Isolation Week or Fun Family Time???

Okay so I started out this week not looking forward to our isolation. I love getting out of the house even if it's just to run errands and the thought of not leaving the house for seven days as we simply sit and wait for Jordan's surgery...not exactly a fun way to wrap up a dull week in my opinion. However, God has been so good to change my perspective completely and also to bless me with a few little outings (even if it was just the grocery store at 9 pm after the kids were in bed). As the potty training forced me to simply be near Noah I found myself enjoying spending time with him doing things he likes to do...read books together, play cars, build towers with his Wedgits and Legos, dance and sing to our favorite cds. Thursday morning Jordan, Noah and I were having such a great time dancing and singing that it really hit me how blessed I am to have this time with them. Today I used a gift card we got for Jordan's birthday (thanks Tobi and Brett!) to get a few fun things from Target's $1 section. I got a bunch of masks and dress up type things. It was so fun. The pictures above were taken after bath tonight. We were laughing so hard.

Barbara from our church's Prayer and Care Team called to get the specifics for the faithful prayer warriors at church and it hit me that her surgery is only a couple of days away. It made me that much more thankful for God's perspective of cherishing every moment with our children and realizing that they are truly GIFTS from the Lord. Jordan has added so much to our family and is such a joy to have. She is hilarious and such a reminder for us to encourage others to trust in God when circumstances make us doubt. Since her first birthday I've thought so often about the days when the doctors continually offered "termination of the pregnancy" as an option. If only they could see her now huh?

Potty Training Part Two...he's getting it!

So we are only on day three of this and he's got it! The first half of the first day was truly the worst but it has only gotten better. Basically he peed all over the place the first morning, only had a few accidents that afternoon then only a few yesterday all day and now today he went the entire day and night without one peeing accident. Amazing! He told us all day long that he needed to pee (but many times I had to remind him throughout the day).

The struggle at this point is going #2. He is having a real struggle with this. Yes, you will all want to wear shoes the next time you come to our house. :)

We will update the blog one more time before we go to surgery on Monday morning - thanks for checking in.

Potty Training...yikes

So today was the day...our first day of potty training. Some girlfriends told me about a book called Toilet Training in Less Than a Day. Yes, LESS than a day. I guess the idea is that they get the idea of going when they feel the need. We were all set up and excited this morning. I took Noah to Wal-Mart last week to pick out his big boy underwear, his favorite drinks, salty chips (to make him thirsty so he'd drink more thus have more opportunities to go on the potty), and favorite candy as reward for staying dry and going in the potty.

All the supplies were set out and my heart was prepared for this to be a fun day of laughing and learning to pee on the potty. Wow, was I off. By 10 a.m. I was NOT laughing. Noah was so excited about all the Sprite and Rootbeer that he drank and drank so much so fast I couldn't even clean up one mess before he'd go again all over the floor. By now he was SO hyper and all over the place I couldn't even get him to focus on what I was saying. He couldn't even stand still - honestly he was slipping and falling in his own pee and cracking up the whole time. His usual mellow self was screaching through the house yelling "I go on the potty!!!!!" (Check out the picture of him above holding the soda can - he looks like the Incredible Hulk about to burst out of his skin with soda running down his chest) The fun peaked when he had a "full" pair of underwear (yes, number 2) and I didn't know it so when I helped him pull his big boys down it plopped onto the floor and all over the potty and Noah. :)

Seriously, it was tough but by naptime he got it. He woke up in a Pull Up diaper asking if he was dry. He told me he wanted to go potty so he went...in the potty. Five more times in a row he went in the potty after telling us he needed to go and basically doing it all by himself. We hit a bump in the road when Grandma (Shan's mom) came over, Jordan was restless, the dogs were going crazy, we were trying to clean up after dinner and he had a few accidents.

Overall we are totally hopeful about this potty training business at the end of our first day. We need to just consistently pay close attention to him and help him remember to go (ask him if he needs to go). The worst is over even though it'll be a lot of work still as he gets into the habit.

SO sad that our baby is growing up so quickly.

We'll keep you posted and, of course send updates on Jordan's surgery as things happen. Right now we're just praying that she stays healthy and all goes as planned.

Jen

Jordan's Pre-Ops are done...

Tessa's Update:
Thank you for praying for the Fieldhouses if you did today. I saw them this afternoon and got to see little Tessa. It brought back so many memories from Jordan's first surgery and made me so thankful to be able to visit them and do what little I could to support them. Their surgeon removed some bone and moved the front of her mouth back. He also connected her nose to her lips but is going to wait to finish the lips for a few months. Keep praying and check out their blog for updates.

Jordan's Update:
I took Jordan to UCLA this morning for her pre-op with her hand surgeon. He is hands down (ha! No pun intended), the nicest, most down to earth doc we've got (although we love all of our doctors and specialists).

Here's the procedure plan...
Henry Kawamoto - Plastic Surgeon
- Closing the palate
- Removing the small bump by her affected eye
- Clearing her blocked tear duct in the affected eye (it may end up being more than a simple clearing of the duct, depending on what he finds in there)

Neil Jones - Hand Surgeon
- Seperating her index and middle fingers on her "bad" hand and widening the web spacing between her pinky and ring finger on that same hand. She'll have a cast up past her elbow for two weeks.
- Her toes will be seperated and "cleaned up" on her bad foot too but no cast will be put on. He'll just wrap it well. I'm concerned about her foot not being protected while she tries to crawl around (I wonder how she'll crawl w/ a cast on her arm. I guess I'll have to post some videos on the blog. :)

It sounds like the surgery may be around four hours and will start first thing in the morning Monday, the 22nd. We aren't shutting ourselves up in the house but we're avoiding the nursery and hoping both kids stay healthy.

Also - we're embarking on a new chapter in our lives...we're starting potty training on Monday with Noah. Yikes. I'm SO sad that my baby is going to be wearing underwear! No more rustling diaper sound when he runs around the house! I'm really dying over this. I know that they can't stay little forever but this has just flown by. We shall see how it goes. I have a feeling it's going to be full of some funny stories so check back often for updates. :)

I hope this finds you all well!
Jen

Please Pray for Little Tessa Joy

Today I have a prayer request for all of you faithful warriors. I know that only a few of you are blog addicts, checking people's blogs daily, and therefore many of you may read this and feel it's too late to pray. If you get this tonight or tomorrow please pray for little Tessa's surgery and if you get it later please pray for her recovery and for her parents as they work to feed her and tend to her needs.

Many of you met Tessa Joy Fieldhouse at Jordan's party. Please be praying faithfully for her and for them through this.

Their blog is www.thefieldhouses.blogspot.com and the link is on the side bar of this page.

