Rachel's Journey

Chewbacca

2012-01-21T15:14:00.000-08:00

Rachel got a Chewbacca backpack for Christmas.

She loves that thing.

She loves Chewbacca.

Recently, we went to Disneyland and guess who had to come with us...Chewbacca of course. He was helpful, I must admit, he carried Rachel's sweatshirt, stocking hat, and water bottle.

All day long she talked about him. "Chewbacca's hungry". "Chewbacca's legs are tired". "Chewbacca doesn't want to ride that ride". Thus I give you this blog post...

"A Day with Chewbacca"
Strolling down the middle of Main Street...Having lunch... Enjoying a ride on the Rivers of America...Having a snack...This Storm Trooper wasn't too happy to see Chewbacca... Sitting a spell and deciding where to head to next... Hanging out with our favorite Cast Member before she heads to work...Hoping to visit his friends and family on Star Tours...Waiting for the World of Color to start...I have a feeling Chewbacca will be making many more journeys with us to Disneyland...

The "I Am Hallway"

2012-01-19T21:41:00.000-08:00

Back in October, Rachel went to a photo shoot for an upcoming project at Loma Linda University Medical Center. I am happy to share that this project is now complete and this evening, we went to a reception in honor of all those who participated.

The project transformed the main corridor of the Medical Center into what is now called the "I Am Hallway". Lining this hallway are about twenty pictures, very big pictures. And everyone one of the pictures has an "I Am" statement.

Here is Rachel and her picture:The inscription on her picture reads:
I am Beautiful

"There is something that draws people to Rachel; it might be her sparkling eyes, or gentle heart. It might be her smile that captures others. That smile came at quite a cost to this young girl who has already had 5 surgeries in her few short years. Born with a unilateral cleft lip and cleft palate. She had her first surgery at five weeks of age. The most recent one required a bone graft from her hip to form the front gum line and nose revision. Through it all, she has had a host of people praying for her and her family. The result is beautiful, but everyone knows it’s not the skin that creates beauty—it’s the caring spirit that shines from within. That is beautiful!"

*****************************What a wonderful evening. We met some people with amazing stories. We are very blessed to have been part of such an amazing project.

We were given an 8x10 framed picture of Rachel's picture with her "I Am Beautiful" inscription, as well as a button. All the participants were wearing theirs proudly. The photographer will be putting up all his pictures onto a website soon, so that we can download the pictures we want, for free.

After a few words from the people who made this happen, they went around the room and had each participant introduce themselves and share their "I Am" statement. All very touching. But the one that touched me most of all was when Rachel stood up on her chair, her teddy bear clenched in one arm, head held high, and she said "I'm Rachel and I am Beautiful!".

Spa Day

2012-01-06T19:29:00.000-08:00

For Christmas, the girls each received a gift card for a Pedicure from Uncle Robbie and Auntie. What fun it was to learn that their cousins, McKenzie and Haylee, received gift cards in their stockings as well! So a spa day for the girlies was planned!

Auntie made the appointment and we showed up. The women working in the salon that day were so helpful and happy to see such four cute girlies having a spa day. Because of their age, Rachel and Haylee's gift card covered both a pedicure and manicure. Rachel said she could get used to this type of pampering. That's my girl!!!After being treated to a pedicure and manicure, the six of us girls went to lunch together!! It was a fun morning indeed!

The Month of December

2012-01-03T13:23:00.000-08:00

The month of December was just any other December month, busy!

Rachel participated in the children's choir at our church. She sang up on stage, with the worship team, three Sundays. There's nothing sweeter than seeing kids doing their best and belting out Christmas worship songs. They were adorable! And my sister in law did a great job at directing them. Every year, our school puts on a big production. Last year, it was Willy Wonka and the Chocolate Factory. Rachel really wanted to try out, but the auditions were to begin two weeks after her bone graft surgery. Our Speech Therapist thought it was really best that she not do it, due to the fact that she'll have just had major, major surgery, and we weren't really sure what the recovery would be like for her. So she did not try out last year. So this year, once the posters started being posted about auditions for Beauty and the Beast, there was no doubt in Rachel's mind she was going to try out this year! And thus, that's how the afternoons of the last week of school were spent, auditioning for Beauty and the Beast. By the end of the week, students were sent home with a letter informing them whether or not they'd gotten a part. And indeed, Rachel had gotten a part!!! We will learn exactly what part at a parent meeting when we return to school!We celebrated the beginning of our three week Christmas break and the girls each getting a part by visiting the newly opened Farrell's Ice Cream Parlour in a neighboring city. Rachel not only enjoyed her ice cream, but she enjoyed watching the balloon man make her this silly hat!The first week of our Christmas break found the girls spending two separate nights at Gramma and Papa's house as Mommy and Daddy had functions to attend. It also found us spending and afternoon and into the night at Disneyland with good friends. We knew the parks would be busy seeing it was four days before Christmas, but it was a must to enjoy the sights, sounds, and festivities one more time before Christmas! We dressed our kids in festive shirts and went about the Disneyland Resort snapping pictures with the festive backgrounds and decor. It's hard to believe we've been coming to Disneyland since the two oldest were just months old!! Christmas this year was different, as it fell on a Sunday. Our church had a Christmas Eve Service as well as our normal Sunday morning service. We attended both. Here is Rachel dressed up for singing on Christmas morning at church. The girls all got new robes and fun hats from Gramma and Papa for Christmas, together they make a great fashion statement, yeah?? One of the things Rachel has wanted for months and months has been a Chewbacca backpack. They can be purchased at Disneyland. Steven had told her on several occasions that he'd buy her one if she just would give Pirates of the Caribbean another try. She's not one to make deals real easily. Therefore we got it for her for Christmas. She absolutely loves it!On New Years Eve day, we ended at The Long Beach Aquarium. We had free admission tickets and they were expiring that day. Rachel loved seeing all the fish and beautiful sea creatures. She was picked to help participate in the sea otter show and loved it. It was a nice way to end the year, and end the busy month!

The Month of November

2011-12-01T11:52:00.000-08:00

November marked the one year anniversary since Rachel's bone graft and nasal revision surgery. We're happy to have that behind us. Rachel continues to have Speech Therapy, but it looks like we're heading towards a graduation/celebration ceremony. We're now going every 2-3 weeks in between sessions.

This month was a quiet one for Rachel. Nothing big to report or share. The girls had the last two weeks of November off from school and of course, that found us at Disneyland to enjoy the Christmas season. We found "Gramma" at Disneyland, a rare spotting, and always a treasured picture opportunity. (The four granddaughters think my Mom looks like the Fairy GodMother).My van was due for an oil change this month. Usually I take the car in while the girls are in school, but this time Rachel was with me. Our mechanics were happy to see Rachel and let her in on the fun of adding oil to my van! She LOVED it!Taking a few minutes to slow down and take a picture with Papa.

It's Saturday!!!!

2011-10-28T12:43:00.001-07:00

Our school put on a huge performance this week, thirteen classes participated in ten different performances. This type of show has become a new tradition in recent years and it's proved to be a great evening of entertainment.

