Riley's Journey With Craniosynostosis

Settling in Back Home

2008-11-06T15:22:00.000-08:00

I've met some awesome people through Riley's journey in the past year and a half. It's not often that I get to meet these people face to face! Well, today, that changed! Dawn is the mom of a sweet boy named Cole. Dawn emailed me months ago after reading my blog to let me know her son had the same syndrome Riley does (Pfeiffer) and we realized that she lived only a few miles from us!! We moved to NC, and were never able to connect, but when Dawn read we were moving back, she contacted me about arranging to meet, and today we made it happen!! We met at a sweet new park in Rancho San Diego. Dawn also arranged for Alicia to meet us for the play date. Alicia's son Dominick was featured in a news article a couple months ago. Dominick has Crouzons, which is a syndrome closely related to Pfeiffer. It was so awesome to be able to connect with other moms who have been through the same journey I have with Riley! We talked about our babies the whole time and they wore themselves out playing in the water and all over the playground! I'm looking forward to connecting with Dawn and Alicia again soon!

First Round in NC

2008-09-03T08:39:00.000-07:00

It feels good to finally be back up to speed with Riley and his continued progress. Although we are very happy with the audiology department here at UNC, it has definitely been a lot of work, and a long process just trying to nail down all his records and previous testing from San Diego. We've pretty much just had to start from scratch as far as diagnosing Riley's hearing issues, which in my opinion is a good thing. I feel better about starting all over again, rather than relying on written documents from almost a year ago!

Today, Riley got a set of non-functioning tubes removed from his ears, another set replaced in his ears, and he also received another ABR (Auditory Brainstem Response) Test.

The surgery and testing were successful! The entire procedure took about 90min. The results weren't what we expected! But they were better, and so much more informative than what we knew before today.

Riley's right ear tested at normal levels for every frequency!! This is DEFINITELY an answered prayer! He has NEVER tested at normal levels in either ear. This test is the most extensive and accurate of any hearing test he's ever received. He had the same test back in San Diego, and that test revealed a mild loss in the right ear and significant loss in the left ear. For whatever reason that has changed, because today, that SAME TEST revealed perfect hearing in Riley's right ear! YAY! Does God say "See, I got your back!"? because I swear that's what I heard Him say when the doctor told us those results this morning!

We also got some new, and helpful news about Riley's left ear. They were much different than the right ear, which we knew would be the case! He still showed a significant loss in his left ear. They were able to diagnose him with Audio Neuropathy (nerve is not working properly) He will receive an MRI in the next couple of weeks to do more extensive research on why this ear is responding so poorly. All we know so far is it has to do with the nerve in his inner ear. So the MRI will hopefully reveal if the nerve is damaged or if it's even intact. The audiologist also informed us that hearing aids would not be productive and would only hinder Riley more. This is because hearing aids only AMPLIFY sound, and since the damaged nerve causes him only to hear a very muffled "white noise" sound, hearing aids would only make that "muffled white noise" sound LOUDER. Since Riley does have one "good" ear, we'll just start adjusting his therapy (behavioral and speech) to train him to compensate and maximize the use of that ear! Essentially just playing to his strengths! It made perfect sense to me, which is good since his testing has been so inconclusive until now! Our next step is to find out even more info after he receives an MRI. I'm excited to give this info to "Mrs. Margaret" (Riley's speech therapist), so she can even more strategically work with Riley on his speech! I really can't explain how thankful I am for her role in Riley's life right now!

Thanks everyone, for praying! I firmly believe the good news we received was a direct result of someone praying for complete healing in that ear today. Thanks to whoever said that prayer!!

Here are a few pictures we were able to take this morning before Riley's surgery!

Riley and Daddy at the hospital before checking in!

Watching cartoons and waiting for the anesthesiologist.

Getting sleepy and VERY tipsy after a dose of pre anesthesia sedative.

And off to the abyss! Or at least that's how it feels every time I hand him over for surgery!

He never once cried! The doctors were surprised (they usually are) when Riley woke up completely calm and happy. We got him home and gave him some lunch. He was happy to see his brother, but still a little tipsy from the anesthesia.

Today was an encouraging day for us! It's so good to see results of God's hand. It's also feels good to be done with Riley's first round of testing in NC.

Back in the Saddle!

2008-08-25T06:54:00.000-07:00

That's what I felt like after I got home from Riley's most recent series of appointments (all in one day). I've made new friends in Riley's new audiologist and head and neck surgeon! We'll be seeing them often in the next few weeks and months!

Last week, Riley was referred in another hearing screening, which means he didn't pass. In either ear. He has tubes in right now, but neither of them are functioning, so we have an appointment for the doctor to remove the tubes he has in now, and then in the same day, they're going to replace them with new tubes. Riley also needs another ABR test. He had one right before we left San Diego, but the records aren't very conclusive, so the department here at UNC wants to redo the test. He'll be sedated, and they'll do an hour long test to determine if his hearing loss is due to nerve damage (which I know it is, since they figured that out in SD), and how MUCH hearing loss he has. At that point, they'll most likely fit him with hearing aids right away. The doctors here do not like to wait until these kids are in school to give them hearing aids. They're much more aggressive about it. So we'll see what happens.

We are also all set up with the craniofacial team here in Raleigh. It's time for his year check up, when we'll find out if and when his next cranio surgery will take place. I LOVED my craniofacial team in Cali. I've done a lot of research, and DR. Kawamoto and his team are really the best of the best, so if he does have another surgery we'll most likely want to do it there in LA, where his initial surgery was. But I don't have to even start thinking about it until his next check up appointment.

Riley continues in another day of speech therapy today! He is making great strides in his speech , and has started using three word sentences which is a HUGE milestone for him, in a really short amount of time!! My favorite new phrase of Riley's is "I lub you mom"! He says it randomly all the time, and I know he knows what he's saying! He just melts my heart!!

Please pray for his upcoming appointments! We're trusting God that He's healing Riley everyday, and building a great life and future for my sweet boy!!

Praying for Max - Surgery: 8/4/08 UPDATE 3!

2008-07-31T13:13:00.000-07:00

I want to make a habit of using Riley's blog to highlight the stories of families who have contacted me about their children and upcoming craniosynostosis surgeries. I am so excited about this opportunity, and the encouragement that it might bring to the many families who have been encouraged by Riley's story!

This week I got an email from "Myra", from Miami FL, who shared a really sweet story about her son, Isaac Maxim "Max".

Myra and her husband adopted Max from Russia in December of 2007. After a number of doctor's visits, Max was diagnosed with craniosynostosis. He will have surgery on Monday, August 4th, 2008 to separate two sutures (Sagittal and Metopic) that are currently fused together. Max is 18 months old.

Please join me in praying for the Sierra family and specifically for Max.

Here are a few ways we can start praying. I will update as I receive updates from the family!

1. Pray for sweet Max's body today and this weekend. That he'd be healthy and strong leading up to his surgery date, this coming Monday, August 4th.

2. Pray for guidance and incredible wisdom for the doctors and hospital staff.

3. Pray for the Sierra family. That God would overwhelm them with peace and an outpouring of love and support from their extended family, and from others around the world who are praying!

UPDATE #1!
Myra's mother in law left a message on my voicemail today to let me know Max's surgery is over and was successful! They are in the waiting room right now, waiting to be reunited with Max! Thanks Sierra family, for the updates, and thanks to Riley's friends for praying! Continue to do so, throughout Max's recovery process in the next few days! Keep checking this post for updates!

UPDATE #3
I was able to speak to Esther, Max's grandma, today! My heart is filled with joy every single time I hear a report from this family, and today was no different! Max is doing wonderful! His drainage tube was removed today, as well as the wrap around his head. He his very much aware, awake and even watching cartoons from his hospital bed! Swelling has been minimal, and he is slowly being weened off of his morphine! WOW! God has answered some BIG time prayers already! Please keep praying for Max's speedy recovery! Keep checking this post for updates!

UPDATE #4
Thanks so much for your prayers and support! Max is out of the hospital, and his surgery was a complete success! He recovered incredibly quickly and is ding great at home getting back into the swing of things!! Here are a couple before and after pics.

MAX - Before Surgery:

MAX- After Surgery:

Feel free to leave a comment with a note of encouragement to this awesome family!

My Little Gabber

2008-07-16T11:22:00.000-07:00

This week, Riley's vocabulary expanded by at LEAST 15 words! It seems like he knew these words all along, and is just now able to literally voice them. He copies just about every word Cameron says, and he's starting to put words to many of his actions! Mrs. Margaret, Riley's speech therapist, has really been able to connect with Riley on a deep level! She's catalyzed something in my boy that has made him so excited about learning and using his words. He loves her dearly. He's full of hugs and kisses for her during the entire session. Riley ran and gave her a HUGE hug, even before she even walked in the door today. She didn't even have time to put her stuff down to hug him back! At first I thought he was just trying to use his charm to get what he wanted without having to speak. But I'm realizing, that's not the case. At least it's not now. Riley genuinely loves his time with "teacher", and he knows that she loves her time with him!

Riley ALSO started using the word "NO" this week. Although it has been a little irritating to hear, I am so encouraged that he KNOWS how to say it, when to say it, and what it means. That's one word I'll never have to work on him with! He's got it down!!

This week, I'm going to work with Riley on using words to distinguish between 2 choices. My hopes are that by next week, I'll be able to ask him if he wants "juice or water", and he'll be able to speak his choice instead of only pointing to it! He's already doing a great job.

This week was a great week. It is sooo awesome to be able to watch Riley's progress. I'm so proud of my sweet boy!

Grand Design

2008-07-10T19:20:00.001-07:00

It's Official! I know I'm WAY more excited about this than I should be! So...sorry for the hype. But I cannot tell you how stoked I am about Riley's story being featured on the Jorge Posada Foundation Website! I got an email a couple days ago, from the foundations creative director. He sent me a link to a preview site where I could see where Riley would be featured before they launched their new site. The site went live today! I'm just amped up at the opportunity I have to speak hope into families struggling through the same situations we've gone through with our sweet boy in the past year and a half.