Here's an excerpt from their recent blog posting...

Mark, Tessa and I met with Dr. Wells on Thursday afternoon and got a little bit more information about Tessa's surgery.
Here are the FACTS: - The surgery will take place this upcoming Friday (October 12) at 7:30 in the morning.- It will take from 1-3 hours depending on how well it's going.- Procedure: right now Dr. Wells plans on taking a piece of bone out from the roof of Tessa's mouth so her upper lip will drop down and back a little bit. If he feels that it looks good, he will then put a metal pin up through her lip to help stabilize it. He then will POSSIBLY close one side of her lip (the closer of the two). This is new information to us. We thought for sure that he was going to close 1 side of her lip...he told us that he would like to have "options" depending on how things go. We like the conservativeness of Dr. Wells. If he needs to go slower to make it look just right, so be it.- Tessa will most likely spend 1 night in the hospital. They only allow 1 parent to stay with her, so I am going to stay...I (Allison) will most likely sleep better in a hospital setting.- As soon as Tessa is out of surgery she will have to wear arm restraints for 2 weeks. :( Poor thing! She's going to need all the loving she can get...so everyone is invited over to the house to help cheer her up and give her EXTRA loving. Thankfully she'll have BOTH grandmas around to spoil her. Yes, my mom is coming out on the 14th to spend 4 days with us. :) We are so excited!- Feeding will be yet another issue. Her obturator is coming out this Wednesday and we're going to go back to the sirenge feeding days. Again, 2 weeks of this. Hopefully she'll adapt well.
Please, please, please keep us all in your prayers this week leading up to Friday.
(Tessa: bravery, quick recovery, little pain Us: confidence in Dr. Wells, acceptance of Tessa's new look, patience with the journey we are about to embark on, FAITH Dr. Wells: a steady hand, wisdom, a clear vision of what Tessa's lip will/should look like)
It gives me so much hope knowing that God is in complete control and knows how all of this is going to turn out. Fortunately none of this is in our hands but in His. Sure, it's going to be very difficult getting used to a new look on our precious little girl's face, but no matter what she looks like, she's still going to have the sweetest spirit glowing all over her face!

She crawls!!! She crawls!!!

Jordan FINALLY started crawling today at 1 year 4 days! We've been working really hard and when her therapists saw her today they were clapping and cheering. The whole room was ecstatic. It was so much fun.
Enjoy the show!

Surgery Update and Palmdale Visit

Well, thanks so much for your prayer for our appointment. The doctor got my hopes up by talking to his colleagues about how he is going to do the eye, also that he will fix the nose and the lip. He was talking as if he already planned on doing it during this surgery. I was ecstatic. I was thinking, "God you are SO good! I didn't even have to ask!" However, when he was all finished he told the nurse to schedule surgery for her tear duct clearing, her palate and just the little bump on her eye. I was so confused. Apparently he was just saying what he would "eventually do." I was completely deflated. I asked him if he would do it, he said he wanted to wait to repair it until later but didn't really seem to have any good reason for it. I instantly thought of something my father-in-law said recently. He was talking about how quickly we say how great God is when things go well/go our way but how slow we are to talk about His goodness when things aren't so great in our lives. Here I was being the classic example of that. I was certainly NOT "rejoicing always" or giving thanks in 'everything' as 1 Thesselonians 5:16 tells us we are to do (in fact that's the verse Sarah used for the devotional at Jordan's shower - how appropriate). Here I was disappointed and pouty like a child not getting my way. Rather than rejoicing in God's sovereign hand in my life I was fearing things of this world...that our insurance wouldn't cover Dr. Kawamoto later, that he would retire, that Jordan would be emotionally scarred by the things people say...I could go on but basically it was a lack of trust on my part. I am disappointed in my response but thankful that we have God's word to fall back on and to correct us. 2 Timothy 3:16-18 says, "All scripture is God-breathed and is useful for teaching, rebuking, correcting, and training in righteousness so that the man of God may be thorougly equipped for every good work."

After the appt Noah and Jordan and I went on to Palmdale to visit my family. My grandma has Alzheimer's and Parkinson's so we are really making an effort to get the kids up there more to visit. Noah LOVED it and had the best time! He went to my dad's house first and learned to feed the horses and mules, learned about gardening (of course he would not eat the veggies), led the horses around and even sat on a couple tractors. He and Jordan were such a joy for my grandparents and I hope, a breath of fresh air like they are to me, with their exhuberance and energy. We got home late last night and are off to Scooter's Jungle with Noah today as a reward for his excellent behavior at the doctor's yesterday. He was such a blessing!

Jordan Turned ONE!!!

It's hard to think back to bringing her home one year ago.

Shannon was at the men's retreat through our church (Compass Bible Church - see link on our page) and I was supposed to meet the wives for a park date with the kids. I started having some serious contractions at around 8:00 in the morning. Somehow I was in enough denial that I was able to get Noah bathed, dressed, fed and loaded into the car and I even packed my hospital bag. As I was getting the car loaded and Noah was eating breakfast in his high chair I had to lay down on the ground in the kitchen because I couldn't stand up anymore - Noah was laughing SO hard thinking I was playing a game. I managed to drive myself and Noah to the park all while putting on lipstick and talking to Staci along the way (yes I'd put the phone down during a contraction - I'm not that much of a road hazard - hahaha). When I got to the park I had no idea how I was going to get Noah over to where the other moms were without having a contraction and having to lay down in the wet grass while they're all watching me walk up (they had now gone from 6 minutes apart to like 2 1/2 minutes apart).