The official performance was last night, however, there was a dress rehearsal yesterday morning whereas they run through the entire production working out technical glitches, etc. I was there videotaping for the school. :X

Rachel's class combined with another to do "The Saturday Song". Their costumes were their pajamas and it was absolutely adorable!!

Little Girl Sees Smile for the First Time

2011-10-19T18:08:00.000-07:00

One of our cleft friends posted this video on her Facebook page a few days ago, of course it touched my heart, as I'm sure it will yours.

We fell in love with Rachel's wide smile on August 31, 2004, and fell in love again with her new smile on January 26, 2005.

Photo Shoot

2011-10-06T20:44:00.000-07:00

A little over a month ago, I received an inbox message on Facebook from a longtime friend who works in the Marketing Department at Loma Linda University Medical Center. In addition to attending our previous church together, Shelly was one of my church camp counselors when I was around twelve years old.

Anyways, we talked on the phone later that day about a project that she is working on at work and Rachel came to mind when the project started to evolve.

In the main corridor of the hospital, on the ground floor, the hallway that leads to the cafeteria, they are working to create a project for the halls of that hallway. It will become the "I AM HALLWAY...".

They were searching for past and present patients that had a story to tell, obviously one that included Loma Linda University Medical Center.

Each patient will have an "I am" statement. For example a cancer survivors statement might be "I am a Survivor". And then they will place that statement with the patients picture and include a paragraph about that patient and their "I Am" Statement.

Today, we went to the professional photo shoot! It was pretty exciting. It's always been my intention to share Rachel's story to give hope and encouragement for other parents walking the same road, and always giving the Lord the glory for what He's done in her little life. So to be a part of this project is exciting!

When we arrived, of course there were consents to be signed. And then Rachel and I were given a list of "I AM" Statements, whereas we had to pick five that best described Rachel. I read all thirty of them to her and the ones she came up with were, and in this order : "child of God" (and I explained to the lady taking Rachel's story that not only does Rachel have Jesus in her heart, but for each and every one of Rachel's surgeries and throughout her journey, Rachel had people praying for her), "loved", "confident", "beautiful", and "brave" (for having gone through 5 surgeries already in her short life). The project team will go over all the statements that people chose, etc, etc. And then once a statement is chosen for Rachel, a short paragraph detailing her story and tie in with her "I Am" Statement will be published with her photo and placed on the wall!

Here Rachel is in make up. The make up stylist applied some powder to help with the glare of the lights on her face and a little bit of shimmery lip gloss. Shelly had told us to feel free to bring a couple outfits, and/or a stuffed animal, etc. What ever Rachel wanted to do to make the experience more comfortable for her.

I wasn't worried about Rachel not cooperating. But after watching her today, she's a natural for the professional camera! LOL. I stood there almost wondering if modeling or something even greater might be in her future. Here she is in position for her session with the camera.

The teddy bear she is holding is the one that Papa gave to her last year, the night before surgery. This bear not only went with Rachel to the hospital, but he got his own ID band and got to go to surgery with Rachel! The people we shared that story with today really got a kick out of that! And it is for that reason that Rachel chose to bring this bear with her to her photo shoot. And here, the photographer makes some adjustments and repositions Rachel for more pictures. She had changed outfits by this point. And here is Rachel at the end of her session with Shelly! Thank You Shelly for thinking of Rachel for this project! We are honored and cannot wait to see the end result!!Half way through Rachel's session, they wanted me in make up so that the photographer could snap some pictures of me with Rachel! I was NOT expecting that! Otherwise I would have dressed in a different shirt! But thankfully, after being assured by my Mom over a phone call on the way home, she loved the color shirt (lime green)I was wearing today! So I got make up and my hair softened up just a little bit. And hopefully in this day and age of technological magic, photoshop can work a little magic on me!

We cannot wait for the project to be finished and for the day we can go see our little Rachel gracing the walls of an institution that has played a major part in her life thus far.

Student of the Month - September

2011-09-30T20:59:00.000-07:00

Our little smarty pants came home with a letter a few days ago congratulating us on Rachel being Student of the Month in her class for the month of September!! She was very excited as she's been trying so hard to obtain it!

Here she is being congratulated by our principal, and then by her teacher. And here is an up close shot of our big girl. She was so excited to get a special pizza lunch today and all the goodies that come inside this folder! Way to Go Rachel! We're Proud of You!

Update: Speech Therapy

2011-09-28T21:45:00.000-07:00

Rachel has had speech therapy on a weekly basis since May 2010, with the exception of maybe four or five times we went two weeks between therapy, and those times were due to vacations, Rachel's surgery last November, as well as another time or two. But for the most part, it's been every week for the last 18 months!

We had a normal therapy session on September 14th. And at the end of that session, Dr. D'Antonio thought Rachel was making enough progress in her carrying over and conversational speech that we could stretch to two weeks.

Today marks two weeks since our last Speech Therapy session. At the end of our session today, Dr. D'Antonio thought Rachel had made remarkable progress in her carry over and conversational speech that she suggested we go three weeks in between sessions.

I must admit, I was a little nervous when she said that. We've spent far too much time, energy, and money(!!!) the last 18 months for all of Rachel's speech to go to the way side now. So as she left, we left it at three weeks for therapy, but if I noticed any backsliding or regressing all I had to do was contact her and we'd go two weeks.

So that is where we are with Rachel's speech. Exciting times. Nervous times. At this point, Rachel's next speech therapy session will be in 3 weeks!!

Tae Kwon Do Tournament

2011-09-11T21:39:00.000-07:00

This evening, Steven and the girls had a Tae Kwon Do Tournament. And all did very well. Here, Rachel performs her Green Belt Form.
She places 3rd in her division for Form!
Rachel also placed 3rd in sparring. She had a little bit of a panic in the midst of one of her sparring competitions. Her opponent had punched her in the nose! You know, the nose that had a nose job on last November?? The nose that is still pretty tender?? Yea, that nose. But after some tears were shed and after she was looked over by Mom and Dad, she went back into the ring accompanied by the support of clapping onlookers.She had already taken off all her gear by the time this picture was taken.

She did a great job and was VERY pleased with herself and her accomplishment!

2nd Grade Picture

2011-09-06T21:33:00.000-07:00

Rachel
7 years old
2011-2012

Cementing Her "D"

2011-09-05T21:29:00.000-07:00

We were really at a critical point with Rachel's speech, so we decided that despite it being her birthday, we were going to proceed with our normally scheduled Wednesday afternoon speech session.

Rachel has been having problems with making the "D" sound in her words, especially when they are in the middle of the word (DADDY) and when they are the final letter in a word (hard, card, etc). So for the few weeks leading up to speech on Wednesday, we've really been working on the sound of "D". Drilling it, reenforcing it in our everyday speech, etc.

This last Wednesday, after a little bit of drilling to see where she was, and how she was doing, it was determined that Rachel was ready to 'cement her "D" sound". She'd been hitting it about 90% of the time and it was was time to make it permanent. Thus the reason/need to cement it.Rachel was very proud of her accomplishment, as you can see by the expression in that last picture! It was a fun speech activity to do, even if it was her birthday! :)

Birthday Celebrations!