As I was thinking about this post today, I was listening in the car to Jill Phillip's song "Grand Design". The lyrics humbled me in a powerful way. They speak into a time when I was scared, with endless questions. They also speak into this moment today. When, even though Riley has a long road ahead, today, I'm experiencing a piece of God's grand design for my Riley James and his journey with craniosynostosis. That his story might be hope. Even maybe to just one person.

Here are the lyrics:

"I knew it all along that this day was coming
Even though I knew it doesn’t hurt any less
But somehow the suffering draws me to You
I could start running in anger
But then what’s the point of a Savior
I feel the pain but it still doesn’t change who You are
Nothing I feel is outside of the reach of Your arms
My whole world could crumble but all of the pieces remain
In Your hands that are waiting to put them together again
Just like I know You will in Your own time, in Your own wisdom
One day I’ll look back and see the grand design
Maybe it will make sense then, these questions I have
But with it all here front and center
Sometimes it’s hard to remember
I could start running in anger
But then what’s the point of a Savior".

Download the song, or at least listen to the snippet here.

Riley is featured here on the Jorge Posada Foundation website.

To visit the foundation's main page, visit:
www.jorgeposada.com/foundation
Riley's Journey is found under the "programs" link.

Raising Awareness

2008-07-04T05:26:00.000-07:00

I recently watched an episode of "Live with Regis and Kelly", where Kelly mentioned she had hosted and event for the Jorge Posada Foundation. The Jorge Posada Foundation is a non-profit organization established by the New York Yankees’ All-Star Catcher, Jorge Posada, and his wife, Laura. Their son, Jorge Jr., was diagnosed with Craniosynostosis when he was just ten days old and had to undergo five major surgeries to correct the condition.

I was thrilled to hear someone talk about Craniosynostosis on one of the nations top morning shows. I immediately searched for and found the Jorge Posada Foundation website. After searching through it, I emailed them to tell them about Riley and how encouraged I was to know that Jorge Posada and his family are raising awareness about Craniosynostosis. I also told them about Riley's blog in hopes they might be able to use it, or refer it to people who are struggling through the sometimes scary moments of the treatment and process of the condition.

I got an immediate auto response reply from the foundation saying they were overwhelmed with emails, and that it might take a while for anyone to respond. I also remembered that I never gave them the actual web address of Riley's blog. "Oh well"! I figured if they really wanted the web address, they'd email me back, and I was just glad they were raising awareness, even without Riley's story.

This morning, Steve was checking my blog and noticed a comment from someone named Mark. It read:

"Hi Lauren, I'm writing as a representative for the Jorge Posada Foundation. We received a request to include Riley's blog on our new web site. But would only do so with your permission. If you have any questions please feel free to contact us at foundation@jorgeposada.com. We look forward to sharing Riley's story. Kind Regards - Mike"

I was stoked to hear that they found it on their own, or by someone else's request. I emailed back to APPROVE usage of Riley's blog on their website. I'm hoping that Riley's story linked from Jorge Posada's website will strengthen and give hope to people who have had the exact same thoughts and concerns I've had since the day of Riley's diagnosis.

Early Start Program Results

2008-06-03T13:33:00.000-07:00

The past 5 months went by incredibly fast! I located the Early Intervention program here in Raleigh, which is the equivalent to Early Start, which was who Riley was seeing in San Diego.

Four really nice ladies came for Riley's initial evaluation today. They each introduced themselves as their different roles. One lady was an occupational therapist, one was a speech therapist, one was a social worker, and another was an audiologist.

Going into the appointment, before the evaluation started, I knew that Riley probably would score the lowest in the areas of speech and vocabulary, identifying objects and sorting items. I was somewhat correct about those things, but there were also a few other weaknesses I wasn't aware of until today.

I know Riley has a strong personality, but wow...I was amazed at how poorly he listened to instructions!! Most of the time he was just being a defiant (almost) 2 year old, but at other times he just didn't understand directions.

Here's an example:
One of the ladies asked Riley to bring a toy car to me. they asked over and over again and he wouldn't bring it to me. After we KNEW Riley wasn't going to give me the car, the lady took one wheel off of the car to that it wouldn't roll anymore. He turned to each lady to ask them to help him put the wheel back on. Instead of helping him, they told him to "give the car to mommy". He immediately came over and brought me the car. They told me that they knew he understood the direction to give me the car, but that he didn't want to until it was broken and he needed me to fix it.

Another time, they asked Riley to put a ball into a cup. They told me NOT to point at the cup. They wanted to see if he knew what the direction was without me physically showing him. He struggled in just about everyone of these exercises. I wanted so badly to point and help him out, which made me realize that I do that a lot. I need to start instructing him to do things without any pointing or physical direction.

After about 2 and a half hours of evaluation, a hearing screening and a vision screening, here are the results:

An average score for Riley's age (22 months) is anywhere between 85-115
GROSS MOTOR SKILLS: 99 (average)
Gross Motor Skills are major movement functions such as walking, maintaining balance, coordination, jumping and reaching.

NON VERBAL SKILLS: 84 (slightly below average)
Non Verbal Skills are Riley's ability to sort and match different objects

FINE MOTOR SKILLS: 112 (average)
Picking up and holding objects.

RECEPTIVE: 70 (below average) Equal to the receptive skills of a 15month old
This score was based on the following receptive skills tested - Recognizes body parts and clothing articles in large pictures. Understands simple yes/no questions. Understands differences in personal pronouns (me, you). Follows a series of two - three simple relations commands with the same object. Appears to listen to meaning of language, not merely words. Recognizes many common objects and pictures as they are named.

EXPRESSIVE: 79 (below average) Equal to the receptive skills of a 16month old
This score was based on the following receptive skills tested - Imitates animal sounds and other environmental sounds in play. Refers to self by name. Uses "no" frequently. Uses "my" to declare ownership. Begins combining words to form two-word phrases. Asks questions by raising pitch of voice at end of word or phrase.

OVERALL COGNITIVE SCORE: 82 (Mildly Delayed)

Based on his score, his syndrome and past health issues, Riley qualifies for the early intervention program here in Raleigh. This means Riley will have weekly visits from different therapists who will work on Riley's weaker skills. He starts speech therapy next week.

Riley didn't pass his hearing screening AGAIN, so they referred him to an audiologist who will help determine what steps we need to take with that.

As far as they could tell, Riley's vision seems fine, but a specialist will look at the report this week and let me know official results.

So... what all this means is...We're back into the swing of things! I'm really glad Riley is going to start getting the therapy he needs, and I'm even more glad to learn some new ways that I can help in his progress!

Riley Update May 2, 2008

2008-05-02T14:27:00.000-07:00

After a few months of transition and settling in, Riley is adjusting well as are the rest of our family here. I've connected with doctors and specialists here who are going to kind of take up where we left off in CA. Riley will be seen again by the First Start program, so that we can keep working on Riley's language skills. Riley is slowly but surely progressing in this area. He is saying new words every day, but he doesn't use them consistently. We're really trying to reinforce him to use the words he knows more often.

A few other things we're excited about are:

1. Riley has had ZERO ear infections since he received tubes in January. This really seemed to be a problem solver in that area. It has also greatly helped his hearing.

2. Riley's skull is shaping very nicely. A few months ago, we were concerned about a few REALLY large bumps in Riley's head. They have since then seemed to straighten themselves out, and I haven't been able to find any bumps lately. We were told that as his skull is still shaping around his brain we will notice changes in his head shape, so I won't be surprised if we find different or more bumps in his skull as he grows.

All in all Riley's future is looking bright. The boy LOVES life, and we LOVE it with him here!

1 YEAR ANNIVERSARY

2008-01-02T09:28:00.000-08:00

Today marks 1 year from Riley's cranial vault repair surgery! To say that I'm pleased with Riley's progress would be a HUGE understatement! The boy is smart, handsome and loves people and life more than anyone I know!

Thank you Lord, for Riley and the huge strides in progress he's making. Please keep him close to you in these coming months as he experiences an emotional transition as we move across the country.

Mommy Loves You Riley James!

Riley's Second Surgery 12.27.07

2007-12-27T23:58:00.000-08:00

It was just another day in scrubs for my sweet Riley James. Today, Riley got tubes in his ears. We've known for a while that he's had a blockage in his eustation tube, and after a couple of canceled appointments, we were finally able to get the procedure done today.

We checked Riley in at 7:15AM and after a few tests and waiting around, the anesthesiologist took my boy away at about 10AM. That 2 hour and 45 minutes of waiting is incredibly painful. Not only because my one year old baby is waiting without having anything to eat or drink all night, but more because I spent that entire time anticipating the moment he'd be taken away from me and taken to anesthesiology. It would have been nice if we could have just ARRIVED, and dropped him off. That way I wouldn't have had time to think about all of the terrible things that could go wrong!!

Everything went fine. Riley was a little angry when he saw us after he woke up. I could totally sense his feeling of betrayal. Nothing a million kisses and some snuggling couldn't cure! After he calmed down, we took him home. He's been nauseous all day and I can tell that he's in some pain. But I think he'll be back to normal by tomorrow or the end of the weekend.

Update 11.15.07

2007-11-15T13:48:00.000-08:00

As you may have read on my family blog, the other cause, we've been in the process of relocating our family to Raleigh, North Carolina. We'll be completely moved by the first week of January 2008. In the midst of a big move, Riley is really growing into his own little personality. He's definitely a loverboy...He loves kisses. Especially from Emmie Kate!

(cute pictures from my terrible camera phone - Sorry.)

Most recently, The La Mesa/Spring Valley School District has provided us with a teacher who personally comes to our home each week to work with Riley. We've been really blessed by a great teacher named, Karen. She has a REALLY cool story about how she started teaching deaf and hearing impaired students. I really couldn't have asked for a better person to help in Riley's situation. Karen has really inspired me to work with Riley in new and different ways to improve his language and motor skills. With just three weeks of her help, Riley is already able to point to his nose, objects in books, and he's getting much better at stacking blocks! I am so encouraged by Riley's continued progress, and even though we have a LONG way to go, I'm so anxious and excited to see what God is going to do in this little boy's life!!!

UPDATE 9.18.07

2007-09-18T22:10:00.000-07:00

Today was nothing less than a day of complete SUCCESS! Great drive, great company for the ride (thanks Cat!), and the best part...a PERFECT prognosis for Riley!