Praise God I have some AMAZING and dear friends. They took charge. I only had one moment of a decent cry from the pain and just the thought that she was finally arriving and that there were so many unknowns. Sarah Cox took me to the hospital while the resident nurturer, Rebecca Millsap took sweet Noah to her house. Sarah insisted I'd be in labor for 12 hours or so and therefore I needed a shake and protein bars from Mother's Market. I sat in the parking lot having some MAJOR contractions, trying to remember what Sarah had just taught me about breathing through them, and here's Sarah hemming and hawing over which Power Bar to get me. Oh we laugh today!!!!
Even funnier is our hospital check in. Sarah is wearing a baseball hat and a grungy boy-type tank top while my hair and make up are fresh with a pretty sweat suit on. We were certain the check-in nurses assumed she was the "father" and it sent us into torrents of uncontrolled laughter. In between my 2 min apart contractions we were falling over laughing and the nurses were getting annoyed. :) I'm cracking up writing this! Our nurse insisted all I needed was a little water and that I'd be going home in an hour...I tried telling her that was NOT in fact the case. She didn't listen until she finally checked and I was dilated to an 8 or something close (is that right Sarah?). I had a near nervous breakdown over the thought of no pain meds so they rushed us in and made sure I got the epidural. I asked Sarah if she wanted to stay for the delivery and she was (oddly) overjoyed at the thought. I could not for the life of me think why she would want to see that, especially since I've seen it before in the mirror with Noah's delivery. It's really not a pretty site. She wanted to though and it was truly such a comfort having her there. While all of this was happening we found out that our friends, the Youngmans, had their triplets and were downstairs. Their daughter was 1 pound, not expected to make it and their two boys were 2 pounds. We cried for them and prayed for them and had an amazing perspective throughout our own delivery thanks to them.
Shan finally arrived by now and in about 20 more minutes I pushed a few times and out she came...beautiful, healthy, perfect, made in God's image! It was so great to finally see what she looked like. We felt a mixture of emotions - overjoyed to have our baby girl yet sad for the struggles she would be facing, and comforted by God's grace to sustain her throughout and to use her trials for His glory and her good.
One year ago...wow. Thanks to everyone for being here for us this year and for loving Jordan. Please continue to check the blog for updates this month.
Love, Jen

Happy 1st Jordan Joy!!!!

I was procrastinating getting to bed and was researching info on palate repair. I came across this info in a GREAT article which actually quotes Jordan's surgeon. This site gives the best overview of the cleft lip and palate situation I've seen.

http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=502&action=detail&ref=49

Surgery to repair the cleft palate generally occurs when the child is about 1 year old and involves undermining mucoperiosteal flaps from the left and right sides of the palate and suturing them at the midline, and reconstructing the throat muscles. The most significant reason for repairing the palate is to preserve speech, explains plastic surgeon Henry K. Kawamoto Jr., M.D., D.D.S. “A child can have a hole in the roof of his mouth and still be able to eat OK—they adapt,” he says. “But with a cleft palate, they will never be able to communicate in terms of speech. Repairing the palate is, for that reason, very important.”

Another site I found, http://www.nagerormillersynd.com/NewArticles.html talks about how to deal with having a facial "difference." It's really great!

Also wanted to let you prayer warriors know that Jordan will not be having the eye surgery to clear the blocked duct tomorrow. We are going to have her plastic surgeon do it at the next surgery on 10/22.

Thanks and we'll post 1st bday pictures and pre-op udates as soon as possible.
Jen

Two Peas in a Pod

How different can two kids be?? Noah hates having his hands dirty and is the pickiest eater around while Jordan relishes messes and gobbles up anything we put in front of her. The true test will be the first birthday cake. Noah cried when we put his hands in the frosting. We shall see what little JJ does with hers.

These are from some fingerpainting we did today. Noah was rather perturbed when we forced his hands into the paint while Jordan couldn't get enough. They are both so funny and so cute! Each so great in their own ways.

Mothering...

I had planned on briefly posting dates and details of Jordan's upcoming surgeries and development but decided against it. Following in the footsteps of most of my dear friends I will post my thoughts, my recent revelations and how they all tie into this next season or our life here.

I'm reading the book The Mother at Home by John S.C. Abbott and although it is taking me months to get through 123 pages I'm soaking it up (I sneak away any second I can to read a paragraph or a page). A section that struck me tonight is fairly long so I'll quote sections for you:

"The parent must strive to be herself just what she wishes her child to be. She must cherish in her own spirit those virtues and those graces which she desires to see as the embellishments of the character of her child...Would you have your children look to God sincerely, affectionately, cheerfully, as the Father and their friend - their sympathizer in joy, their comforter in sorrow? Lead them to do this by your example. Let them see this spirit in you...When disaster comes and sweeps away your means of luxury and even of comforts, when disease takes you from the busy cares of the household...then is the time, in which to show the loveliness and blessedness of confidence in God. A smile upon your countenance, a glance of confiding affection in your eye, a word of calm submission from your full heart, will then go to the hearts of your observing children, with great and effectual power...What child ever ceases to remember the life, the daily life, of its father and mother...this is your hour of conflict. Gain the victory yourself, and your child will gather strength from your success to struggle with her own temptations and sins...Say not that the annoyances and trials which you have to bear are too great to always be endured with equanimity. God lays upon his children no intolerable burdens." (page 77 - 78)

This section is both convicting and encouraging to me now. As I sit here looking at my calendar for the next two months (not to mention Thanksgiving and Christmas following suit) my eyelid continues to twitch. Ha! You think I'm kidding. Stresses of daily life, pre-op appointments for Jordan, well baby check ups, shots for her, blood tests, two surgeries, and her blessed first birthday rapidly approaching I find the need to, once again, remember who it is that has ordained all of this for His glory and my good. I need to remember that in challenge I should be most joyful. I am at home training two children in righteousness (trying at least) - what an opportunity this current series of trials presents!! I am even better able to put my words into practice for them to see my faith and trust lived out. They will remember these days and my actions and, Lord willing, take heed of my instruction.

John Piper's book What Jesus Demands from the World, in a section titled "Our Joy is Not Mainly in Prosperity but in Obedience and Pain" he writes this, "What's wrong is that the aroma of suffering is missing. For Jesus the demand for joy is a way to live with suffering and to outlast suffering. Therefore, this joy is serious. It's the kind you fight for by cutting off your hand (Matthew 5:30) and selling your possessions (Matthew 13:44) and carrying a cross with Jesus to Calvary (Matthew 10:38-39). It has scars. It sings happy songs with tears. It remembers the dark hours and knows that more are coming. The road to heaven is a hard road, bit it is not joyless." (p 87)

I have a friend whose husband is dying and is in constant pain. This has been going on for a very long time along with many, many other challenges in her life. Through God's grace she has found peace and joy in the midst of it and is a shining example to many wives and mothers I know. As I look at her life and then examine my own I find that the peace and joy is oft missing. Efficiency and order have been my idols. At the beginning of this new season I am praying for that to change. As you pray over our requests remember this present struggle of mine.

One last quote from John Piper, "We will take heart from the fact that Jesus offered himself to die for the forgiveness of our failures to rejoice in him as we ought...'The Son of Man came...to give his life as a ransom for many' (Mark 10:45). So our joy has this solid foundation: Jesus shed his blood so that our failures to rejoice in him might be forgiven." (p 89)

Dates:
Sept 25 7:00 a.m. - Jordan has her surgery scheduled to clear the blocked tear duct in her left eye. The opthamologist thinks it will be a routine clearing of a blockage in the duct but I am concerned that he will find that the blockage is due to an anatomical defect caused by her clefting (notice that eye is pulled down - our plastic surgeon says it is basically a third level clefting and that he wants to wait to reshape it until she is five). Please pray that it is a typical blockage that can easily be cleared. This is thankfully an oupatient surgery.