2011-09-04T19:11:00.000-07:00

Rachel's birthday fell smack dab in the middle of the week this year. So her birthday ended up being celebrated all week long!

Her celebration began on Sunday, when I took cupcakes to her Sunday School class. When you turn 7, you move up to the next class, so this was kinda like a 'send off' for her to the 'big kid class'. Her teacher brought balloons and a gift bag with some fun pencils and a notepad. Wednesday was Rachel's actual birthday. She was up and dressed and ready for school in no time, especially when it meant opening presents from Mommy and Daddy and a package that came in the mail from Great Grandma!When Hannah was in 1st grade, it became my tradition to bring the girls lunch on their birthday. Of course Rachel picked McDonalds. And that is what she got! Hannah scored as well, because it was minimum day schedule, her lunch was immediately following Rachel's, so she scored a couple double cheeseburgers as well. :) Rachel had speech following school, and her and Dr. D'Antonio did a special activity, which I'll blog about separately. But later that evening, we went to Applebees for dinner with Gramma and Papa, which is where Rachel picked to eat!

Friday night was the "official celebration event". LOL. It was small and intimate, just the family (grandparents, and cousins) and became even more intimate when Auntie fell sick, Uncle Robbie had a gig with his band, and Gramie couldn't make it down the local mountain pass and it was completely shut down due to an out of control wildfire. But Haylee and McKenzie were spending the night and having the cousins around always makes everything just fine. Rachel got a guitar from Gramma and Papa. And is already rocking out and creating some tunes!Rachel had a great week of birthday celebrating! She's one blessed kid!

2nd Grade!

2011-08-01T19:25:00.000-07:00

Hard to believe but the baby of the family started 2nd grade today! Wasn't it just a short time ago that we found out we were pregnant with her?!?We stopped by the school midday Saturday to check out the class lists. I already knew who Rachel's teacher was thanks to the modern day of texting the night before (we were at Disneyland). But it's always fun to see who your classmates are, or aren't! Rachel is in Mrs. Dietz' class. She is one of the two teachers I requested. I'm very happy she got Mrs. Dietz. She's been teaching 5th grade for the last few years, but had taught 2nd grade for many years prior to that. She says she loves this age and is very happy to be back in 2nd grade. It looks like Rachel has a great class this year. There isn't the one classmate well known for his troubles and poor behavior, which was a relief. For the third year in a row, Rachel and Isaiah are classmates once again, and Rachel is happy to have her friend with her once again.

And Off Come the Training Wheels

2011-06-20T08:13:00.000-07:00

A few weeks back, Rachel decided she wanted Daddy to take off her training wheels on her bike. And so he did. And after a few tries and Daddy running behind her, she was off....and she's been riding training wheel free ever since! She's a pro!!

To Reschedule or Not to Reschedule the Procedure??

2011-06-15T20:16:00.000-07:00

After talking over the events surrounding yesterday's attempted procedure and a few other details surrounding the recommended procedure, with a friend and trusted medical professional, we are going to not reschedule the procedure.

Dr. Martin did not see visible fistula upon examining Rachel's palate so at this time we're going to wait and see if the hyper-nasality continues to lessen.

Procedure Update

2011-06-14T10:44:00.000-07:00

Knowing that Rachel's procedure was fully covered in prayer this morning, it didn't feel right when so many things were wrong.

They Rachel scheduled for a procedure that required sedation!!! The insurance coverage wasn't what I thought it should be. And there was just a lot of confusion surrounding all the financial stuff.

So I opted to not have the procedure done and we came home.

Thank You all for your prayers surrounding this appointment, they really were appreciated!!!

"For God is not the author of confusion, but of peace..."
1 Corinthians 14:33

Prayers for a Procedure

2011-06-13T16:53:00.000-07:00

Tomorrow morning, (check in at 9:00, procedure at 9:30), Rachel will be having a special procedure done to rule out the possibility of a fistula (hole) in her palate.

The procedure is called a fistulagram and it involves her swishing contrast around in her mouth and then having a special Xray done to see if and where the contrast travels, thus ruling out or confirming a hole, depending on where it travels.

I'm starting to get a little nervous about how she's going to react to having to swish the contrast around in her mouth, I'm sure it tastes nasty.

Would you please be praying that 1) Rachel cooperates with taking the contrast and swishing about and that 2) the results would be negative for a fistula (no hole). Prayers would be very much appreciated! Thank You!!!

When we get the results, I'll be sure to share them.

A Dental CT Scan

2011-06-09T13:19:00.000-07:00

When Rachel had her "special tooth" extracted a few weeks ago, our Pediatric dentist was telling me about a new CT machine that her husbands (he's a dentist too!) office had gotten, just that week. It's the latest and greatest in 3D Xray that allows you splice and move and plan out the dental care of patients for example with orthodontics and oral surgery.

A couple of days after our appointment, we received a call from our dentist informing us that if we brought Rachel in within the next two weeks, for them to practice on Rachel, they'd do the scans free of charge. We took advantage of that idea and worked out a time in which everyone was available. That appointment was this morning.

This new machine circles your head and scans it while you stand still. Rachel did perfect! She stood still and bit the stick as best as she could. Within 10-15 minutes, the scans started to download on the nearby computer. The scans were amazing! Mr. Doctor Hoffer sat and spliced through the scans and together with Rachel's dentist, they kinda sorted out what tooth was what. They were very appreciative of me allowing them to use Rachel as it was interesting to them to see all the adult teeth forming within her gums, not to mention the obvious of her issues of having been born with a cleft. He's going to take her scans and consult with a few orthodontists to see what they think and share the technology with them. But it was amazing to see.

It looks like Rachel has all her adult teeth! Her 12 year molars are already growing and she has many adult teeth starting to push their way up on to the baby teeth. You could also see the area where her bone graft was done. It was all very interesting, and I'm thankful for the opportunity for my kid to be used as a guinea pig! :) Click on the picture to enlarge.
They burned the images, as well as the software to a CD which I was able to bring home and have Steven load on to our computer and he could see the scans for himself. This will be helpful to have with Rachel's medical file that I keep.

The End of 1st Grade

2011-06-07T23:09:00.000-07:00

It's been a busy few weeks, a busy few days. But the girls ended the 2010-2011 school year this afternoon.

Last night after bedtime prayers, Rachel started to cry. She was sad and expressed how much she was going to miss Mrs. Thompson, her wonderful 1st grade teacher. The tears resurfaced this morning before breakfast. Rachel again expressed how much she was going to miss her teacher and her friends.

She made it through the morning, packing up what was left of her belongings in her desk. Made the most adorable frog hats. Had a special time on the carpet where the teacher called each student up and asked what their favorite thing about 1st grade was and then she said something nice about each student and then presented them with a bag of Skittles. The note attached to the bag of Skittles said this:

"You've made it to the top of my chart and heart and now you're ready to Skittle Up to 2nd grade! Congratulations!"

Almost the entire school year, a behavior chart, called the Skittle Chart, has been in place. Depending on what color your clip landed on at the end of the day determined how many Skittles you got. However, due to nutritional rules set in place about a month ago, the reward of Skittles was tossed out the window. But the bag of Skittles and nice note accompanying it was a nice way to end the year.