I totally prepared myself for the worst today, but remained confident that whatever the outcome, God completely had his hand on Riley's life and future.

We waited in the doctor's office for about 7 minutes before the doctor came in. I thought we were only going to see one of the doctors, but to my surprise, the ENTIRE craniofacial team that performed Riley's surgery was there! They ALL remembered him! 8 doctors entered the room and before I was even greeted, they all looked at Riley and back at each other with astounding WOW'S! Dr. Kawamoto who is generally emotion-less, had a big smile across his face as he assessed Riley's head. I could tell he was pleased. They said a quick hello to me, and then proceeded (just like our first visit) to talk to each other about Riley's various abnormalities in his hands and toes, trying to figure out which syndrome he has. I did my best to translate medical language and sneak in questions as they talked to each other. They are VERY pleased with Riley's progress and the shape of his head! Here's what I was able to gather during our visit!

1. NO MORE SURGERIES for Riley's skull!! This is HUGE! They told us Riley would possibly need some facial reconstruction when he's 6 or 7 years old depending on how his face forms. That's usually standard procedure. But his skull is great and I was really happy to see the doctors as pleased as they were with Riley's progress!

2. Dr. Kawamoto DID diagnose Riley with Pfeiffer Syndrome. The syndrome is gnarly if you look it up on the internet, but thankfully Riley has a very mild case, and will most likely not have the developmental defects of Pfeiffers. This is GOOD NEWS!

3. We'll have another check up with the team in a year from now just to make sure Riley's still on track!

Thank you so much for praying. God answered in a BIG WAY today!

Followup Appointment

2007-09-16T16:26:00.000-07:00

If you haven't figured it out, I LOVE comparing pictures of Riley before and after his surgery! I'm so proud of my boy and thankful for all of the many wonderful doctors he's seen in this first year of his life.

On Tuesday, September 18th, I'm taking Riley to L.A. for his first follow up appointment since his surgery 9 months ago. The doctor should be able to tell us whether or not Riley will need more surgeries in the future. Steve and I are very pleased with Riley's progress both developmentally and physically.

Here's a list of what I'll be praying for on my drive to Los Angeles on Tuesday. Your prayers are very desired and appreciated!

1. Pray that Riley is healthy for his appointment.

2. Pray for a very thorough assessment of Riley's progress since surgery.

3. Pray that Riley wouldn't need anymore surgeries.

4. Pray that if he DOES need another surgery, it would be soon. Not when he's older.

Our God is so faithful!
Thank you for praying. I'll update after the appointment.

Sleep Tight Riley!

2007-09-04T12:51:00.000-07:00

Riley had a sedated BAER test done today (hearing test). The doctors haven't been able to get an accurate reading of his hearing since he was born, so in order to do this extensive test, Riley was sedated for 3 hours this morning. The roll away crib, the cords and red glowing toe brought back all too many anxious moments Steve and I faced when Riley had his surgery back in January. Needless to say, I definitely rested easier going into this appointment. I didn't really have to worry about things like Riley's skull being cut open! (lovely thought, I know). After about a tablespoon of some cough syrup type medicine and 10 minutes, Riley went from completely coherent to sleepy dream land. The nurses monitored his vitals while the audiologist tested his hearing. He slept all the way through the test and woke up as soon as we started taking all of the monitors and wires off of him. The test was a success, which is great! the results however revealed a whole new season of challenges for Riley.

I guess it's actually nothing new to him, considering he's been hearing the way he has since he was born! Riley's right ear is fine! Perfect in fact. So that's a BIG plus!! His left ear however did not do well at all. There is fluid in his left ear so that is one factor, but with this test, our doctor was able to read his hearing from the bone attached to the nerve in the ear, bypassing the ear canal and fluid. The doctor said in "my terms" (they don't use percentages) he has a 40% hearing loss in his left ear...that's WITHOUT the fluid in the way. Taking in consideration the fluid in his ear now increases that percentage substantially...to almost 100% loss.

The doctor did tell us that this hearing loss wouldn't directly interfere with his learning ability because he'll hear well enough out of his right ear. He'll have tubes put in his ears in the next couple of months to get rid of the fluid. They'll do another sedated test and then if the doctor's guess is right, he'll be fitted with a hearing aid for his left ear. The reason he'll need a hearing aid is because it's important that Riley can localize sound. Like when someone is talking to him at a distance he needs to know which way to look!

All in all today is was a success. All that kept entering my mind were those 5 days we spent in the hospital really scared to see our boy in pain 8 months ago. I even told the nurse, "I feel really confident that Riley's hearing or lack of it won't stop the AWESOME plans God has for this boy!" She agreed! Riley's been a little nauseous since we've been home, but that should go away in another hour or so! Please pray for Riley in whatever ways you feel led! Thank you!

2007-07-24T20:51:00.000-07:00

One year ago today, Riley James Faiai entered this world. As we welcomed him, he in turn welcomed us into a brand new life that would make our family stronger, more loving and more dependent on God than ever before. If learning how to keep my insanity while raising two boys (22 months apart) wasn't enough...Riley's health definitely kept us on our toes throughout the year he's been here! Riley has shown me perseverance, trust, and hope in depths that I've NEVER experienced before. He has grown me and stretched me in countless ways. As I try my hardest to keep him sweet and little, I am humbled at the fact that God created Riley to do something amazing with his life. I am so honored to be his mommy, and I truly believe he's going to do something for this world that is going to blow my mind.

On your 1st birthday, Riley James, I pray that in your years to come you'd live your life with passionate longing in everything you do.

I love you so much.
- Mommy

Oh Happy Day

2007-07-04T07:20:00.000-07:00

I thought I'd never see the day that Riley's eczema would go away, but folks... THE DAY HAS COME!! His face has completely cleared up and he hasn't scratched in about a MONTH...which just so happens to be how long we've been feeding him whole milk instead of formula. So, we've concluded that Riley must have been allergic to something in the formula.

Other than a KILLER ear infection that we've been treating, Riley is almost totally healthy! He'll be one year old on the 24th of THIS MONTH! He's crawling all over the place and can stand and walk around our furniture on his own. He still needs to go in for an extensive hearing test sometime this month, but we've definitely seen tremendous progress in his hearing since his surgery.

Riley and Cameron get along well, except for when Riley is playing with a toy that Cameron wants...which seems to be ALL THE TIME. They give each other kisses and hugs and Cameron prays for Riley every night before bed.

We frequent the beach and spend lots of time out doors doing things to keep cool during this CRAZY HOT summer. Here are some recent pictures of my Riley boy.

Comparison Pictures

2007-06-12T17:31:00.000-07:00

This month will mark the 6 Month anniversary of Riley's surgery date. Here are a couple comparison pictures of Riley before surgery and Riley today!

Before

After

The sovereignty of God is AMAZING!

5 MONTHS AFTER SURGERY

2007-06-07T11:52:00.000-07:00

Riley James will be ONE YEAR OLD in 2 months!! That is hard for me to believe. As rough as this year has been, time has absolutely FLOWN by! Riley is definitely starting to show us his personality. We are having so much fun trying to figure this boy out. He's very smart, and knows just what to do to make anyone's heart melt! Especially mine! He's definitely got some spunk and sass to his little personality and he's definitely keeping Steve and I on our toes. I recently quit one of my jobs so that I could be home with the boys more. Please pray for patience and wisdom for me and Steve as we seek God for guidance in this season in our lives! Thank you for keeping updated. For Faiai family updates beyond Riley, visit the other cause.

Fun With Brother!

2007-05-10T09:58:00.000-07:00

Riley was supposed to have an extensive hearing test done today, but is a little too congested for the anesthesia. So we had to reschedule. I had to post this picture my dad sent me of Riley and Cameron a couple days ago. Riley LOVES taking baths and splashing in his grandma's sink. Cameron loves to help give Riley a bath. Cameron's helping consists of dumping NUMEROUS cups full of water over his brother's head. Riley doesn't seem to mind!

Thanks for the picture, Dad!

5.1.07 Update

2007-05-01T08:23:00.000-07:00

This irritable, teething 10 month old has kept me pretty occupied lately and too busy to post, so sorry for the lack of updates! Riley's first tooth FINALLY broke through this morning! He's doing great. We're noticing new lumps and shapes on his head as some of the bolts dissolve allowing others to appear. His hair is growing nicely over his scar and we're starting to gain a little control of Riley's infantile eczema.

Riley had a hearing test 2 weeks ago, and we were able to find out that the surgery DID in fact help his hearing. Before the surgery, Riley's eardrum did not respond to sound. Now both eardrums are responding as normal. Unfortunately Riley didn't stay asleep long enough for the doctor to complete the hearing test, so he'll have to be admitted into the hospital next week and be sedated for a day so that they can perform an accurate testing. They test his hearing by the reaction of brain waves. So he can't be stimulated at all, that's why they have to sedate him.

Today we have a "pre-op" appointment, where the doctor will make sure he's in good enough health to undergo the hearing test procedure. He seems as healthy as he's ever been now, so that's a good thing!

Thanks for your continued prayers!

Here are some (not very good quality) pictures:

3.27.07 Update

2007-03-27T22:21:00.000-07:00

Riley James - 8 Months

Cameron Lee - 2 Years 5 Months

Aside from fighting a nasty battle against his infantile eczema, Riley is recovering from his surgery like a CHAMP! A few remaining stitches are almost ready to come out, and were are noticing definite changes in his head structure as plates and bolts begin to dissolve. Riley has a hearing test coming up sometime next month. Then we'll find out if the surgery corrected his hearing loss. A good friend of mine, Sarah Tolson, took these pictures of Riley and Cameron. I hope you don't mind me using them here, Sarah. I just couldn't resist. Hopefully everyone who reads this will visit your photography site!

Thanks everyone for checking in and, as always, for your prayers.

2.24.07 UPDATE

2007-02-24T07:18:00.000-08:00

Thanks to all of you who are consistently checking for updates. I apologize for the lack of posts in the past couple of months. This has been a busy, HARD season for us and we're doing our best to make each day a positive and productive one!