Sept 28th - Shan leaves for the Men's Retreat through our church (Compass Bible Church in Aliso Viejo)...yes the same retreat he went to last year but had to come straight to the hospital the next morning because I was in labor four weeks early.

September 30th- Jordan's 1st Birthday! Can you all believe it??? It's been the longest year and the shortest year all at the same time if that makes any sense.

October 5th - I leave for the Women's Retreat.

October 22nd - Jordan's next surgery. This one is a biggie. She will have her hard and soft palates closed by Dr. Henry Kawamoto. I still cannot believe my eyes when I read his name on our paperwork. Before she was born I said, "He's the best, we'll just have to get him. We'll find a way." Through a series of events that I saw as frustrations we eventually ended up with him, to no credit of my own. It's an amazing story too long to put in here tonight.
Jordan will also have her index and middle fingers separated and her toes "worked on." I am not sure what Dr. Neil Jones (the other doctor we said we had to have - yes all part of that great story) will do with the toes but I'm hoping they end up looking and functioning as normally as possible. He is skeptical that they will stay separated but I'm hoping he's wrong.
Someone forgot to tell Dr. Jones that I've waited a long time to paint my daughter's toes!
This surgery will involve both doctors and hopefully only one night at UCLA. My mom will be in town with Noah, thankfully, and we're sure that we'll be ready to get home afterward. As some of you know, there is no rest in a hospital - ironic. We will be hibernating for a week before the surgery so please be praying that Jordan does not get sick as they'd have to postpone the surgery.

Prayer Requests:
- That all of our pre-op appts and blood tests will go smoothly and will be positive.
- That Jordan's eye surgery will be simple and routine with no problems.
- The our family will stay healthy leading up to the surgery so that it will not be delayed.
...her speech is already delayed due to her palate and she has trouble eating hard food and has choked many, many times. It is very stressful for me and if we have to reschedule it could me months before they are able to do it.
- That we will be able to focus on the gift we have in Jordan around the time of her first birthday, cherishing this life that doctors said we could take. I can't believe when I look at her now that doctors told us we could kill her if we wanted to. A 'simple' decision in a time of great stress and she wouldn't be with us today. Amazing to think about.
- Jordan is still not crawling or pulling to standing and just has some funny things she does that we and the therapists are working on and watching. Pray that her development continues to catch up.
- Pray that I will be a godly example of joy and peace and self-control to my children as I am working to raise them up to love the Lord. That they will see Christ's love in and through me in the details of our everyday lives.
- Please pray for our friends' daughter, Tessa Joy, who is having her cleft lip surgery on October 12th at 7:30 a.m. You can see their blog at http://www.thefieldhouses.blogspot.com/

Tremendous thanks to all of you who faithfully check our blog even through my dry spells when I don't post anything.

Jen

Ahhh Summer Vacation

Click on them to enlarge~

Hi everyone! I've been feeling guilty for not updating our blog very regularly. Since we're on vacation I have a few minutes to spend on the computer....just a few though because I would honestly rather be out at the beach than in here on the computer - n0 offense. :)

We're in Avon, North Carolina at the Outer Banks. We're here with my mom, stepdad and brother. My mom's friends let us use their house for the week and it's been really nice. Shan hasn't had much surf time but it's been nice having him all to ourselves without the distraction of those darn waves. Our days have mostly been spent at the beach - my brown leathery skin is proof of it. Noah got his first boogie board (I've heard it's a "boogie" board until he's older when we'll have to rename it "body" board), Shan tried teaching my uncoordinated self to surf (didn't work out so well - I flopped around out there and couldn't even sit well on that thing), Jordan has been playing in the pool and at the beach, we played mini golf (Noah now calls himself Tiger Woods), ate ice cream, ate fresh fish Dennis caught and even spent some time with the Veales who happened to have a house a few doors down (our friends from church). It's been a wonderful break from the busyness of our lives. We will spend a couple days in DC at my mom's then head back home to start fall 07 and get ready for Jordan's next surgery. I'll send updates on that once we get back and things start happening. We have many, many appointments in September and the beginning of October before we hibernate leading up to the surgery. We will be praying she doesn't get sick causing them to postpone the surgery.

I'm going to post some pictures from our trip on our slide show here for you to see.

Thanks for checking back!

Jen

Here she is with her first word! Yes, sign language counts. She is starting to use it now to let us know she wants more of other things than just food...more toys, more playing, etc. So fun! We're working on "all done" and "please" next.

Well, I finally figured out how to put a photo slide show on my blog. I'm a bit behind the times. It took me so long to get this one as is that I will have to change the format and add more current photos another time. Enjoy the slideshow and check back soon for more photos, updates on Jordan, her upcoming surgery and and weekly insights in my life!
Jen

Hello again! Time for a quick update...
Jordan is officially 9 months old tomorrow (8 months if you consider she was one month early)!


We had our first flight as a family last week. Gma and Pop Pop (my mom) flew us to Colorado to see Pop Pop's family. It was great getting to spend time with them. Thankfully, Jordan's ears did fine on the plane thanks to her ear tubes. Unfortunately, flying with two kids two and under wasn't as easy. Yikes. Remind me of this in a year or so when I say I'm ready to have another baby.

The day we got back I took Jordan to meet her new craniofacial surgeon. Dr. Kawamoto agreed to see her and we are SO thankful. I'll post some links to a few articles about him when I get a chance. His plan...
Palate - He wants to close her palate in October at the same time that Dr. Jones works on her fingers and toes (the roof of her mouth from the soft palate in the back up to the gumline, leaving the gumline open). He wants to wait to work on her left eye until she's 5 or 6 years old and also advised we wait to clear that blocked tear duct until then too (with her opthamologist).
He didn't talk any farther down the road but she will probably have her gumline worked on at age 7 or so.

The tentative date for her next surgery is OCTOBER 22 where two fingers will be separated, possbily releasing some of the constriction bands on her other fingers and getting rid of some excess tissue. Dr. Jones will also separate the toes on her right foot then. The prognosis doesn't sound good for the toes since they tend to grow back together after separation (I guess it's because they naturally stay together whereas the fingers move and stay apart). The palate will be repaired then as well.

Since it gets confusing I'll give my best guess for her surgeries...
1 yr: The upcoming surgery (palate, toes, fingers)
2 yrs: Possibly removing index and middle fingers on left hand, extending the short thumb using a bone graft on right hand (from hip??).
5 yrs: Begin work on eye (duct and position and shape of eye)
7 yrs: Gumline repair (usually done when adult teeth start coming in I think)
Late teens: Final cosmetic lip and nose revision to "fine tune" the nose where it is uneven and also add fullness to the top lip.
Possible extra: If she ends up with an underbite due to the palate problems she will potentially need jaw surgery sometime.