The minimum day school bell rang and that symbolized the end of the day. Cheers and happy hollering could be heard throughout the school grounds. Rachel had made it through the day just fine, until Mrs. Thompson stood at the door, giving her 1st graders one last hug and goodbye. Once Rachel stepped away, she fell apart, sobbing. Thus resulted in the Mommy shedding some tears too.

Rachel has had a wonderful 1st grade school year. Despite having some really challenging classmates, that at times made learning difficult, she has had a great school year!

Her teacher was absolutely amazing! The challenges she faced on a daily basis were more than any one person should have to deal with, but she always handled the circumstances with such patience and calmness. However, I'm sure there was that underlying desire to want to beat the kid on more than one occasion. :) We tried to convince her move up to 2nd grade, but she's perfectly happy where she's at.

So today, we said goodbye to 1st grade, and thankful we've had such an amazing teacher, Mrs. Thompson!

Appointment with Dr Martin

2011-06-06T20:32:00.000-07:00

It's hard to believe that next week will be 7 months since Rachel's bone graft and nose revision!

We had a follow up appointment with her plastic surgeon this afternoon. We had a letter from our Speech Therapist outlining some concerns she had in regards to Rachel's hyper-nasality in her speech from time to time and her concern for a possible fistula (hole) in the palate.

Dr. Martin checked out Rachel's nose and inside her mouth and while he didn't see anything, he went ahead and ordered a Fistulagram.

The procedure is a special XRAY whereas Rachel will need to swish contrast about in her mouth and then they'll Xray her facial bones to see if the contrast finds any holes in her palate and the contrast travels. This procedure is pretty accurate and this will give us an answer as to whether or not Rachel has a hole in her palate, or if she's just lazy in her speech. I'm pretty sure it's the latter. But it'll be nice to have a test to rule out the other.

The Virginia Reel

2011-05-25T17:00:00.000-07:00

I've shared before that the girls both attend a Magnet School for the performing and visual arts. At the end of every school year, the school hosts an open house whereas kids artwork can be displayed as well as see various performances throughout the campus. Today was our school's open house.

Rachel's class learned and performed the Virginia Reel. They then taught three other classes how to do the dance as well. Rachel ended up being one of the lead couples! She is the one in the blue gingham dress and pigtails.

Rachel's "Special Tooth"

2011-05-24T23:16:00.000-07:00

Rachel had this tooth that was in the cleft of her alveolar ridge (the clefting in the gum). It was high up in her gum, and you really couldn't see it unless you lifted her lip. We've always called it her "special tooth".

This tooth has been a constant headache for years. It's hard to brush and hard to keep clean.

When Rachel had a dental appointment in March, this tooth had developed some decay on the backside of the tooth. Since her bone grafting surgery in November, the tooth had adjusted a little bit and was more exposed.

After consulting with Rachel's plastic surgeon, he gave his okay to have the tooth filled or extracted. She was far enough post op that either was fine.

We opted for the extraction.

So this afternoon, Rachel had her special tooth pulled. While this picture is blurry, this gives you an idea of how Rachel's upper teeth looked, prior to the extraction. You can see a tooth that is a little darker on the top, growing in sideways, that is her 'special tooth'. Or shall I say "was". It's now in a little treasure box waiting to be placed under her pillow. It was a little sad watching this tooth we've referred to as her "special tooth' be pulled. It's just another step in this journey.

Our Pediatric dentist is awesome! Her prescription for pain relief...a free yogurt at Golden Spoon!!! Which is totally awesome because that's always where we stop on our way home from dental appointments. Here Rachel is holding her Rx, mouth full of gauze, and red marks on her nose from where the nitrous gas mask made indentations. Rachel did awesome with the extraction. Our dentist is the best and makes sure there's no pain and the experience is overall a pleasant one, which in Rachel's case, with as much work as she's had done on her mouth and will have in the future is a huge bonus!

Playing Catch Up

2011-05-11T09:35:00.001-07:00

It's been almost two months since I've blogged on any of my three blogs. It seems life has just been busy, or I've been too busy, which is probably the better thing to say.

The last few months have had a few events worthy of sharing...

In Mid April, Rachel's 1st grade class, along with another class, walked about a mile to the local Stater Bros for a tour. Thankfully it was a nice overcast morning and the walk was actually quite nice. Having known someone who's worked for the company for 40+ years (my Dad!), he worked his magic of knowing the right people and we had an amazing tour! Just as good as the one Rachel had when she was in preschool. Although on this trip, the kids each received little nylon Stater Bros backpacks! Which was really cool! Two weekends ago, Rachel participated in her very first Tae Kwon Do Tournament! She was so very excited for the event and did awesome! She got 2nd place for her Purple Belt Form, and she came in 4th for sparring! She was very pleased with herself and her trophy, so much so that she took the trophy to school the very next day to share!Last week marked the one year anniversary of Rachel receiving speech. She's come a long way over the last year and I think we're finally on the homestretch of nearing the end of weekly therapy. Rachel loves to talk, and sometimes talks nonstop. Over the weekend she mastered two new words with the "R" sound we've been working on - 'Dork' and 'Nerd'. It's nice to be paying out the bucks for speech therapy so that you can understand when you're child calls you names. LOL.

Rachel has less than four weeks left of the 1st grade and is doing extremely well! When the end of the school year approaches and it's been a great school year, with an awesome teacher, I tend to get sad. And that is exactly how I feel in regards to Rachel's teacher. She's absolutely amazing and I am so glad I've been able to be a part of her class every Monday morning and be available to help her in various other ways throughout the school year. Teacher requests have already been made for next school year and hopefully Rachel will have the same teacher Hannah had for 2nd grade and it'll be a good school year once again.

In two weeks Rachel sees her dentist and will more than likely have what we refer to as her "Special Tooth" extracted. This tooth is where her cleft was in her gum and always been quite a challenge to keep clean. Now that the back is exposed more, thanks to the bone grafting surgery in November, the back is decaying and it either needs to be filled, or extracted. After consulting with our plastic surgeon, he said since it's been at least 3 months since bone grafting, then either route is fine. Since it is a baby tooth we'll probably go the extraction route. We'll wait and see what our dentist wants to do the day of the appointment.

It's almost been 6 months since Rachel's surgery. It's hard to believe it's been that long, and yet, hard to believe it's only been that short of time. We have a follow up appointment the first week of June with her plastic surgeon and it'll be nice to hear what he says and thinks 6 months post op. That appointment also falls after Rachel's dental appointment, so he'll be able to see how that went as well. The cartilage in Rachel's nose is finally starting to loosen. Her nose has been so hard since surgery, and now, just as Dr. Martin had predicted, it's all softening. I've been following the story of a 9 year old boy who had his bone graft surgery this week, and all I can say is, I'm so thankful to have that part of the journey behind us...

Update: Speech Therapy

2011-03-16T21:16:00.000-07:00

It's been a while since I've updated about Rachel's ongoing speech therapy.