Riley's stitches have almost completely dissolved and a nice little scar is forming...actually it's a pretty BIG scar. We haven't had anymore checkups yet, but Riley seems to be healthy and strong, and is definitely making strides in growth everyday. He's a very happy boy and is starting to show one heck of a personality.

For those of you who were wondering...We recently got notice that we were declined for financial help from the government for Riley's disability. Because the surgery corrected most of his issue, he's not really considered disabled anymore. He doesn't have close to normal levels of hearing in his left ear, but he does in his right ear, so this makes him unqualified for government assistance.

He's a sweet, strong baby boy and LOVES his daddy and brother especially. Whenever Cameron looks at Riley, he cracks up laughing. It's really funny to watch. Cameron has been helping me change Riley's diapers and he also helps feed Riley his baby food. Cameron is a GREAT big brother.

Here are a couple pictures of Riley.
Thanks again, for checking in and for all of your prayers.

2/13/07 UPDATE

2007-02-13T17:06:00.002-08:00

Yes...yes...I know. "FINALLY A POST"!
It's been a little over a month since Riley's surgery, and he is doing GREAT! The stitches in his head are almost completely dissolved, and he's looking more and more "normal" everyday!! Here's a comparison picture! Thanks for your prayers and for checking in!

BEFORE

AFTER

1/20/07

2007-01-20T18:16:00.001-08:00

No words needed for this update!

Post Op Appointment Update.

2007-01-18T16:08:00.000-08:00

Well...this appointment definitely broke the record for the "shortest appointment" in L.A.
The appointment was 4 minutes long...and that's only because I asked a few questions!!

The doctor said Riley looks great!! He also said that the bump in his leg is just a clot of blood from the IV that will go away in a week or so.

I took a picture of Riley with his Neurosurgeon (brain surgeon), Dr. Cahan. He was part of a 4 man team of doctors who performed Riley's surgery. His job was to maneuver and take care of Riley's brain during the entire procedure. He definitely played the most important role, in my book!

Today 1/17/07

2007-01-18T07:31:00.000-08:00

We're leaving for our post op appointment in about 20 minutes. We have to be at the hospital in L.A. by 10:30. Riley's head looks great. Like I said in my previous post, some stitches have already dissolved! There is one thing that we're going to ask the doctor today. A couple days ago, we found lump in Riley's leg. It's about the size of a big marble. It's in the tissue in his leg. We're hoping this mass is just scar tissue left over from the I.V. he had in his leg for a week. Of course, I've been scouring the internet to find out what this could be, and I found something called "fibrosarcoma" which is a tumor commonly found on the lower legs or arms of infants. Please pray that's not the case, and that we come back from L.A. with nothing but GREAT news!!

Thanks for checkin' in!

Post Op Appointment in L.A.

2007-01-16T07:37:00.000-08:00

We're going to L.A. , on Thursday, for Riley's first Post Op appointment. Obviously we're praying for a good report. Riley's incision is healing nicely. Not sure whether the doctor will asses him neurologically or just physically. But, either way, you can be sure there'll be an update here on Thursday night. I'll post pictures then too.

Keep Praying! Thanks for checkin' in!

Comparison Pictures

2007-01-13T09:04:00.000-08:00

Aside from the HUGE incision line stretching from one ear to the other, Riley is back to the same healthy, strong, chipper boy that he was before the surgery!! I think he's actually a little more happy and animated than before!

Here's a picture comparison of Riley before and after his "Extreme Makeover- Head Edition"!

BEFORE / AFTER

Looking more handsome everyday!

2007-01-11T16:01:00.000-08:00

1/11/07 4:15PM

Prune Heaven

Riley Recovery Update 1.10.06

2007-01-10T10:47:00.000-08:00

Riley was in surgery at this exact time, 1 week ago today. He's doing well and sleeping a little better than the past few days. He still is struggling with a pretty bad gas problem, and still runs a fever every few hours. Other than that, he's a happy boy!! All smiles! Our good friend, Becky, came to visit this morning. She's the first one of my friends who has seen Riley since we've been home! It was nice to have a visitor! Thanks to everyone who is bringing us meals this week, and to my friend, Tara, who actually drove out to LA to visit us while we were in the midst of it all! Thanks T.

I don't know what we'd do without community. That's what I'm thanking God for today.
Here are some pictures of Riley on the 1 week anniversary of his surgery!

Post Op Update 1/8/07 8:52AM

2007-01-08T08:51:00.000-08:00

We got home last night, see post below, and I took a couple more pictures this morning, giving more of an idea about what Riley's incision looks like. He woke up with his daddy's cold this morning, and is more hungry than EVER before. So... today, we're going to spend the day getting "back into the groove" of life. This first picture is one I took right before we were discharged from the hospital last night. The rest are from this morning.

Post Op Update 1/7/07 9:10PM

2007-01-07T09:02:00.001-08:00

Well...
It's been 12 hours since the last update, and I'm happy and relieved to report WE'RE HOME! Done. Officially on the road to recovery! I've been waiting for this day for longer than you know. They sent us home with a big bag of hospital goodies, and plain old Tylenol for Riley. He's such a trooper, and WAY more tolerant to pain than me or Steve. He was taking a good dose of morphine yesterday, and today all he's had is 2 doses of tylenol. No codene...nothing. I really have no explanation for the 100% turn around in the past day other than a miracle and total answer to prayer. Thanks so much everyone. The surgery is over, but Riley's Journey with craniosynostosis isn't, so, there will be plenty of updates ahead. Our next endeavor: Researching the facts about Pfeiffer's syndrome and Saether Chotzen syndrome, figuring out which one Riley has and how it will effect his life .

For now... I need to get started on the 1 million 756 thousand kisses that I owe my two year old, Cameron!

Here's a picture I took on my phone on our way home!

Thanks for praying and for checkin' in!

Post Op Update 1/7/07 9:05AM

2007-01-07T09:02:00.000-08:00

Nothing but PROGRESS is the update today!!
As you'll notice in the pictures below, Riley opened his left eye today!! He has ENERGY and is eating great!! We had the "OK" to leave today, until...

102 degree fever. Yep. We're SOOO close!! We're not concerned. He really looks great. And is acting more healthy than ever! so...they are doing some testing on his blood and will let us know later on today when and if we can leave. My guess would be tomorrow.

Here are some pictures from this bright morning in HOLLYWOOD!

RILEY - THOSE ARE SOME SWOLLEN LEGS, BUDDY.

A TEAR, AND AN OPEN EYE! PROGRESS MADE!

FIRST SMILE IN DAYS!!

We're "Going to Hollywood!!!" Just kidding. We're already here!

PICTURE FROM OUR ROOM IN THE HOSPITAL

Keep praying, thanks for checkin' in!

Video of Riley 1/6/07

2007-01-06T09:57:00.000-08:00

Turn your speakers on.

Post Op Update 1/6/07 10:09AM

2007-01-05T09:43:00.001-08:00

Over night Riley made some great progress. His heart rate went down considerably, and his tummy isn’t nearly as bloated as it was in the past couple days. Riley was placed in a private room last night so that we could have a bit more privacy in the ICU. We had a rough morning as far as a blood draw. 3 sticks on each arm, a stick in each wrist, and 3 fingers before they were able to get enough blood to test.

The surgeon came in this morning to assess Riley. He told us that once he opens his eyes, and is off morphine, we can take him home. I’m not sure when that will happen yet, because we’ve tried Tylenol with codeine, and it doesn’t seem to touch his pain at all. He’s on a pretty large dose of morphine, and needs it about every two hours. So… we’re definitely not in a rush to get out of here. We REALLY don’t want to take Riley home in excruciating pain. And all they’ll send us home with is Tylenol codeine.

Things are looking good. We’re just praying that his pain subsides soon. Here are some pictures from this morning.

Post Op Update 1/5/07 9:50AM

2007-01-05T09:43:00.000-08:00

Sweet Riley doesn't look much different from yesterday. Maybe a little more swelling, which was predicted by the doctors. They upped his dosage of morphine this morning because his heart rate has been very high ever since he's been in ICU and hasn't gone down at all. The doctor thinks that even though he's doing ok with the dosage of morphine he's on now, and doesn't seem to be in screaming pain all the time, he still is dealing with a lot of pain which is making his heart race. His heart rate is supposed to be at 120bpm and it hasn't gone below 170 since he's been in ICU. When he cries it sky rockets all the way to 230 or so.

Yesterday, the doctor asked that I try and hold him and burp him, because he has so much gas build up in his tummy from crying. So at about midnight, I lifted him out of his bed really carefully (he screamed BLOODY MURDER!!) and calmed him down by holding him close to me. It felt sooooo good to be able to hold him and reassure him that I was there. And that we were doing everything we could to make him feel better. When he finally calmed down in my arms, I got really close to his face and started talking to him and telling him how much I love him. Even though his eyes were swollen shut, I could tell he was awake, because he was trying to put his hands in his mouth and he was moving his feet and legs a little bit. As I was talking softly to him and calling his name, I saw his sweet little eyelashes move ever so slightly, trying SOOO hard to open his eyes to see me. I kept talking to him as if to encourage him to open his eyes, he kept trying, but just couldn't. As two little tears ran down from each of his eyes, I... lost it. He didn't scream or holler. I think he knew he'd hurt too much if he screamed and got upset. Those two little tears were sweet gifts from God last night as my boy tried so hard to see his mommy. I held him a bit longer, and then put him back on his bed. This morning I asked the doctor how long it would be until he could open his eyes. He said probably another day or two, and that today would be the day he would swell the most. We actually just found out that Riley will need another blood transfusion today because of all the blood he's losing from the incision. It was supposed to stop bleeding yesterday, but it still hasn't. This isn't as surprise. We knew he might need another unit of blood.

I actually got some sleep last night. Riley's nurse came and checked on him every 10 minutes or so, and told me to sleep and that she'd wake me up if something happens. So I slept there next to him on the fold out chair for about 5 hours, waking up about every 45minutes to check on him. So, I feel much more rested this morning.

I'll update again tonight. Here are some pictures from last night and this morning.

Keep praying. Thanks for checkin' in.