Countless people have said, "She had her surgery so now she's done right?" and it just gets confusing to go into it all so hopefully this schedule will help.

As always, we appreciate you checking in on the blog and are so thankful for your prayer and support. Since summer should be a little slower around here I am planning on just posting some non-update related stuff on here and making it a kind of family blog for us. Look forward to some great posts on the happenings in our lives. :)

Prayer Requests:
Jordan's Development - She is on track cognitively and socially but is about two to three months behind in her gross motor and fine motor. Her Reflux is SLOWLY getting better and she's starting a new medicine to speed up her "intestinal transit time." Pray that it works and she stops spitting up. Praise that she is waving now, standing while we hold her arms, and even starting to use her first sign, "more." Praise also that she is learning how to eat without a roof to her mouth. She sneezes less and the food comes out of her nose much less too. Yay!
Her speech and language is quite behind. She seems to be about 3-4 months delayed and is not babbling yet (bababab, dadadad, lalalalala, mamamama).

Thank you again for checking in!

jen

Here are a few recent pictures for you all to see. The first one is of JJ and her Papa (Shannon's dad) when we went to Doheny for a beach day with Jordan and Noah's cousins. We topped it off with S'mores. Yum! The next one is on Father's Day - Jordan and her Aunt Vel on Father's Day. The bottom shot is of Shan and Jordan Joy on the airplane during her first flight. We flew to Colorado to Pop Pop's family.

Here are few from Jordan and Noah's first bath together and another one from our typical Saturday morning cartoons and breakfast in bed.

jlg

Greetings!

Well we are nearing the official start of summer and Jordan is doing so well. She is still spitting up a lot but she is finally starting to (sort of) get the hang of eating cereal with a spoon. She LOVES gnawing on peaches and bananas in her baby net chew thing (you stick soft food in a mesh bag with a handle for infants to chew and suck on -they get the food out but not in pieces large enough to choke). She's eating oatmeal cereal with applesauce every day and is finally not sneezing it all out (that happens when you have no roof to your mouth). :)

She is sitting so well now and loves playing with toys. She's using her hands really well and is just as happy as can be - most of the time.

She will be taking her first plane ride June 21st to visit Pop Pop's parents in Colorado. Hopefully her ears will handle it fine.

As for biggie boy Noah, he's now in a toddler bed (aka Big Boy Bed). So far so good with that. We took him camping for the first time last week. He loved it but the sleeping didn't go so well. To be expected, I suppose.

I hope this finds you all well!

Jen

Okay so some updates...

Yesterday (5/22) I took Jordan to have her Upper G.I. (checking to make sure her stomach and her throat are all working fine). They said everything looks fine but it seemed that the barium took a long time to move from the small intestine. No big deal - we'll find out more details at her follow-up appt. They also did a swallow study, where they had me feed her rice cereal mixed with barium while they used an x-ray machine to see what happens to the food as it goes into her mouth (does it go up into her nose, does she breathe it in, etc.). She did great! It's kind of weird that the first time I'm spoon feeding her is while she's strapped to a chair with an x-ray machine and five people watching. She was a champ! She was so tired yet still drank that barium down - even while it was pouring out her nose since they had her drink lying flat.

Today (5/23) we took her to UCLA to meet the infamous Dr. Neil Ford Jones. He asked detailed questions, looked at the x-rays, and said that he's "willing" to do the surgeries. When I asked him if he could honestly say that he is the confident that he can do this he basically said that he is competent but not confident. I can appreciate that. As for the original "plan" to remove her thumb, Dr. Jones says no way. He and his residents said absolutely not to remove the thumb. They said that she has enough muscle to grip and that they wouldn't even consider it.

Here's the new "plan" as Dr. Jones sees it (the best that I can summarize it):
Around 1 year - He will separate the index and middle finger of her "bad" hand (look at the third picture down on the last blog I posted). We will hopefully coordinate with the UCLA Cleft Surgeon (Kawamoto or Bradley) to do the palate through them at the same time. Dr. Jones will also separate her toes then (poor prognosis though becuase toes tend to reattach after time).

Closer to 2 years old - He will monitor the amount of use and movement she has in those two fingers. His best guess is that they won't be of much use and will just "get in the way." He's thinking he may then have to remove them (yes, remove her index and middle fingers) and she will use her pinky and good thumb (on her bad hand) to pinch with. He will also, at this time, probably use a bone graft to add length to her short thumb on her good hand.

I know it's so confusing and hard to explain. Explaining it in person is much easier.

That's our update for now. We're tired and it's been a long day but we wanted to send a note for those of you checking in.

Oh! I almost forgot - we went to lunch in Westwood Village today (so fun) and little Jordy sat up all by herself in the highchair! Yay! Such a big girl!!! She loved chewing on the edge of the table and her plastic spoon we've been letting her chew on while she's gearing up for the big feeding of rice cereal she's about to get...finally!

Praise the Lord for He is GREAT!

We did not have one single hitch in our insurance approval for Dr. Jones at UCLA (for those of you who know anything about our story so far with insurance and doctor hassles, you know that this is a feat only the divine could handle). I have spent literally three hours a day on the phone fighting doctor's offices and insurance companies for weeks at a time for each procedure Jordan has had done. I have had complete meltdowns, crying on the phone with these people who refused to help me and who had no clue what they were doing. We have a case manager now who is helping us through this and a pediatrician's office who gets things done.

Okay so get this! The minute I got the approval for little Jordan Joy to see Dr. Jones I called his staff to set it up. The woman on the line said the soonest she could do was July 12th! That is two months away and from what I've read, there could potentially be a timeline that these surgeries need to be done by. What if we wait two months to see him, he can't do it and we have to start all over again? Not possible. She connects me to another woman in his direct office who puts me on hold. While I'm on hold I'm returning emails, surfing the internet, etc. Finally it dawns on me...Sarah Cox, at my shower did a devotional on 1 Thessalonians 5:16-18 "Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus." She camped on the verse - "pray continually" which means to pray persistently (imprudently, urgently, with audacity, earnestness, boldness and relentlessness - taken from John MacArthur's Bible Commentary) for the big things and the small things. I decided to start praying right then, on hold, for an appointment next week. The first thought I have is, "Maybe I shouldn't be greedy. I should probably just pray for an appointment sometime next month. I should probably just pray that we will get an appt. sooner than the July 12th appt." But NO, I started praying specifically that God would give us an appointment NEXT WEEK, knowing that would be next to impossible with this doctor's schedule.
Can I just say that you will all need to be praying for Dr. Jones' wisdom and discernment next Wednesday morning at 10:30???!!!! Yes - we have an appointment for next week.