Rachel continues to receive one on one Speech Therapy once a week here in the comfort of our own home. We are so blessed to have a speech therapist that comes to our home to do speech therapy with Rachel. Dr. D'Antonio spends countless hours outside of therapy time preparing and planning for Rachel's speech. We know how lucky we are, for if Rachel was receiving Speech Therapy at school, it would be in a group setting, and not tailored for Rachel's specific speech needs.

It's hard to believe that we're coming up on eleven months of therapy. With the exception of three, maybe four times, we've had therapy every week since May of last year! It's encouraging to see all the hard work paying off through compliments of other people, and the clearness of Rachel's speech.We've recently moved on to the last sound that Rachel needs to master. That sound is the sound of the letter "R". This task will take some time and then it'll be on to some "R" blends and ultimately working on carrying over things learned to conversational speech.

A lot of weeks, Rachel doesn't open up and talk excessively with Dr. D when she comes to do therapy. Dr. D will ask about Rachel's school day and the previous weekend. Sometimes, most of the time, it's like pulling teeth to get Rachel to talk. Which is frustrating because at the dinner table she's the last one eating as the rest of us have finished eating as she's been talking the entire time. LOL. So today, we did speech therapy in a different way...

Today, we went to lunch with Dr. D'Antonio and then went to Toys R Us to help point out some games that could easily be converted to games she can use for speech fun. Being away from the kitchen table, the usual place of therapy, proved to be very helpful. Dr. D'Antonio said at the end of our time together that what she got today was equivalent to what three weeks of therapy would have been. Rachel was talkative and relaxed and had fun looking for sounds she's worked on in the kids menu. It definitely was a nice change for therapy. It also gave Dr. D an idea as to where to go from here. It was a successful outing that may have to be worked again.

Save Smile Train

2011-03-04T08:44:00.000-08:00

It's no surprise that we have a soft place in our hearts for children with cleft lips and palates.

Rachel's lip was fixed at 5 months of age. We in the United States are very blessed to have the health care we have, despite the threats of changes that might someday come.

Children living outside the United States aren't so fortunate. Some children with cleft lips don't have their lip repaired until their well out of of their toddler stage, some even as old as ten years old, sometimes older.

There are two organizations that go into these countries and help provide the surgeries to restore smiles to these children. Operation Smile and the Smile Train are both known for their efforts in this area. And while they both focus on the same sort of problem, their approach is very much different. It wasn't until Rachel's Speech Therapist came into our life last May that we really learned the difference between the two.

Operation Smile takes medical teams into the areas for a few weeks at a time and provides the surgeries for these children, when their time is up, they leave.

Smile Train goes in and teaches the existing doctors in the country to perform the surgeries themselves, thus being able to ultimately treat many more children within their country.

Currently, there is an attempt to merge the two organizations. There is a petition circulating for people to sign, to bring to the attention of the New York Attorney General to stop this merge.

The petition is to save Smile Train and it's way of practice.

The greater the numbers on the petition, the better, so if you would, would you please follow this link and sign the petition.

Your support would be very much appreciated!

Save Smile Train - The Petition

Spring Pictures 2011

2011-02-24T08:53:00.000-08:00

We recently received the girls' Spring pictures back and I couldn't be happier with how cute Rachel's turned out!!! This is her first professional picture with her new nose and isn't she absolutely adorable? :) Our baby is looking so grown up!

3 Months Post Op

2011-02-17T20:50:00.000-08:00

On one had it's hard to believe it's been 3 months since Rachel's surgery. And on the other hand it's hard to believe it's ONLY been 3 months since surgery.Rachel is doing great. Totally back to normal. Nothing to report other than just updating with a 3 month post op picture! She just keeps getting cuter and cuter...

Rachel's Journey Through Pictures: Updated

2011-01-12T06:20:00.000-08:00

Three years ago I put together a slide show of Rachel's journey up until that point.

With the most recent hurdle of this journey now behind us, it was time to add pictures to the slideshow...

God is Good, isn't He???

Post Op Appointment - Almost 8 weeks

2011-01-10T18:16:00.000-08:00

We saw Rachel's plastic surgeon this afternoon for another post op appointment. He wanted to see her to continue monitoring how things went as the stitches continued to dissolve and swelling continued to decrease (all the visible swelling to us is gone, but to a plastic surgeon he sees differently). The visit was quick and sweet. He checked her over inside and out and was very happy with how the surgery had gone. He'd been looking at her pre-op pictures before coming into the room, so he was able to compare what was 'before' and the 'now'.We'll see him again at the end of February. Prior to seeing him, we'll get an X-Ray of Rachel's bone graft to check it's progress and make sure it 'took'. He said he doesn't expect to see that it didn't take, as there would be other signs of rejection at this point. But an X-ray of the area will be the confirmation needed for future orthodontic work that is in Rachel's future. After a few pictures for her chart, we were on our way...

For those wondering how Rachel's incision on her hip is doing, it looks amazing! Dr. Martin said that in a year, because it's so paper thin, you might not even see the scar at all! Again, we're so thankful to have this behind us, and for all the prayers that have been said for Rachel and for us. We are so blessed, so very blessed...

Some Tips Following Bone Graft Surgery

2011-01-03T14:36:00.000-08:00

When we learned back in August that Rachel would be having her bone graft, I immediately went on a search for other families that had already endured this surgery. I searched and searched for personal blogs, message boards, somewhere I could ask my questions and get answers from another Mama that had already walked in these shoes.

My search was unsuccessful as far as those places.

Eventually, I did find one Mom through a Facebook page who's son had had a bone graft this last Spring. I sent a private message asking if I could ask questions. It took weeks for her to answer. And when she did answer, all of her answers to my questions were extreme, it was borderline anxiety producing thinking that's the road that soon laid ahead for Rachel, and for us.

One of my goals of keeping this blog has not only been to keep family and friends up to date with Rachel and her going ons of having been born with a cleft lip and cleft palate, but it has also been my goal to help journalize the cleft specific things to offer help, ideas, and encouragement to all the families that are behind us on this road. I've 'met' many a wonderful Mama's all across the United States, and some even outside of the U.S, where we share the common bond of having a child born with a cleft of some sort.

For the past six weeks, I've been jotting down notes, tips, and suggestions for all of YOU, who will someday in your child's future face a bone grafting to the alveolar ridge. I hope that this post is of help to someone...
******************************************** Length of Surgery
The length of surgery will be different for every child depending on the severity of the alveolar cleft. When I asked at our pre-op appointment for an estimate as to how long surgery would be, we were told 2-3 hours, but that our plastic surgeon doesn't stop until he's completely happy with his work, which is a nice quality to have in a plastic surgeon when having work done on ones face. :)

Rachel's surgery took two and a half hours from start to finish, and that included a nose revision.

Dietary Restrictions
Following surgery, Rachel was placed on a soft food/no chew diet. She was allowed juices, ice cream, soups. Once home, we did applesauce, ice cream, frozen soft yogurt, pudding, mashed potatoes, soups, shakes, graham crackers broken into pieces and soaked in milk.

At our post op appointment, just 5 days after surgery, Dr. Martin told us we could do a soft food diet that included soft foods such as mac and cheese, scrambled eggs, refried bean cups, broken up soft french fries, anything soft that could be chewed with the back teeth.