Post Op Update 1/4/07 11:30AM

2007-01-04T11:25:00.000-08:00

Before the update:
Thank you so much to everyone who has encouraged and supported us in the past couple weeks and months. To those of you who fasted and prayed all day for Riley yesterday, I cannot tell you how humbling, and what an HONOR it is to have people pleading for God's mercy on MY FAMILY'S behalf. It's been such a cool testimony to share with other moms in the Pediatric Intensive Care Unit. My heart aches and sinks to the pit of my stomach every time I look at Riley's sweet face today, but I cannot even begin to explain the amount of peace and confidence I feel in my sons recovery process. I feel so strong! I owe this all to you, who pray, encourage and support us through this situation. Thanks again. SO MUCH.

On with the update...
It was a long night in the PICU last night. Me, and the other 2 mom's (both Christians) talked about each other's circumstances, and one of them even prayed over Riley. Sweet.
Riley is much more coherent today, but he still hasn't opened his eyes, because they're too swollen to open today. The intense swelling will persist for about 2 days. Needless to say, Riley looks EVEN WORSE today than he did yesterday. But the doctor's really did a great job at prepping us on what he would look like, so it isn't too much of a surprise to us. He's still on morphine, and Tylenol for a fever that just won't quit, but the nurses aren't worried and said that the fever is very typical. In spite of the way he looks, Riley made HUGE progress overnight. This morning, the doctor removed one of his 3 IV's, they removed his Foley catheter and remove the draining tube from his head. I spoke with the surgeon this morning, and he said Riley will need to stay in the PICU for at least another 3 days, just because they want the pain and swelling to go down before they place him in a regular pediatric room. We're surrounded by great doctor's and nurses which also helps the situation tremendously. That's about all the news from here. Just waiting for the swelling to subside mainly. We do need prayer however, for Riley's fluid intake. They're giving him a ton of fluid and no one can really understand where it's going. His catheter was pretty much dry all night. His stomach is very bloated, but they said that has to do with gas...it takes a while for the digestive system to get back in order after this type of surgery. Here are some pictures. Keep praying. Thanks for checkin' in!

WARNING. Graphic Pictures.

PRE-OP RILEY / POST OP RILEY

JUST A BIT BLOATED!

PRAYING FOR GOD'S MERCY
(or attempting to put his hands in his mouth!)

RILEY IS AWAKE
Seriously. This it what he looks like when he's awake!

Surgery Update 1/3/07 5:55PM

2007-01-03T17:40:00.000-08:00

FINALLY!! AN UPDATE!!!
The surgeon came out to the room where we were waiting at about 12:00pm and said that the surgery went great! He also told us that when we see Riley, we're going to notice that he looks "WAY WORSE" now than when we brought him in...and he was right!!! They had to do some major over correcting in the reconstruction since his brain has been growing into the wrong spot for too long. So...for about a year, in the doctor's words, Riley will look like a "Neanderthal"(ahhhh). He also has some bolts and screws in the bridge of his nose, protruding between his eyes that will dissolve in about a year... He used 2 units of blood so far, and they told us that those units of blood were directly donated to him by Steve and my Grandpa...which is really cool. Riley is in the Pediatric ICU right now, and will be for at least another 24 hours. He's still in a pretty comatose state, opening his eyes the slightest bit every once in a while. He's also grimacing, and moaning quite a bit. They have him on morphine, so hopefully his pain won't last for too long. When I left the PICU a few minutes ago, Riley had a 101 degree fever. The nurses are calling the surgeon to notify him. Other than that, Riley is perfect and sweet as ever. I'm spending the night in the PICU tonight with about 20 other sick babies, so I won't be able to post until tomorrow morning sometime. Here are some pictures of Riley after his surgery. They're kind of graphic, so if you don't like watching "Life in the E.R." on TLC, then don't scroll down!! Keep Praying. Thanks for checkin' in!

Surgery Update 1/3/07 9:30AM

2007-01-03T09:27:00.000-08:00

It was a pretty long night with very little sleeping involved! We had to stop feeding Riley at midnight, so he woke up pretty hungry! We got to the hospital at 5:30am and checked Riley in. They took us in to get him dressed in his hospital gown, each doctor involved in the surgery came out to talk to us about what was going to take place, and then...away he went. That was a hard time! I don't think I've ever been more sad in my whole life!!!!! But we know he's in good hands. So...now we're just in "wait" mode. The surgery could take anywhere from 4-7 hours depending on how long it takes to prep Riley with IV's. Steve's entire family surprised us by meeting us at the hospital this morning and (check this out) they were ALL wearing T-Shirts they had made with Riley's Picture on it!! So, we have quite the crew hanging out at the hospital...and my little two year old always spices things up!! Anyway...while we're waiting...here's some "before" pictures we took this morning before he went in to surgery. Keep Praying. Thanks for checkin' in!

...and we're off!

2007-01-02T07:39:00.000-08:00

as of 10:30am today, Tuesday, January 2nd, we're off to Los Angeles. We've been waiting for this day for too long, it seems! Mixed feelings engulf my being. Anxiousness, excitement and worry are among the top of the list.

I sent out a mass email to my community of friends as one last plea for prayer!

It's so hard to see Riley so PERFECT and HAPPY right now, knowing that in a few hours he's going to be in a scary, probably very painful situation.

As I rocked Riley to sleep last night, he sat perfectly still in my arms and just stared into my eyes for a good 20 minutes, as if to reassure me that he KNOWS I love him so much. That's all I care about. That he knows that I love him INCREDIBLY.

"God Moments" fill time lately. Funny how that happens when you admit to God how desperate you are for Him!

In journaling this morning I couldn't help but to think...maybe all God cares about is that very same thing. That I know He loves me INCREDIBLY! Sweet reminder. And perfect timing.

If you didn't get my email earlier, here's what It consisted of:
Friends,
Thank you for your continued support and prayer as Riley's surgery date approaches. Riley's Cranial-facial repair surgery will take place this Wednesday, January 3rd at 7:30am. We have to check him in to the hospital at 5:30am to start anesthesia. We're leaving tomorrow, a day early, to get checked in to the Ronald McDonald house, where we'll be staying for the duration of our time in L.A.

Please pray for Riley.
1. We need prayer for his physical health now, before the surgery.
2. Prayer that this surgery would go smoothly.
3. Prayer that our sweet boy would face MINIMAL pain.
4. Prayer for us...that we'll figure out how to deal with everything... and that God would give us a bigger love for each other and for Him through this whole deal.

http://rileyjamesfaiai.blogspot.com will be updated daily with the play by play.

Thanks and Love.
Lauren and Steve Faiai

12.29.06 UPDATE

2006-12-29T21:14:00.000-08:00

Today, we went up to L.A. for Riley's Pre-Op appointment. When we got there, the doctor immediately did a physical check up on him and determined that he was healthy enough for surgery! The doctor WAS concerned, though, about the bulge on the top of his head...where his "soft spot" is. If you follow this blog, you would know that I was worried about this area of Riley's head months ago, and his pediatrician told me it was nothing to worry about. One of the surgeons ordered a CT scan and will call us with the results on Monday. He said he is concerned that it might be fluid on the brain. He said that's probably not the case...Riley's acting perfectly healthy, but he wants to do a CT scan any way.

After that, we took Riley down to the lab where they had to draw blood. I thought this would be an easy in and out procedure...and well...19 pricks later...seriously...19. (They couldn't find the vein), I had to ask Steve to hold Riley down, because I couldn't stand there anymore holding him down as he stared into my eyes SCREAMING while the nurse wiggled a needle back and forth in his arm trying to find a vein! A little traumatic for momma to say the least! GGGRRRRHHHH. Something I'll never be able to erase from my memory!

Between needles and xrays, Riley had quite the day!

We also learned that the surgery will be a little over 3 hours long, and that he'll need at least two blood transfusions during this time.

Seems like we're "all systems go" for now. That is...if Riley stays healthy. Steve and I are both pretty sick, and Riley has a cough and runny nose tonight. PLEASE pray that he keeps healthy.

Thanks to all who called to check on us today. I've been really bad at returning phone calls lately. But please know that your care and concern means a TON!

Tomorrow's Pre-Op

2006-12-28T20:43:00.000-08:00

Tomorrow, Friday, December 29th is Riley's Pre-Op appointment. This is the last appointment before his surgery in 4 days. We're glad this day is FINALLY approaching! We're a bit nervous, but overall, we have peace in knowing Riley's situation is in the hands of our sovereign, all mighty, all knowing, all loving, protector, God!

Riley's cold is almost COMPLETELY gone. I think he actually passed it on to me and Steve!! We're not feeling so hot today.

Tomorrow's appointment is at 11:00am. I think we're taking a tour of the hospital and learning more about what the surgery will consist of.

I'll update tomorrow evening.
Thanks for your continual prayer.

got blood?

2006-12-26T15:57:00.000-08:00

Hey Everyone! We'll we're a week away from Riley's surgery and we have a couple of issues.

Issue 1:
Riley caught another cold. He's totally stuffed up, and has a cough. I'm pretty confident that we can get him better before Friday. But we could definitely use prayers for that!

Issue 2:
We need to store up two more units of blood for Riley's surgery before Friday. Our family has donated, but we need a couple more healthy people to give blood in Riley's name. If you'd be so kind to "get pricked" before Friday, we'd REALLY be grateful! It doesn't matter what blood type you are. Below is the phone number to call to make an appointment. Tell them you want to donate towards Riley Faiai.

Kaiser Blood Donor Center# 619.528.6555

Thanks to all who've already given, or have attempted to!

Santa Monica Appointment Update 12.15.06

2006-12-15T23:34:00.000-08:00

After our 2 hour 10 minute drive, we arrived at St. John's medical center for Riley's appointment. As soon as we entered the office, we were able to be seen by the surgeon, Dr. Kawamoto. He took some pictures of Riley's head, talked to us about the procedure, and told us that Riley is perfectly healthy and ready to go for the surgery! This is a HUGE answer to prayer! 2 days ago, we were wiping Riley's nose every 10 seconds. Today, he was totally dried up and healthy! PRAISE GOD!