This alone may not prove the power of Christ to you (who do not believe) but I am telling you as one single example of God's divine and loving hand in our lives. Constantly throughout our struggles with Jordan, God's gifts of compassion and mercy have been evident. These are the tangible benefits of a relationship with our Creator in the same way that our JOY and peace through the difficult times are. Again, I'll restate that our Joy in Christ does not guarantee that we'll be without trials and sadness (obvioulsy) but that our hope lies in much more than this life and also the fact that He is in every detail of our days.

I'm going to continue praying that every person reading these blogs will someday, in this lifetime, see God as their Creator and Jesus as their savior. When you do, be sure to email or call me to share the blessings in your life too.

Thank you for reading this and for always supporting and encouraging us!

Jen

As an update...

We met with Dr. Moskow today. He was so great! He was compassionate yet competent and was humble enough to admit that he is not able to do the surgery on her hands. We told him about Dr. Neil Jones (UCLA), who we've heard fantastic things about, and he suggested that we try him next. He's concerned that we are going to have a hard time finding someone able to do it. Our case manager (insurance) told us today that we can try Dr. Jones and if he can't do it then we can try the next option (????). They even said that if there are no doctors available within driving distance that insurance would, as a totally last resort, pay for us to travel - Praise God.

It was a pretty stressful morning but I came out of it feeling so much better than before. We finally got to see x-rays (we've been asking for them for a while) and now know what bones are there (or not there). I also came out of it really able to give this decision up to the Lord who already knows the end result. It's easy to start putting my trust in doctors rather than the Great Physician who can do so much more. I started to feel like Jordan's fate was in Dr. Moskow's hands this morning but came away seeing our visit with him as a blessing and a reminder that God is in control and that there are doctors out there who care for us as people and are seeing this as SUCH an important decision for Jordan. Dr. Moskow reminded us that her hands are never going to function or look "normal." We realize that but are working hard to give her the best results possible.

Please pray that Dr. Jones will look at Jordan's reports and x-rays and will know whether or not he is the best one for this surgery. If not, our personal second choice would be to see someone at (or someone who has been trained at) the Hand Center in Louisvill, Kentucky. The first hand transplant was done there but I'm not sure if anyone works on babies or who that would be. Please pray that we will feel confident with whomever God has chosen for little Jordan and that the right surgeon will do this for her at the right time and also that we will be able to pay for it and manage all the details (travelling, juggling commitments at home and work etc.).

Our new pediatrician's office has been a GIANT blessing too. I'll give a little plug for all of you Mommies reading this. It's TLC Pediatrics in San Juan Capistrano - we see Dr. John Carruth. They have a totally efficient front office staff, a great referral coordinator and their nurses know our names and return calls within a few hours.

Anyway - I will be posting some clear pictures of her hands soon.

Thanks for reading the lengthy posts.

Love, Jen

Just a brief update with a few prayer requests and a few praises...
Jordan is doing well. Her therapists and infant specialists say that she is within the 7 - 9 month range in everything except those areas that have been affected by her physical limitations since birth (including Reflux, surgery, limb differences, etc.). They are not suspecting cognitive delays at this time, thankfully.

Her Gastrointerologist wants to do an Upper G.I. to find out why she's still spitting up so much and also a swallow study before we start spoon feeding so that we can know if she'll aspirate the food and if there will be any other problems with eating since the palate is still open (she has very little roof to her mouth).

She has another ear infection but were treating it with drops this time which is better than oral antibiotics.

Her current Orthopedic Surgeon said that his plan so far is to remove her short thumb on her "good hand" and move her index finger down to act as a thumb. She would then have a four fingered "good" hand. Her more affected hand has a great thumb but many problems with her other fingers. He hasn't said what he would do with that yet. We've requested a second opinion with a doctor at UCLA (Neil Jones) but our HMO is sending us to a local doctor (Lonnie Moskow) who may be just as great. We're praying that if he isn't confident in his ability to do the surgeries on her hands that he'll be able to tell us so that we can find a doctor who can. We are confident that God has the perfect surgeon picked out for her, regardless.
Be praying as we meet with Dr. Moskow on Wednesday of this week.

Gotta run...I'll post more pictures and video as well as a surgery update after our next appointment.

Thanks for being faithful and steadfast in praying and checking on Jordan Joy's progress.

Love, Jen

Here's our first video clip of Jordan. It's nothing too exciting - we're just trying to figure this out.

If you scroll down to the next post on the page I put some new pictures up. The top one is of the kids watching morning cartoons with Mommy in bed...this beats working in an office any day! :)

Noah is still slowly warming up to Jordan. He is really more interested in cars, trucks, playing outside - anything but that baby that just sits around and doesn't do much. Funny how that will change once she can play with him. I'm REALLY looking forward to that day. By the way...Noah turns 2 on April 23rd. Such a big boy!!! He talks non-stop and is becoming an even sweeter, more loving little person every day. What a blessing he is to our entire family!

As for Jordan:
Therapy - We've been going to physical and occupational therapy for almost one month now twice a week for an hour each time. She's still behind in her gross motor milestones but the therapists are pretty positive it's due to all of her setbacks physically and that there is nothing to worry about cognitively (she is just as social and responsive as any other baby her age). We're really holding our breath waiting for her to roll the first time and then to sit by herself (she's really close to doing both).

Reflux - Her reflux is slowly getting better. It's still a little uncomfortable for her to be on her back or sitting up (hence the delay in rolling and sitting) but she is spitting up WAY less. Her medicine is working and our goal is to have her completely off the medicine with normal spitting up by 8 months (just under two months away). We are due to go in next week to see the specialist and our occupational therapist will go with me so we can start to gear up for spoon feeding (tremendous obstacle with her palate missing).

Orthopedics - We have one more final post-op, post- cast follow up in a couple weeks. We're going to ask the doctor if she can have a brace just for sleeping. Her natural resting position for the foot that was tied to her leg is back up in that position. We're constantly stretching her foot down but it tends to pop back up. He doesn't want her to use the brace because he wants her getting used to the feeling of pressure on her foot when learning to bear weight. Pray that he will give us a brace for nights as our therapist is recommending.
PRAYER - Please pray that I find the special hand surgeon that God has for Jordan. Our insurance will provide one second opinion so we need to find a "Pediatric Hand Surgeon that specializes in congenital deformities and has experience with Amniotic Band Syndrom or Streeter's Dysplasia." We are willing to fly there if needed but really want to find the BEST doctor. The therapist is concerned about Jordan's pincer grasp with her thumb not working so well and being so short. It's SO important that we do this right. I don't feel like I have time to dedicate to this search or even that I know where to start looking. Please pray.