To get protein in Rachel, we tore up slices of cheese, tore up lunch meat, cooked and diced hot dogs, I took spaghetti and cut the noodles into tiny pieces with my kitchen scissors and served with marina sauce.

After another post op appointment, we went a little further. Cooking and dicing up chicken tenders, mandarin oranges broken into pieces, apples diced up into bite size pieces.

She was not allowed anything hard or sharp, such as chips or crackers. And nothing that required taking a bite with her front teeth, things such as sandwiches (although I did make a PB&J sandwich and cut into tiny pieces to eat in the back of her mouth), chicken wings, pizza, etc, etc.

Rachel was on a soft food/ easy to chew diet for 3 1/2 weeks.

One of the things I found helpful was using plastic spoons. One of the local frozen yogurt places has these great spoons that I save and use in the girls' lunches. They came in handy for Rachel's recovery. They have a very skinny end that allowed for successful dropping into Rachel's mouth the week following surgery. We did not want to take any chances of a metal spoon hitting that sensitive bone graft area, so we used the plastic spoon, and we fed her the first week post op.

Rachel was also not allowed straws or sports top bottles for 3 1/2 weeks following surgery. I found the best thing was to have paper cups sitting on the counter for her to use. A paper cup, if the upper gum or lip should be hit, would be less painful than a hard plastic or glass cup. When she returned to school, I sent a paper cup and a water bottle to sit on her teachers desk.

Feeding Rachel was been VERY difficult. Coming up with things for her to eat has been very stressful. She's become very picky since surgery and sadly has lost 2 1/2 lbs, which on a little girl, is very noticeable. For almost two weeks after Dr. Martin lifted all food restrictions, Rachel was very hesitant to eat. Getting her to eat was very difficult and very stressful as we did not want to see her loose any more weight. But once her fears subsided, and she even began chewing and taking bites with her front teeth, she's been an eating machine! And that's okay with us!

Physical Activity/Restrictions
Rachel was up and walking hours following surgery. It is said that the most painful part of having a bone graft is the pain that comes from the donor site, the place where the tissue was taken, and in Rachel's case, it was her left hip. From Day 1, she had no limp, no pain to complain of from her hip, nothing.

Once school resumed, two days shy of being two weeks post op, Rachel did not participate in PE, or recess. The chance that a ball hit her nose was too great, and would be extremely painful. So I packed her a back pack of new coloring books, new crayons, a tablet of paper, and some other fun things to do while she was 'benched'.

She resumed Tae Kwon Do class, two days shy of it being three weeks post op, and that might have been a little bit too soon, as she woke up the next morning complaining of her leg (specifically the leg where tissue was taken) hurt. It was probably too much jumping and kicking about.

When Rachel was just a few days shy of four weeks post op, she went back to playing at recess and is participating in some PE, she still sat out on the days that PE involved a ball. LOL.

We're thinking that once she returns to school next week, after our three week Christmas vacation, she can go back to playing without any limitations, at that point, she'll almost be eight weeks post op.

Pain Management
Rachel received morphine while in the recovery room for pain, but once in a room, and upon being discharged, she received Tylenol with Codeine. We were told that the only reason she was kept overnight in the hospital was due to the pain and the access of having better pain control as an inpatient.

There were two times in the night that I had the nurse page the on call doctor because it was evident that the pain medicine was not enough. Sadly, our pages were never returned and come morning, we discovered that Rachel had been severely under medicated through the night. When she should have been receiving 10ml of Tylenol with Codiene, she was only being given 2ml, the dosage appropriate for that of an infant. Once we got the proper amount of pain medicine in her system, things changed drastically for the better.

If you should suspect that the pain meds you're child might receive following a surgery might not be enough or doing it's job the way a pain drug should, be persistent about bugging the nurses to page the doctors on call, double checking they are paging the right doctors on call, even questioning the nurse that what she is administering is the proper dosage.

We were sent home with Tylenol with codeine, the proper dosage. And for the first three days, we gave it like clock work, every 4-6 hours as directed. For two nights, we even set our alarm in the night to get up and give her something in her tummy and give her a dosage of pain medication. It was important to break the pain cycle.

With Rachel, you could tell the pain meds began to wear off about 30-45 minutes before the next dosage was due. By Post Op Day 5, we were giving Rachel regular over the counter Tylenol. And by 1 week post op, she was pain free.

Bruising / Swelling
When I initially asked at our Pre Op appointment as to how much bruising we should expect with the nose job, I was told that because they were working with cartilage and not bone, there would be no bruising. That was not the case for Rachel.

Rachel's face began to swell the day after surgery. The worst of the swelling was at 3 days Post Op. And then from that day on, the swelling started to slowly decrease.

As for bruising, the bruising surfaced under her eye and her upper cheek bone on the side of her face where the majority of the work was done (her right side) on Day 4. It was a yellow bruising which usually is an indicator of deep tissue trauma. The bruising was gone within a week.

Nasal Stents
The morning following surgery, Rachel hated those nasal stents with a passion. She screamed, she hollered, she wanted them out! She continued to complain about them, but never once did she try to take them out.

Our plastic surgeon explained to me at the first post op appointment that Rachel's nose had a lot of scar tissue and scar tissue has a tendency to go back to it's original shape very easily. So he always prefers to leave nasal stents in place anywhere for one to three weeks post op. He also told us that it could take up to 6 months Post Op for the nose to settle down and become the new permanent look.

Rachel had nasal stents for twelve days. She was not self conscious about them. She went to church with them in, went out in public with them in, even went back to school for one day with them in.

Returning to School
This is one area that will be different for everyone. We scheduled Rachel's surgery for a time in which she was off track from school. She missed NO school due to surgery, or the time it took to recover afterwards. Rachel returned to school on the very first day back from vacation, which was 12 days post op.

******************************************** These things were the things I felt most important to share and offer some advice.

However, if you're reading this post, and you have questions, perhaps something I didn't cover, please leave a comment, or sign Rachel's guest book and leave your email address and I will email back!

I would love to be able to answer questions or put aside any fears you might have if you're on the brink of having a bone graft done to your little one.

6 Weeks Post Op

2010-12-29T20:50:00.000-08:00

Today marks 6 weeks since Rachel's surgery and I am so happy to report that things are TOTALLY back to normal! About a week and a half ago, Rachel finally started eating like her old self. For a while she was afraid of biting with her front teeth, due to the bone graft to her upper gum. And while she still shows a little favoritism at times to biting things when she can with her back teeth, she is back to eating!! And we are sooo happy about that.

Her eating was really the last concern we had. She really is totally back to normal and we're so very thankful for that!

A Pool Party...In December???

2010-12-27T22:44:00.000-08:00

The week before Thanksgiving found our Pastor and his wife waking up in the middle of the night to a house flooded by an overflowing toilet. Their house has been packed up and put into storage, the drywall has been cut three feet up the walls, and the flooring all ripped out. And they've been living in a hotel for the last six weeks.

We now sometimes call the boys Zack and Cody and how they're all living the "Suite Life".