Appointment Update 12/14/06

2006-12-14T17:49:00.001-08:00

Riley had BAER test number two today, and we came home with some positive results! Riley has NO hearing loss in his right ear! There is fluid in both ears, so they'll put tubes in both of his ears during his surgery...which isn't a big deal! For now, we know that he has a pretty dramatic hearing loss in his left ear and NO hearing loss in his right ear. Today, the doctor also said that the hearing loss might be a direct effect of the amount of fluid in his ear, and that there's a huge possibility that things could totally clear up once the surgery is over! This is GREAT news, and what we've been praying for. Thanks so much to everyone who has prayed specifically for these appointments in the past 2 weeks. Tomorrow, we're in Santa Monica. Not sure what will evolve from that appointment, but you can be sure that I'll update this blog ASAP!

Speaking of "blogs":
Starting NOW, this blog will be soley dedicated to medical updates regarding RIley's condition. I've started a separate blog where lighter descussion will take place (ie pumpkin patch trips, zoo outings etc...). http://theothercause.blogspot.com

BAER TEST PART 2

2006-12-13T06:48:00.000-08:00

Riley has the second part of his BAER (hearing test) this morning at 8:30AM. He needs to be completely asleep for this test, so pray that he takes a NICE LONG nap during the time he's there. I won't be able to be there, so pray that Steve won't have any trouble on his own, and that God would give him wisdom to ask all the right questions.

Tomorrow, Friday, the 14th, we have our first pre-op in Santa Monica. At this appointment, the surgeon will take "before" photos and will assess Riley's health to make sure he's well enough for the surgery in 3 weeks.

Riley still has a cold. He's getting better everyday, it seems. He's made a huge improvement in the past two days, but he still has a little cough.

Nerves are running higher for this momma everyday. I feel a desperate need to draw close to the Lord, these days, as I try to rely on His peace instead of attempting to control everything on my own!

Thanks for reading...and praying!

Lauren

Today's WILD Adventure!

2006-12-07T22:44:00.000-08:00

Well we took the opportunity to ESCAPE the MADNESS of life and pay a visit to the SD Wild Animal park today! Actually, we didn't "pay" a visit. We went for free. I won tickets on the radio!

Our good friends, the KAYA'S and some of their extended family joined us for a great time of tramming around the park, embracing Kodak moments, and best of all...eating some incredible spam musubi!!!

Cameron and Riley did GREAT! No problems at ALL!

Here are some pictures from our day!

Mommy and her monkeys!!

Look at the Rhino's!

BAER TEST UPDATE

2006-12-06T22:44:00.000-08:00

Riley took HALF of his BAER test today. When the doctor told us it was an extensive test...he WASN'T kidding!! We were there for almost 3 hours, and only finished one ear. Riley has to be completely asleep when they do this test, and a three hour nap was long enough for him I guess!!

Anyway, as has been with EVERY OTHER appointment (it seems), we don't have any conclusive diagnosis! The doctor was able to tell us that there was definitely a TON of fluid in Riley's ears, and that he'll need tubes put in during his cranial vault repair surgery, but she doesn't know what is causing the fluid. There is also something wrong with a nerve connected to his ear. The doctor gave us the great news that Riley WON'T need to read sign language...and also the news that there's a big possibility that he'll have to start wearing a hearing aid.

I'm going to start praying that whatever is wrong with Riley's hearing will be corrected during the surgery. I have peace knowing God will answer that prayer.

Also...Riley is SICK tonight. Maybe the stomach flu. Hope not, but there's a good chance Cameron could have given it to him.

This child NEEDS to get healthy.

PLEASE GOD!!!!!!!

Tomorrow!!

2006-12-05T21:28:00.000-08:00

Riley's BAER test is tomorrow morning at 8:30AM.

As the surgery date approaches, it seems like life for the Faiai's is running FULL SPEED AHEAD! We still have so much to do, before his surgery, and it seems like the days are flying by.

Here's our biggest concern:
Riley has a slight cold. Nothing serious, no fever or trouble breathing, but he's definitely congested and has a cough. I talked to one of Riley's nurses today and told her about his cold, and she told me that if the doctor hears the "slightest sniffle" from Riley at his pre-op appointment next week, they WILL reschedule his surgery. We obviously don't want that to happen. We're taking every precaution possible and are pretty much quarantining Riley from the world. The only kid Riley has regular contact with is obviously his brother, Cameron...who...unfortunately has the stomach flu. Please pray that Cameron gets better and that Riley doesn't catch what his brother has!

Next appointments:
1. Pre-op appointment on Friday, December the 15th @ 2:00PM in Santa Monica with the surgeon.
2. Pre-op/Blood work on December 29th in West L.A.
3. Opthamologist Appointment (not yet scheduled)

Thanks for your support and for keeping updated!
Lauren

Upcoming Appointment

2006-11-27T19:55:00.000-08:00

Hey Everyone!
Just an FYI, Riley has an appointment with the audiologist tomorrow (Tuesday, the 28th at 9:00AM). He'll be taking the BAER test, which is an enxtensive hearing test where they will monitor brain waves. The doctors are hoping that they'll find something that will be able to be repaired during his surgery. I'm hoping they won't find ANYTHING and that this hearing loss is something that he mayh have already grown out of! So please pray for Riley tomorrow (tuesday) @ 9AM.

NEVERMIND.

The Doctor's assistant called and said the audiologist had a family emergency. Steve asked if everything was going to be ok with the doctor's family, and she said "no". So...pray for them instead. Riley's appointment has been rescheduled to December 6th @ 8:30AM.

11.13.06 Update

2006-11-13T19:34:00.000-08:00

Riley had an appointment with an audiologist and the head/neck specialist this morning. If you've read earlier posts, you would have learned that Riley has some sort of hearing loss. He hasn't passed a hearing screening since he was born...he's had 4 screenings done. The doctors say that he has to hear a certain number of frequencies to pass the test, and he just barely fails it everytime. From what WE can tell, he's hearing pretty well. He reacts to our voices and is cooing and giggling like normal, but for whatever reason, he just can't seem to pass these darn hearing screenings. The head/neck specialist led us to believe that Riley's surgery in January should correct this hearing loss. There either may be fluid behind his ear drum or there might be pressure bearing weight down making his ear canal very small. Either way, they scheduled a BAER (brainstem auditory evoked response) test for Riley which might give us a little more detail about what's going on with him. That test will be done on the 28th of this month.

Riley also has an appointment with the optomitrist and opthamologist next month. They want to check his vision before and after the surgery.

Anyway... Thanks for your continual prayer!

Sleep? Not so much tonight.

2006-10-25T02:29:00.000-07:00

Not sure why, but this whole deal with Riley is just kind of running in circles through my brain tonight. I've looked on dozens of websites for support for what Riley is dealing with, and although I have found some good resources, I'm feeling that I still have questions that haven't been answered. So...here's a list of my top 5 questions that I haven't found answers for! If anyone out there can answer these...then please...show some love!

5. Why can't the doctor's know exactly if Riley has Saether-Chotzen or Pfeiffer Syndrome?

4. What are the REAL two differences between the two? They seem pretty similar to me.

3. Is Riley's hearing loss related to his syndrome or synostosis? I know there can be hearing loss in these syndromes but how do I know for sure if Riley's is directly related to his syndrome?

2. As Riley gets older, will we notice more deformities?

1. How come I can't find any info on the internet about this "spot" on RIley's head that we went to the doctor for tonight? I've searched the internet for 3 days trying to find out what this is caused by...there is nothing.

I think I'll try to go back to bed now!! Thanks for reading!

Appointment Update

2006-10-24T19:38:00.000-07:00

Riley is fine. The doctor told us that the bulging and discoloration of Riley's "soft spot" is just one of the effects of craniosynostosis. His brain is continuing to grow, and we're going to see changes as it does because of his condition. Thanks for your prayers. God heard. And then... He answered.

Appointment for Riley...

2006-10-24T16:56:00.000-07:00

A few days ago, we noticed a bluish, black discoloration on Riley's "Antierior Fontinelle" (soft spot on the top of his head). We weren't too worried about it, because it is pretty faint, and just looks like a bruise, but since yesterday, this spot has started to slightly bulge. We called the nurse and she told us that Riley should be seen tonight, just to make sure this isn't anything serious. Please pray for Riley. His appointment is at 7:00pm tonight (Tuesday, October 24th).

Finding the Words...

2006-10-19T21:12:00.000-07:00

The video is cool, but press play, scroll down and read along with the lyrics. This song helps me express to God my desire for Him when my shame is too thick to find the words myself.

From The Inside Out
by Hillsong United
album: United We Stand (2006)

A thousand times I've failed
Still Your mercy remains And should I stumble again
I'm caught in Your grace
Everlasting
Your light will shine when all else fades
Never ending
Your glory goes beyond all fame

In my heart and my soul
Lord I give You control
Consume me from the inside out
Lord let justice and praise
Become my embrace
To love you from the inside out

Your will above all else
My purpose remains
The art of losing myself
In bringing You praise
Everlasting
Your light will shine when all else fades
Never ending
Your glory goes beyond all fame

In my heart and my soul
Lord I give You control
Consume me from the inside out
Lord let justice and praise
Become my embrace
To love you from the inside out

Everlasting
Your light will shine when all else fades
Never ending
Your glory goes beyond all fame
And the cry of my heart
Is to bring You praise
From the inside out
Lord my soul cries out

In my heart and my soul
Lord I give You control
Consume me from the inside out
Lord let justice and praise
Become my embrace
To love you from the inside out

Everlasting
Your light will shine when all else fades
Never ending
Your glory goes beyond all fame
And the cry of my heart
Is to bring You praise
From the inside out
Lord my soul cries out

Everlasting
Your light will shine when all else fades
Never ending
Your glory goes beyond all fame
And the cry of my heart
Is to bring You praise
From the inside out
Lord my soul cries out
From the inside out
Lord my soul cries out

Riley Update 10.17.06

2006-10-18T00:29:00.000-07:00

Today we had an appointment with the pediatric dysmorphologist. We didn't find out much other than the fact that Riley does have some kind of syndrome. He either has Pfeiffer syndrome or Saether-Chotzen syndrome. Both are pretty much the same. Riley had blood drawn today so that we can eventually find out which syndrome he has. The doctor told us that it doesn't really matter which one he has because whatever it is, it's definitely there, and we'll kind of have to treat it as he grows. Right now all that he needs treated is his craniosynostosis (surgery date set for January 3rd, 2007). After that, we'll just kind of have to see how everything goes, and then determine, whenever something looks wrong, if he'll need treatment. Here are some of the issues that could come up with both syndromes.