Craniofacial - Jordan's plastic surgeon (who we LOVE) said that her palate is so wide that he can't do her surgery to close it until she's at least one year old. :( This is hard to hear because it's such a juggle with her speech and language. We want to wait so that it'll be a successful closure but we also don't want her speech to be too delayed. Another possible setback with this is that our surgeon has gone out on his own and is not accepting our insurance. We're working on pleading with him to take Jordan at our HMO cost. PLEASE PRAY that he will and that we will just be a blessing to him and to his office staff throughout. We really, really like him and feel so comfortable and confident with him. It would be very difficult for us to go to another doctor at this point - in the midst of the process. We trust that God's plan is for the best and that He will use us where He places us but it's still tough.

Hearing/Ears - PRAISE THE LORD!!!!! Jordan had her follow up hearing test after getting her ear tubes. The first test before the surgery showed a significant hearing loss. This test came back "within normal limits!" Hallelujah!!! Only my fellow deaf educators can truly sympathize with my fear on this one. I really felt that I could handle any news other than a permanent hearing loss. I know first hand the struggles that come with that. Also her tubes are working well. She is in the midst of her 5th ear infection in 6 months but thankfully the green nastiness just drains right out now which means we can catch them early and the doc can have the green tested and treat specifically the bacteria that is in there.

General Baby Stuff - We have a new pediatrician for both kids now. We were REALLY sad to say goodbye to our old doctors but our case was difficult for them to handle with the surplus of referrals we had. They were wonderful and it was a litte emotional leaving them but I have great respect for our new doctor and he is very thorough w/ Jordan. In fact, on our first visit he sat down, took a deep breath and said, "Well, it looks like we have a lot to talk about." I almost cried. Finally someone who really wants to know everything. He took so much time with us and has every time we've seen him.

As for our spirits...we're just in the long stretch at this point. No surgeries scheduled for at least 5-6 months so we're looking forward to a "normal" summer of beach days, trips to visit family and even our first family vacation with Gma, PopPop and Uncle Scotty (as Noah says) to North Carolina's Outer Banks. Shan plans to get Noah on a surfboard and I plan to relax, read a book and take a few naps. I am still, thankfully, at the place where I'm thankful every day that Jordan has her special needs because I've now got such assurance of my faith and my relationship with God has been cemented through my reliance on Him for so much. I wouldn't take any of it back. Having Jordan has brought countless people into my life that I've been able to connect with and share the good news of Christ to. It's been SUCH a reminder, as our pastor said Easter Sunday, that these bodies are temporary and they are failing us. It is our spirit that truly matters and what happens when these bodies are long gone. As Pastor Mike said to his daughter when she said she couldn't wait to get to Heaven so she didn't have to wear her leg braces he told her to "hang in there a little longer" and soon enough she will have a new body (he continues to pray for that for her). I think about Jordan and the social problems she will likely face, the pain of surgeries and physical therapy and the knowledge that she is "flawed" by the world's standard and it makes me pray even more diligently for her spirit, that she will indeed have a new perfect body someday in Heaven. Having had two kids and seeing the years add up, I am also anticipating this new body that the bible talks about. :)

Thank you all so much for checking and for continuing to pray for us. I will post periodic pictures and updates throughout the summer and then we'll gear up early September sometime for her next round.

If you'd like to go back through the postings and photos you can click on "Archives" on the right hand side of the page to go back through them.

Scroll down for more photos recently posted and click on the pictures individually to see them enlarged.

Jen

Hello all!
We've had another crazy week with at least one doctor's appt each day so I'm a little late getting this posted. As yet another example of God's provision, I was looking around my messy house wondering what my family was going to eat for dinner and how I would ever get around to making it. Just then Debbie from the prayer team at church called and said she was bringing dinner to us in an hour. Thanks to her I have a quick minute to update you all through the blog. :)
We went in for Jordan's cast change on Tuesday and the doctor not only told us we no longer need to recast it but he also took x-rays and told us all the bones are perfectly fine and match with her other leg. Praise God!!
Wednesday we met with the new pediatrician and we love him. We will miss our old doctor so much but are hopeful this one will be as good of a fit. He spent an hour going over Jordan's history and even started our visit with, "Wow, we sure do have a lot to talk about...why don't you start at the beginning." How refreshing!!!
Today we met her Gastroenterologist who says she is doing great and can even get down to only one medication for her reflux with us using the other as needed. She hopes Jordan will outgrow this by the time she is eight months old.
Noah is recovering from his bronchiolitis and no longer needs the breathing treatment (he has had this for two weeks) and the doctor says Jordan probably had the same thing (a gift from her big brother) but thankfully she didn't need the breathing treatment except for an as needed treatment. They are both on antibiotics and are pretty much back to normal.
Last week Jordan woke up with greenish yellow slime coming out of her ears and all over the blanket. Thankfully she has the tubes so it can drain out, we can know she has an infection and then get antibiotics. Her ear infections have also cleared up by today.
What a great week it's been. :)
I have more to say and to share but not much time right now so I will write more later.

The middle picture is of Jordan's first time wearing a sleeper with both her feet actually in the footies (it was always attached to her leg and then with the cast she couldn't wear sleepers). The next picture is of Jordan and two of her cousins who came to play this weekend. And I couldn't leave out a picture of sweet Noah at the Whale Parade in Dana Point this weekend.

Thanks, as always for your love and support!
Jen, Shan, Noah and Jordan Gray

Happy Valentine's Day to you all! We had a great day with Jordan finally eating better and much happier. Noah and Jordan's friends, Ivy and Gabe came over to play and make (actually just eat) Valentine cookies.

Jordan is much happier lately and is doing much better. It's still a challenge to get her to take all of her bottles and it's a difficult balance between giving her enough rice cereal in her milk to help with the reflux but not so much that she can't make room for more - if you know what I mean. :)

One other problem is that her skin keeps coming off with the steri-strips we have to use to keep the nose stints in. They get clogged with her spit up so she can't breathe and we have to change them but every time we change them the skin on her cheeks gets more raw.

Today Jordan got her second cast change and the doctor opted for a short cast. She still has about four more weeks with the cast on. He said that there will be no problem with her walking! Praise the Lord! He also said her z-plasty, to smooth out the band in her leg, is healing well. He also said that the bones are not fused together on her hand. He thinks he will just need to cut the webbing and do some plastic work on them and we'll have more to work with than we first thought. He's unsure how long they'll be after the seperation but it does look better than we first thought.