As tragic as it all is, living in a hotel for six weeks thus far, and really no end date in sight, does have some advantages!

Today was their youngest sons' birthday. He's Rachel's pal at church and at school. And this year, for his birthday party, they had a pool party because the pool was an indoor pool and was heated!! The kids had a blast!!! After swimming Rachel wanted to see where Isaiah's been living and together we boarded the elevator and went to see his Suite. One things for sure, this birthday party will be a memory for years to come. Rachel and Hannah both had a blast swimming in an indoor pool...just two days after Christmas!

Beware of the Neighbor Kid

2010-12-27T14:40:00.000-08:00

If you should happen to spot something resembling that of a periscope looking over your fence, beware of the neighbor kid, for she's spying on you!!When we took the girls to Toys R Us a few weeks back to get some ideas for Christmas presents, Rachel spotted this Backyard Safari Periscope and she LOVED it! After that day, I looked for it a few places and couldn't find it.

But yesterday afternoon, as we were out doing some after Christmas shopping with gift cards and money we'd all received, we found one at Toys R Us!!! There was no hesitation in what Rachel was spending her money on!

Today, was a beautiful day and we spent some time outside putting up the girls' tetherball court and enjoying some sun and Rachel enjoyed her new toy!

Rachel's Christmas in Pictures...

2010-12-25T22:00:00.000-08:00

From now on we shall call Rachel - Ramona!This girl can make some of the silliest faces!! My Uncle bought the girls each one of these!!! How about a picture of the new nose she got this holiday season?!? LOL Getting some love from Papa. My sister in law had this wall background with props
to do 'photobooth pictures'! It was hilarious!!! It was a great day of hanging out and playing with the cousins!

Christmas Eve

2010-12-24T23:21:00.000-08:00

Merry Christmas from our House to Yours!This year, Rachel was in the Children's performance for our Christmas Eve service whereas she played two roles, a shepherd, and a wise man. The kids have been practicing following Sunday morning services for weeks and their practicing and the organization from the ladies who arranged it all, directed it, made costumes, props, etc did an amazing job and the performance was absolutely adorable!Following our church service, we did something different this year for Christmas Eve, we went to my parents house along with my brother and sister-in-law, and our nieces, for dinner.

Following dinner, it was time to get into more comfortable attire! I bought the four girls matching jammies and did they ever look cute!!! This might have to be a new tradition.There were presents from their Great Grandma and Great Aunt and Uncle and cousins to open as well. And Papa and Gramma gave the girls their big combined present - a tetherball court!! My girls were beyond excited!It was a relaxing evening, and not too late. The four girls had so much fun laughing and playing with their new things and just being silly. We headed for home around ten, it had been a full afternoon/evening that resulted in Rachel falling asleep on the ride home, which is only about five miles!

Eye Exam

2010-12-23T18:11:00.000-08:00

For the last few weeks, we've wondered if Rachel might need her eyes checked. We weren't sure if it was her having trouble seeing, or just the adjustments of still learning to read.

This morning, Rachel, Hannah, and Steven, all got their eyes checked. I went last April, so it was everyone else's turn, and for the girls', it was their first time to have their eyes checked outside of the simple screenings they do at school and at their Pediatrician's office.Rachel cooperated very well for the exam, and turns out she's a little far sighted. And to make a long conversation with the doctor short, Rachel will be given a very mild prescription for glasses to wear during her homework and reading here at home, and if she says she can see better when reading, then perhaps she'll then take the glasses to school for reading there as well.

She was pretty excited about getting glasses. And she sure looked cute trying on the different frames. It didn't take long and we settled on a frame and then the technician went to work on measuring and mapping out where her pupils land with the glasses on, etc. And here is how Rachel will look in her new glasses once they've been fitted with her prescription.Good thing we got her nose fixed last month! She's always had trouble keeping sunglasses on her face because of the shape of her nose, and now the glasses will fit just perfectly!

Rachel's New Nose

2010-12-19T08:08:00.000-08:00

I took this picture on Friday morning when Rachel's class was doing a book exchange. She was having so much fun and I just love the expression and smile I captured in this picture. In the last month, we've seen Rachel's nose change drastically. It really is an entirely different nose than what it was.

There are times when I just sit and stare at her little face. A lot of people now say she looks so much like Hannah with the new nose, which is absolutely amazing to me that people see that, and yet it was the work of a plastic surgeon that made her nose to look that way.

There are times when I think her nose is big, shaped a little funny, too this or too that, and then you know what, I look around at all the kids in her class, at the school, in Sunday School, even her little cousins, and they all have some silliness to their nose in some way. LOL. It's just how people's noses are and I'm simply not used to seeing such a 'normal' nose on my girl.

And just like the days and weeks following her lip repair, when you go through a time of missing that 'wide smile' that once was the center of your babe's face, you go through it again after a nose job when the nose has changed so drastically. There are at times I miss her little squishy, lopsided, and flat nose...

Christmas Performance

2010-12-17T22:45:00.000-08:00

The entire first grade put on a Christmas program this week titled "December Celebrations". The songs and poems showcased the different ways that cultures and countries celebrate in the month of December.

Rachel's class sang "Feliz Navidad" and the girls were dressed cute in bright colored skirts and used maracas in their song.On Wednesday, all 100 first graders walked next door to the Senior Center/Apartments and performed in the recreational room for seniors who came to watch. They did a great job and had a warm response from all those who came to watch.This afternoon, they did the performance for all the parents. Again, the five classes did a great job, and it appeared that our class' song was a huge hit and got the best and most response not only from the audience, but the other classes started moving about and doing the hand motions as well. LOL. It was a great performance, and as always, I enjoy seeing my girls, and the other kids perform.

Almost 4 Weeks - Post Op Appointment

2010-12-13T18:47:00.000-08:00

This afternoon was Rachel's 3rd Post Op appointment, Wednesday will be 4 weeks since surgery.

It's always a long shot to guess how long we'll have to wait to see Dr. Martin. At our appointment 2 weeks ago, we sat in the waiting room for less than twenty minutes, in a room, seen, and walking back out to the car within forty five minutes, record time. The time before that over an hour just in the waiting room. Needless to say, we always go prepared. Today, the three of us would have made a perfect picture for an Apple ad - each of us on a different Apple product to pass the time. LOL. After being placed in a room, I asked the nurse if I could weigh Rachel as her weight has been a little bit of a concern. And sure enough, she's down another pound since two weeks ago. She weighed 50 1/2 lbs today, 53 lbs at her pre-op. Her limited diet and her lack of an appetite is taking a toll on her little body. Dr. Martin said everything is healing up very nicely and looks great. Said the tissue in her nose will start to soften over the months. I asked him about the discoloration of her nose last week (that is now peeling) and sure enough, the reason was just as I had suspected. Because her nose swelled so much following surgery, stretching that skin, it was now dying thus changing colors and peeling. A little facial moisturizer will do the trick.