Saether-Chotzen Syndrome
-fusion of the cranial structures which sometimes produces an asymmetric head and face
-low-set hairline
-droopy eyelids (ptosis) and/or widely spaced eyes
-"beaked" nose and possible deviated septum
-Abnormalities of the fingers and/or toes --
-intelligence is usually not impaired

Pfeiffer Syndrome
-skull is prematurely fused and unable to grow normally (craniosynostosis)
-bulging wide-set eyes due to shallow eye sockets (occular proptosis)
-underdevelopment of the midface
-broad, short thumbs and big toes
-possible webbing of the hands and feet

Right now, Riley is developing mentally at a normal rate, and none of these possible symptoms are noticeable if they exist. We're praying that they don't exist, and that Riley will bounce back after his surgery and not have any issues as he gets older!
We serve an awesome, powerful God and are waiting with great expectation that HE can and will heal our sweet son.

Next, Riley has to see an opthamologist and an audiologist. I will update if any new info comes from those appointments.
If anyone out there knows about Pfeiffer or Saethre-Chotzen email me at lauren@journeycom.org

Thanks for your continued prayers!
Lauren

Grandma's Best Friend

2006-10-15T22:40:00.000-07:00

We went to the desert this past weekend to work on one of our cabins with my family. We've been remodeling for about a year and are getting pretty close to being finished. Steve and I had to be at church on Friday for our Friday Night Service, but we were determined to drive to our cabin that night so that we could wake up early to watch the sun rise. We took Riley with us, so he made sure to wake us up in plenty of time. We sat out on a bench at 5:30AM and watched the sun creep up from between the massive mountain peaks.

My Grandma came out to take pictures of us staring out into the sky. My grandma is an artist, and has done some really awesome paintings for us. As she stood by us, I told her that she should do another painting soon. So...we got on the topic of art and then...my grandma decided to tell us (out of the blue) that her best friend is an artist. She sat there next to me, Steve and Riley and told us about how God is her best friend and that "this" (the landscape) was his artwork.

I know, of course, that God made the earth, but my grandma's reminder turned my attention toward the incredible detail of God's creation. He shaped the mountains with every rock and shrub. He placed the clouds perfectly between the sky and land. He made the sun just bright enough to give us warmth. And the same God who created the immeasurable horizon, created my heart. And yours. And HE loves us immeasurably.

Here are some pictures we took during sunrise out at the desert. Enjoy.

Rocks and Candy

2006-10-12T20:35:00.000-07:00

Cameron, Rhett and Riley played at the park today. Well...Riley kind of just chilled. Rhett is a year older than Cameron and today I noticed a huge difference between the ages 2 and 3. They have a lot of fun, and giggle and laugh a ton together, but sometimes I feel bad for Rhett because every once in a while Cameron's age catches up to him! Like today, Rhett asked Cameron "What's your favorite animal, Cameron?" Cameron knows how to point out and make the noises of many many animals, but the question was just over his head I guess...and he just didn't answer. Rhett asked again "CAMERON, I SAID what's your favorite ANIMAL??" Cameron looked back at Rhett and said "FAVORITE ANIMAL!!" really loud and started cracking up. Rhett just gave up and didn't ask again. With a little help, Cameron finally answered Rhett's question. After that, Rhett and Cameron lined up a bunch of rocks that they found, and I gave them both a piece of candy. Funny how rocks and candy communicates perfectly to any age! I'll make sure to always have some on hand when they play together! Here's a couple pictures of Cameron and Rhett.

Riley's Up Coming Appointment

2006-10-10T16:26:00.000-07:00

Hey all!
Just wanted to let everyone know that Riley has an appointment with the dysmorphologist (pediatric geneticist) on Tuesday, October 16th @ 9:00am. At this appointment, Riley will have some blood testing done along with an extensive physical examination to determine if Riley's deformities are related to Pfeiffer Syndrome. We're praying that's not the case.

One more thing...
After some researching, we realized since Riley's condition is rare, his doctor visits and surgery may be financially covered through " SSA Disabilty for Children". We filled out all the necessary paperwork, so now we're just praying we get the green light for the funds. Pray about that if you think about it!

Thanks So Much!

Shout Out!

2006-10-05T23:08:00.000-07:00

Just wanted to take a few minutes and sentences on my blog to give props to the best neices anyone could ever have! I love you girls soooo much, and I can't tell you how much your constant help with my boys totally blesses me and your uncle Sani. Whenever you girls come to help out, I totally feel at peace knowing that Riley and Cameron are in the hands of family who loves them tremendously. So thanks and much love to the following:

(Real Name followed by Cameron's translation)
1. Krystle aka Keesto
2. Karla aka Kala
3. Lima aka Eema
4. Malae aka Lae
5. Madaline aka nee-nee
6. Leilani aka Lani
7. Lesi aka sho

Love, Lauren

Gimme Some Love...

2006-10-05T17:46:00.000-07:00

Here are some pictures of Cameron loving on his little bro and at one point almost smothering him till he couldn't breathe. Cameron is a great big brother and is already teaching Riley how to give "knuckles".

I also snuck in a picture of Riley and his daddy!

Dreams.

2006-10-04T07:13:00.000-07:00

Last night I dreamed that Riley had his surgery. I dreamed that I walked in the operating room after the surgery and saw his head all bandaged up, his eyes were all black and blue, his face was swollen, and there was lots of blood...everywhere. I was crying and crying and asked the doctor if they could clean him up a little bit more before he woke up. In my dream, I remember REALLY having a hard time figuring out a way to tell Cameron about what was happening to his baby brother, RIley and why he looked the way he did.

I don't want to tell Cameron that Riley has an "Owie", or tell him that the "doctor" had to fix Riley, because Cameron is already deathly afraid of the doctor's office...and he has to make frequent trips to the Emergency Room (see post titled "I Bonky My Head on The Door.") So if you have any good ideas about how I can explain CRANIOSYNOSTOSIS to my 2 year old, clue me in!

Steve woke me up because he heard me crying in my sleep. I was really worried this morning about this whole situation consuming me too much. But now that I think about it, I'm actually kind of excited about the fact that I was able to sleep heavily enough to even HAVE a dream!

Sweet!! I'm going back to bed!

He Gives and Takes Away.

2006-10-01T18:16:00.000-07:00

This weekend at Journey, we sang a song called "Blessed be the name of the Lord" written by Matt Redman. It's an awesome song about praising God through good times and bad. So all day, stuck in my head have been the lyrics "You give and take away. You give and take way. My heart will choose to say, Lord, blessed be Your name." After singing it a hundred times over, I began to think (thus the post) about those words and wonder if they're REALLY true to me in my life.

Our pastor, Ed Noble, was talking about Job in the old testament and how he claimed to never have done ANYTHING to deserve the absolute TORTURE he experienced, and yet, he praised God through his circumstances. I find myself feeling TORTURED by things much milder than what Job faced. Things like the fact I don't own a house, or the fact I don't have a nicer car, and the "ULTIMATE CALAMITY" of always feeling like I don't have enough money. So...as I sing my song, I'm realizing that when I find myself "tortured" and sulking in my despair, all I'm really telling God is that He's not enough for me. I learned at church today that there is SOOOOO much evil that God is witholding from my life, and that the God who created the universe, is the God who gives and takes away, and is the God who created my heart. And he cares for me. And for YOU for that matter. So..when the "goin' get's tough" (and it's getting there), I'm going to really try my hardest to focus on the fact that God loves me and my family more than ANYONE ever could, and that he's here constantly guarding my heart.

If you could...pray that God would strengthen my faith every single day.
Thanks!

THE PARK CREW

2006-09-30T11:56:00.000-07:00

I was looking through all of my pictures on my computer and ran across these three that I just LOVE! The first one is of my good friends Ingvild, Kara, Me, Becky, and Tara (Tara's the one holding the smore). All of our kids are around the same age. Every Tuesday, I used to go to the park with all of them so the kids could play. Unfortunately, I can't go on Tuesdays anymore because of my work schedule. I've been taking Cameron to the park by our house on the day's I get off early. It's actually a nicer park than the one I used to go to, and it's much closer. We can walk there. It's only two blocks away. But, I'd GLADY drive the 10 miles and have to sit in the EAST COUNTY heat so that Cameron could be with his friends and I could be with mine! He still gets to see his friends often, at church and at birthday parties, or any other special events that come up! Actually, Ingvild took Cameron to the zoo a few weeks ago, and Tara watched Cameron for me last night while I had to work. I am soooo blessed to have good friends. I love them a TON! Here's a picture of us, and then one of the boys at the park, and then one of all the kiddo's!! Good Times!

He Ain't Heavy.

2006-09-30T11:16:00.000-07:00

Here's a picture of Cameron when he was 9 weeks old, next to a picture of Riley, taken a few days ago! Cameron LOVES his brother dearly. Riley is deathly afraid of Cameron! I won't tell you which one's Riley and which ones Cameron. Can you guess?

Riley Update 9.29.06

2006-09-29T15:11:00.000-07:00

The Plastic Surgeon's office called while Steve was home this morning. Riley's surgery is set for Wednesday, January 3rd, 2007. We will go up 2 days earlier for a pre-op visit, where we will be able to take a tour of the place, meet with the anesthesiologist, and find a place to stay for the 4 day's we'll be in LA. We'll find out in a couple of days when and where we'll go to give blood for Riley. More details, and thoughts to follow. For now, here's a picture of Riley and also a REALLY cute picture of my friend, Tara's baby girl, Emersen!

Peace? Confidence? Or...Denial?

2006-09-27T03:38:00.000-07:00

Knowing that many people are praying for Riley is VERY encouraging. I have felt God's hand move in amazing ways ALREADY in this adventure. Almost everyday someone asks me how I'm "dealing with everything", or someone will say something like "I can't even imagine the emotions you're going through right now." God has me in a place of peace, but it's hard to understand. I'm not sure if it's peace, knowing that He's in control... or peace, because I know "stressing out" won't make anything better...or peace because I have NO IDEA what to expect.