Here's a summary for prayers and praises...

+ Praise that the doctor is confident that she'll walk without problem with the help of physical therapy.

+Praise that we are two weeks down on these cast changes and that it's now a short cast, meaning we can put regular pants on her (not so obvious, less people staring).

+Praise that the z-plasties (spelling?) are healing well and are pretty smooth. We were hoping the back of the leg would be smoother but we are still very pleased.

+Praise that her reflux is much more manageable with the new medicine and that we are thinking we can now avoid an upper G.I. (barium swallow with an x-ray).

- Pray that her reflux will get even more under control and that sooner rather than later, she won't need medicine for it.

- Pray that she will begin napping on a schedule during the day. At this point she only cat-naps and mostly wants to be held.

- Pray that her skin will hold up under the strips that hold her nose stints in and that they won't get so clogged with spit up that I need to change them in order to get her to eat. They've become such a problem but we are supposed to keep them in for six months.

*********Thanks for checking in again!

I just wanted to encourage everyone in the fact that things are looking up for the Gray Family. Jordan is on a new medication that coats her throat so that the damage to it doesn't cause her pain. Literally, an hour after her first dose she drank an entire 6 oz bottle without even a whimper.

Praise the Lord for His provision!

We're working on insuarance approval for a longer term acid blocker for her to take so the throat doesn't get irritated so badly again but it sounds like it should go through. She is so much less fussy and actually smiles again. Noah is adjusting well this week too. He even kissed her yesterday and has been warming up to me again after beign jealous of my time with Jordan.

I'm glad to say that we won't have too many more postings for the blog for a while since all is going so well. I can't thank you all enough for your prayers and for your encouragment and offers of assistance. When we look back on this time in our lives you will all be a part of this challenging but amazing time in our lives when we were able to see God's hand at work in so many ways.

Thanks!!!
Shannon, Jen, Noah, Jordan Joy (and Peekay and Junior too!)

On the Road to Recovery!!

Jordan had another long day today but now officially has her new lip.

She had her stitches taken out this morning in her lip and nose and looks beautiful. She'll wear her nose stints (nose shapers with the tape holding them in) for six months and will wear the "no-nos" on her arms for two more weeks to keep her hands away from her face.

She also had her orthopedic check up where Dr. Rosenfeld removed her cast to check the stitches on her leg where they released the band and to re-set her foot. The front of the leg looks fantastic but I'm a little concerned about the back. It's still quite indented. Dr. Rosenfeld thinks it's just the swelling. Either way, it's MUCH better. Her foot can't just be pulled all the way down so they are doing it in stages. Her cast is a little smaller this week but she still isn't ready for a short cast so it still goes up to her diaper. He also removed the bandages on her hand where he released the webbing of two fingers. It looks really good and she's already moving her fingers a bit more. We're cleared to start occupational and physical therapy two times a week for her in Dana Point (yes, that's on top of the one appt a week she has to see the doctor). Please pray for her therapy to start soon, for Noah to be taken care of during these appts and for her to progress rapidly with the use of her hands.

We, of course, had another set back with insurance hassles and getting in to see a G.I. specialist for her reflux. Her pediatrician told us to go to the emergency room tonight to get fluids in her but she's not showing signs of severe dehydration so we're waiting and keeping an eye on her. He tried to get her admitted but there were no beds so we'd have to spend the night in the ER if we went. She is up from seven ounces in a day to 11 so far today. That's more than she's had in one day since before the surgery. Pray for us to get in asap to the specialist and for them to find the problem and fix it.

Thanks so much for all the phone calls and meals. They've been SO appreciated. I don't know what we'll do once my mom and step-dad go home on Sunday but you can all be sure we'll be calling on your many offers of help. Noah has had a really tough time adjusting which makes us feel guilty when we're tending to Jordan's many needs right now. We're trying to remember that he is learning the best lesson ever - to consider others above himself. Pray for our adjustment as a family and for Noah's patience and love for Jordan.

So far Jordan is healing pretty well physically but is having a few setbacks.
--She isn't eating well. For a few weeks we've had a hard time getting her to drink. We've blamed it on several different things (ear infection, reflux, constipation...) but after treating all of them it's even worse now. The doctor was figuring out today how much weight she has gained in the last 48 days and it added up to only 3 oz (technically she gained more but lost it)!! The pediatrician is really concerned and wants us to see a GI doctor as soon as the referral goes through. We're supposed to watch for signs of dehydration and take her to the ER at CHOC if she doesn't start eating more by the time we can get to the specialist. The current theory is that she has developed an aversion to drinking due to her painful reflux. It's so sad - she's starving but won't eat. When we can sneak a little milk in she ends up spitting it up and screaming the whole time. :(
--We can't keep her nasal stints in and can't bear to force them back in while she cries.
--Her face is starting to become really irritated by the tape holding the stints in her nose.

One real blessing we have through this is seeing Jordan's new smile. She was beautiful before but now we just keep staring at her and loving her new look! God has also been so good by reminding me daily of the blessings we have.

I'll post a picture of that beautiful new smile tomorrow. :)

Jen

This is my favorite shot of her with her lamb and her prayer quilt from church.
So sweet!!!

First Surgery Down!
Oh my.
This was rougher on her than we expected and was therefore much harder on us to watch. In the hospital the only part of her that wasn't affected was her trunk. Her left leg had an I.V., her right leg had the toes released from the leg and eight Z-Plasties around her calf to loosen the constriction ring, her right hand had an I.V., her left hand had webbing released, her lip was repaired and she had a nose job. She was in A LOT of pain and was prescribed Morphine every four hours. The only problem with that is that Morphine is a 1 1/2 hour acting drug. Every hour and a half she would start thrashing around and screaming but the nurses couldn't give her anything more than Tylenol with Codeine. SOOO sad!! Finally they called the doctor at 5:00 this morning and they increased the Morphine. By this afternoon she was off the Morphine, only on Tylenol with Codeine and off the oxygen. We were able to get a little milk in her later in afternoon/early evening so they let us bring her home. Unfortunately right when we get her home we realize her nasal stints (these plastic tubes keeping her new nostrils open) are falling out. We panicked and tried to shove them back up into her nose with no success. We're not sure what to do now but are thinking we'll have to take them out until her follow-up with the doctor who can put them back and then show us how to do it.
We are very tired (I'm completely drained!!) and are looking forward to a night of waking up so I'll write more about the experience later. I just wanted to make sure I got pictures out soon and a quick update.
Thank you all for your prayers and your messages of concern!
Jen