doing her usual freakout about the cast saw he kept saying, "It's okay Jordan, it won't hurt you." He kept rubbing her head and her hair when she was crying. At lunch afterward he said he wanted to sit by Jordan because she's his friend. I am constantly seeing good things come from a hard situation and it's so encouraging.

So the doctor was hesitant to leave the cast off her leg. He would've like to put another one back on but I couldn't bear it. When I told him she had a leg brace she wears all the time he was relieved and said because of that he would feel good about leaving the cast off. He said to be very careful of her leg (no jumping off the couch) but that she should be fine walking. She wouldn't walk in the office (no surprise) but thankfully is already walking all over the place.

Her thumb is close to twice the length as before. It won't bend but it'll give her a pincer grasp.

This scar is much bigger than we expected but well worth it.

It is almost a normal length for her hand! Yay!! Isn't it beautiful????

Isn't this picture funny? It's like the saying "A picture is worth a thousand words."

As much as I couldn't stop looking at her wonderful new thumb Jordan apparently didn't share the same sentiment. :) It was painful for her without the cast because she'd naturally try to move it and I think it's traumatic to see the stitches etc. (Noah asked why it was black too)

This surgery/recovery has been unusually hard for me and I think it's because the surgeries have been back to back - five surgeries in 28 months. I know families who have to get their kids through 5 surgeries in two months but this is still a lot for me. I am really looking forward to next spring - very little therapy by then, if any, and no more surgeries until Jordan's five or so (she'll have one more at three years old). We can be a normal family with our focus on typical fun things and Jordan can have the hard work behind her.

2009-02-24T13:37:00.001-08:00

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....

2009-02-22T21:07:00.000-08:00

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!!!!

2009-02-21T15:22:00.000-08:00

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!

2009-02-17T13:33:00.000-08:00

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...

2009-02-16T21:38:00.000-08:00

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!

2009-02-14T08:27:00.000-08:00

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

My Cup Runneth Over

2009-02-12T21:48:00.000-08:00

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

2009-02-11T22:10:00.000-08:00

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!!

2009-01-13T22:07:00.000-08:00

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...???

2009-01-12T21:47:00.000-08:00

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!

2009-01-02T21:51:00.000-08:00

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

2009-01-02T21:29:00.000-08:00

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

2008-12-30T22:07:00.000-08:00

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

2008-12-30T21:38:00.000-08:00

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

2008-12-13T09:33:00.001-08:00

Surgery Follow-Up Pictures - preview before showing your kids

2008-12-12T22:50:00.000-08:00

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

2008-12-09T22:06:00.001-08:00

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...

2008-11-29T22:56:00.000-08:00

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...

2008-11-14T21:58:00.000-08:00

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

2008-11-06T23:05:00.000-08:00

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.

Mommy/Daughter Date Night

2008-11-03T21:49:00.000-08:00

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!

2008-11-03T21:13:00.000-08:00

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!!!!!!

Back to her spunky self!

2008-11-02T22:03:00.000-08:00

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.

Home again, home again...

2008-10-31T20:39:00.000-07:00

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

Final Update for Today

2008-10-30T18:20:00.000-07:00

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!

2008-10-30T17:01:00.001-07:00

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!

2008-10-30T11:45:00.000-07:00

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

2008-10-30T08:53:00.000-07:00

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

2008-10-30T03:05:00.000-07:00

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!

Surgery Week Day One

2008-10-28T07:24:00.000-07:00

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

2008-10-28T07:19:00.000-07:00

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.

SURGERY WEEK OCT 2008!!!!

2008-10-27T08:21:00.000-07:00

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!

God Provides Again

2008-10-24T14:21:00.000-07:00

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

2008-10-24T06:49:00.001-07:00

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!!!

The Woodward Family

2008-10-21T21:31:00.000-07:00

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

2008-10-21T21:13:00.000-07:00

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

We're Back on...Again

2008-10-21T09:38:00.000-07:00

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

Scheduling Challenges

2008-10-20T22:21:00.000-07:00

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

Best Friends

2008-10-15T21:29:00.000-07:00

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

New Look!

2008-10-15T15:21:00.000-07:00

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

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

Thanks to all of you faithful bloggers!

Much love - Jen

Call + Response

2008-10-11T22:02:00.000-07:00

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

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

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

"utterly meaningless"

2008-10-11T06:54:00.000-07:00

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

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

Surgery is back on!!!

2008-10-06T21:07:00.001-07:00

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

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

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

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

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

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

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

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

The new surgery date is October 30th.

I will keep you posted as we get closer.

Thanks for praying! :)

Brief Update

2008-10-02T21:51:00.000-07:00

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

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

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

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

Prayer Requests

2008-10-01T20:45:00.000-07:00

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

Happy 2nd Birthday Jordan!!!!!

2008-09-30T07:05:00.001-07:00

Two Years

One Year

A Few Minutes

20 Weeks (3D Follow Up w/ Specialists)

Happy Birthday to Jordan Joy!

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

Josslyn Victoria

2008-09-28T21:04:00.000-07:00

Here's Noah and Jordan's cousin Josslyn.

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

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

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

Mommy's Little Girl

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

By: Josslyn Green

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

"Dear Jordan,

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

Love, Josslyn

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

Happy 2nd Birthday Jordan Joy!!!

2008-09-28T20:11:00.000-07:00

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

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

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

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

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

One more milestone for Jordan...

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

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

Dentist Follow-Up

2008-09-17T14:09:00.000-07:00

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

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

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

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

2008-09-16T21:40:00.000-07:00

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

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

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

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

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

History of ABS

2008-09-12T15:57:00.000-07:00

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

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

Surgery Scheduled!

2008-09-11T11:32:00.000-07:00

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

Update on Jordan

2008-09-10T22:45:00.000-07:00

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

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

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

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

Ripple Effect

2008-09-10T22:31:00.000-07:00

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

Bittersweet

2008-09-04T15:01:00.000-07:00

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