I'd like to think that this "peace" is a result from this AMAZING faith I have in God, and because I've totally surrendered Riley's life into God's hands...But I think that's hardly the case. All I see in Riley right now is a sweet, happy, strong baby boy. He's doing everything any "normal" baby does. And, although I know that this surgery is going to be pretty intense, I don't think I've dealt with the reality of it all. I think I've pretty much turned my face away from fear of the unknown. Until he's strapped up to a bunch of machines with bandages wrapped around his head, all I can see is who Riley is NOW. I'd actually like to start greiving or dealing emotionally with everything right now, but...I'm just not at that place. There are too many brand new smiles and sweet baby coo's to be crying about anything.

I think it IS God who gives me this peace- eventhough I probably haven't completely surrenderd Riley's life to Him. I think He gives me peace through His grace. In the midst of my sin, my unfaithfulness, my bitter heart, God carries me and reassures me of His love and His power. He's my protector in this time, when I don't know how to keep my own heart safe. He blinds my eyes from fear and focuses them onto the joy that my 8 week old baby boy brings. Sweet little feet and toes. That newborn baby smell. The fun interaction between Riley and his big brother, Cameron. The way Riley always wants to be held tight in my arms. These are the things I'm drawn to.

Could my all powerful God feel the same way about me? Maybe HE'S scared for my heart. Maybe He would rather not experience the hurt I cause Him, but...maybe all he can focus on right now is the beauty of knowing I'm His daughter. His creation. Forgiven. Needing of Him. Wanting Him. Dependant on His hand to carry me.

God genuinely loving me, in spite of me. Now THAT is something worth crying over.

"I BONKY MY HEAD ON THE DOOR!"

2006-09-24T19:23:00.000-07:00

If you've ever met my son, Cameron, he's probably shared this with you! Cameron is definitely classified as an "accident prone" child. He's had numerous injuries. Not just a bump or scratch, here or there. We've been to the emergency room with Cameron 5 times in his two years of life. People tell me that it's just a "boy thing"... but...I'm not buying that because I have friends with little boys who NEVER get hurt. He is not cautious at ALL. Our new favorite phrase is "safety first". But he has a hard time following that rule.

Here is a list of my son's injuries to date (pictures following description):
1. Falling, hitting his head on the granite countertop
2. 2nd day of walking- fell on the hardwood floors, chipping his front tooth
3. Bonk on head- Falling down steps at our apartment
4. Bonk on head- Running into the wall of the "penny fountain" at Grossmont center
5. Broke leg, falling off of playground equipment
6. Busted nose, smacking his head on the glass table
7. Bonk on head- Tried to stand on his toy truck, fell, hit head on chair
8. Cut hole through bottom lip, climbing and FALLING out of his crib. 7 stitches

He's been injured so many times that he tells EVERYONE about his owies. He also tells me about the "bonky on his head" when he's in timeout, thinking he'll get sympathy from me...he does. It works every time. The boy has me wrapped around his finger.

TIME OUT!!!

2006-09-22T22:59:00.000-07:00

After spending two days of writing about my Riley, I decided that there are two other people in my life who are definitely blog worthy. My wonderful husband, Steve, and my adorable, scrumpcious, precious, goofy, Cameron Lee are two of God's GREATEST CREATIONS!

Steve is my absolute best friend. We just celebrated our 3 year wedding anniversary in August. I truly can't picture my life without him and I don't want to. We enjoy being together, watching LOST, cheering on the Padres, writing songs, singing, playing with Riley and Cameron and watching God do absolute miracles through our lives, our friends lives, in our community and in our church. I couldn't have found a better daddy for my boys. Honey, If you found my blog....I love you soooo much my sweet babe.

Now Cameron...
That boy is SOMETHING ELSE! He's newly 2, and is OF COURSE the smartest, cutest, sweetest 2 year old I've ever had! He's a great big brother to Riley has been a GREAT helper to mom and dad...except for this morning. He painted his toenails, and his feet and leg and the carpet! He just learned his ABC's and started singing them by himself today!! But what Cameron is MOST known for are his many amazing injuries, which I'll write a separate post for!As for now. Enjoy the pictures of The LOVES OF MY LIFE.

More Pictures...

2006-09-22T22:19:00.002-07:00

9.19.06 Consultation Update

2006-09-21T12:04:00.000-07:00

Hi Friends and Family!
We arrived home from LA at about 10:00pm last night.
The appointment went well, and was a an AWESOME experience.
As soon as we walked in to the "plastic surgery department" of the medical center, another couple and their 18 month old baby boy greeted us and asked if Riley was going to need plastic surgery. Come to find out, their son has the same thing Riley does. They were there for his post surgery, 1 year check up. He looked perfect!! Which was really encouraging to us! They told us about their experience with the doctor's we're seeing, and they told us some details about the surgery. They were very nice, and a total God send to give us peace before we met with the doctors. Our name was called right at 5:35pm and we were immediately introduced to the team of doctors that will be working with Riley. There were 10 doctors who were all professors at different universities around the US. Steve and I had to pretty much move out of the way as they started to assess Riley. It was a really cool feeling to know that all of those doctors were there to see Riley. I was so overwhelmed that I even asked the surgeon if I could videotape them assessing him! He was happy to let me do so! Our surgeons name is Dr. Henry Kawamoto. We found out that he was actually the first doctor to succesfully separate conjoined twins here in California. You can look him up on a google search.

So...here are the major details of Riley's consultation in Los Angeles yesterday. Hissurgery will happen sometime between December and February. We had a fewoptions about which kind of surgery he is going to have. One involves asmall incision, and one year of helmet therapy, and a chance that theymight have to do another surgery if the helmet does not shape his head correctly. The other option (which we chose) requires a bigger incision, all the way across his head. They will reconstruct everything with one surgery...un-fuse the scull, reconstruct his forehead and reposition hiseye socket. With this option, he won't have to undergo helmet therapy. This seems to be the better option for Riley, and is what the doctors
suggested. Steve and I will go up to LA a few weeks before the surgery to give blood, as Riley will need at least 1 blood transfusion during the surgery. He will spend 3 or 4 days in the ICU.

We see a Geneticist in October to find out if Riley has Pfeiffer Syndrome. If he does have this syndrome, it's a very mild case and he'll probably show no real signs of it, but the reason we need to find out is because if he does have it, he has a 50% chance of passing it on to his children, and it tends to mutate and get worse as generations progress. The doctors we saw yesterday didn't think he was a "Pfeiffer baby"...so that is good...although, they DID find some other anomalies on his body that may suggest some kind of genetic issue. We'll see as our journey continues!

Thanks for your prayers. God is definitely moving.
I'll inform everyone of the date of the surgery when I find out.

A Few More Details...

2006-09-21T11:54:00.000-07:00

The pediatric specialist told us that Riley's case of craniosynostosis is mild, but he IS going to need surgery to "un-fuse" the two plates that are fused together. Most likely, Riley's head will go back to it's normal shape after the surgical procedure. Obviously there are certain risks involved as the surgery will take place very close to his brain. Thankfully there is no pressure or damage to the brain that we know of. Riley will receive treatment at UCLA's medical center, in Los Angeles. We have our first consultation in L.A. on September 19th, where a team of doctors will assess Riley's situation. We should find out more details about the surgery then.

Please say a prayer for our sweet baby boy and for our family as we trust in the Lord that we'll overcome this obstacle and become a tighter, more united family because of it!

Thanks.
Lauren Faiai

The Journey Begins

2006-09-21T11:18:00.000-07:00

After noticing a slight disfigurement of Riley's head, we met with a specialist who diagnosed Riley with "Craniosynostosis" and "probable Pfeiffer Syndrome".

Their are 5 types of Craniosynostosis. The kind Riley has is called Unilateral Coronal Synostosis:
In unilateral coronal synostosis, the coronal suture on one side of the head fuses prematurely. This leads to a condition which specialists refer to as plagiocephaly or slanted head. In this disorder, the forehead on the involved side appears flat, and the opposite side may bulge out. The bony rim above the eye on the involved side is also flatter and may look higher than the one on the uninvolved side and the nose points away from the fused suture. An operation is necessary to allow the brain room for growth, and to restore the normal shape to the forehead. If left untreated, this condition causes a skull deformity that will get worse over time. It also causes facial disfigurement, and could in rare cases cause brain damage. Babies with unilateral coronal synostosis should see a neurosurgeon and craniofacial surgeon to plan for surgery. The goal of surgery is to open the prematurely fused suture, restore the normal shape of both the forehead and rim above the affected eye, and allow for normal brain growth. In this operation, called a "frontal-orbital advancement", the surgeon accesses the bone of the skull through an incision that goes from ear to ear across the top of the head. The surgeon removes the bones of the forehead, reshapes and advances the bone with small plates and screws that will eventually dissolve.

He was also diagnosed with probable Pfeiffer Syndrome:
Pfeiffer syndrome is a genetic disorder characterized by the premature fusion of certain bones of the skull (craniosynostosis), which prevents further growth of the skull and affects the shape of the head and face. In addition, the thumbs and big toes are broader and often shorter than normal. Many of the characteristic facial features of Pfeiffer syndrome result from the premature fusion of the skull bones. The head is unable to grow normally, which leads to bulging and wide-set eyes, an underdeveloped upper jaw, and a beaked nose. About 50 percent of children with Pfeiffer syndrome have hearing loss, and dental problems are also common. Additionally, the thumbs and big toes are broader than normal and bend away from the other digits. Unusually short fingers and toes (brachydactyly) are also common, and there may be some webbing or fusion between the digits (syndactyly). Pfeiffer syndrome affects about 1 in 100,000 individuals.

Until we see a geneticist, we will not know for sure if Riley has Pfeiffer. The craniofacial specialist did find some genetic anamolies on his body which could or could not be related to the syndrome.

BRAND NEW!

2006-09-21T10:54:00.000-07:00

RILEY JAMES FAIAI
DOB: Monday, July 24th
TIME: 2:35 PM
WEIGHT: 5 lbs, 14 oz
LENGTH: 20"

Our sweet Riley James is an absolute JOY! We are so excited and honored that the Lord has entrusted us with another new little life!