As for the inside, the bone graft and palate are healing nicely. And the best news is that Rachel can resume a normal diet!!! Whoo Hoo! She is free to bite with her front teeth, brush her teeth at the bone graft area, and can go back to using straws and her sport top water bottle! He said to ease into foods the next few days, but that by the weekend he didn't have a problem with her eating chips and crackers, etc. Things a little more sharp, etc. This was wonderful news and upon leaving Dr. Martin's office, and after picking up Hannah from Gramma's, we went to In and Out Burger to celebrate!!! Rachel ate an entire hamburger! I think this was the first meat (other than lunch meat and hot dogs) that she's eaten since before surgery.As we were waiting for our next post op appointment to be made, Dr. Martin came to the desk and told us that they were comparing todays picture to those that were taken the days before surgery and what a difference there was!

Our next appointment is for January 10th. Dr. Martin wants to see us back after all the sutures have dissolved, etc. At that time, she'll be about 8 weeks post op!

Home Sick

2010-12-13T09:07:00.000-08:00

Rachel managed to not miss any school as a result of her surgery, but unfortunately, she's home sick today. The sad thing is that she had perfect attendance up until today.

She woke up early Sunday morning complaining that her arms and legs hurt, to the point she was in tears they hurt so badly. Her little body was burning up, but she had no fever. Her and I stayed home from church as a result.

But after a short stent sitting the bath tub, she felt tons better and we managed to make it to church for her to participate in the dress rehearsal of the children's Christmas performance that will be presented on Christmas Eve. There was no sign of her being sick, so she went ahead and went to Gramma and Papa's house for an afternoon of cookie decorating with the cousins. As the afternoon went on, she went downhill.

This morning, she couldn't handle eating breakfast without a meltdown, a sure sign of her not feeling well, so we told her she'd be staying home school, that made her terribly upset as she really wanted to go to school. When I returned home from taking Hannah to school, she was back in bed, with her TV on, sleeping. She's not eating much, and really hasn't been much since surgery. And when she does eat, admittedly so, her diet has not been a well balanced one. It's hard to come up with foods that are soft or can be eaten in the back of the mouth without taking a bite with your front teeth (ie sandwiches, crackers and peanut butter, cheese, etc). We have a post op appointment this afternoon and we're hoping that she'll be released as far as her diet limitations are concerned.

But as for her not feeling well, we're not sure what it is. A virus perhaps??

3 Weeks Post Op

2010-12-08T15:09:00.000-08:00

This last Monday, I was going to lift the restrictions for Rachel as far as PE and recess goes. But upon learning the activity for PE that morning was going to be Dodge Ball, I forbid her from playing. LOL. Poor girl was so upset. All she wants to do is go back to playing and free from being 'benched'. She was allowed to play at lunch and recess, with the firm warning of avoiding the tether balls and any other activity on the black top whereas a ball was in use. She assured me she would heed my direction. Rachel also resumed Tae Kwon Do this last Monday night and Tuesday morning she woke up with her left leg hurting, this is the leg they took the hip bone tissue. With all the kicks and jumping about, I think it might have been a little soon to have resumed such activity, this was the most physically she'd done since surgery.

Yesterday, when she came home from school, her nose looked dirty. Upon trying to wash her nose, the darkness was not washing away. The skin also felt rough and dry. My thought was that her nose had swelled so much in the days following surgery, stretching the skin so much, that perhaps now, the skin on her nose will soon start to peel. I shared my observation with Dr. D'Antonio this afternoon during our speech session and she said it's nothing to worry about and all just part of the healing process. I'll continue to keep my eye on it and see how what happens.

Diet remains the same with soft foods, easily chewed foods in the back of her mouth. Maybe the restrictions will be lifted when we return on Monday for our 3rd post op appointment with Dr. Martin. I think she's tired of the altered diet and can't wait to eat normally again!

Thank You for the continued prayers for Rachel's recovery, it's because of those prayers that her recovery has been a good one!

Surgery and Rachel's Speech

2010-12-03T08:52:00.000-08:00

Upon getting in to Rachel's mouth, Dr. Martin discovered an extensive hole in Rachel's hard palate that extended all the way back to the soft palate. He fixed it. And as the days went by following surgery, as the swelling started to decrease inside her mouth and in her nose, I started to notice Rachel's speech was sounding differently. It was more clear and crisp. Once the nasal stents came out, it was even more noticeable.

This past Wednesday, Rachel had speech therapy. It was the first time Dr. D'Antoino had seen her and heard her since surgery. It was a lot of work to get Rachel to talk that day, she was tired from school, shy for some reason, all the while still just being 2 weeks post op from major surgery.

But the little that she did talk was just enough. I wasn't wrong in my thinking that Rachel's speech had changed. Dr. D'Antonio heard it as well!! Rachel had less nasality (because the hole in her hard palate had been closed) and her production was clearer. Dr. D'Antonio was very excited and very pleased with how Rachel's surgery had already affected her speech. Dr. D'Antonio and Rachel, the week before surgery.
Rachel still has a lot work in regards to her speech and sound production. But it's exciting to have this positive outcome from surgery and we really weren't expecting it!

2 Weeks Post Op

2010-12-01T15:54:00.000-08:00

It's hard to believe it's been 2 weeks since Rachel's surgery. Needless to say, we're sure happy to have that behind us and be on this side of it all.

Please look beyond the messy hair and the chocolate residual around her mouth. LOL. She's about had it with me taking pictures of her. But I just want to document her progress for our own sake, as well as for our cleft affected friends who will endure this 'adventure' in the next few years. She continues to look better and better each and every day. The redness around her nose is subsiding and so far there's been no swelling that Dr. Martin mentioned could happen after the removal of the stents. She has a few scabs in her nose, along with dissolvable stitches, but it's all looking great for just having had it all done 2 weeks ago.

Rachel returned to school as planned this last Monday. We had been on break since November 10th and Monday was the first day back to school. So Rachel has missed NO SCHOOL due to surgery or her recovery. Praise the Lord!

She has a special backpack that is packed with new coloring books, crayons, and some other activities to do during her PE, and recesses. Sitting out is simply a precaution to her getting hit in the face, nose bonked with a ball, etc. But so far, she's doing well and she has quite the following of friends who sit during their recesses and keep her company and color with her. Upon returning to school on Monday morning, Mrs. Thompson let me talk about Rachel's off track adventure of her surgery and spending the night in the hospital and what the things in her nose were (nasal stents) and most importantly how we need to be careful to not bump her, hit her in the face, etc. When I visited Rachel at lunch, her classmates shared Rachel's story with other kids who came to the table to see what the crowd was about. It was cute how they were so caring about her and concerned that every one knew not to bump her. There's been no negativity from any of the kids about Rachel and her 'new look'. It makes my heart smile to know she's surrounded by such loving and caring kids.

Post Op Appointment - 12 Days Post Op

2010-11-29T18:12:00.000-08:00

It's been 12 days since Rachel's surgery and today was our second post op appointment.

Our appointment was at 3:00 and we went anticipating a long way as usual. We even had visitors waiting in the waiting room for us - Joy, Aiden, and Lexi! It was great to see them, but our time together was short. We didn't even get a picture for our blogs! We waited 15 minutes in the waiting room and were called back to a room.

Here is one last picture with her nasal stents in. This picture really shows how skinny her face has become. I weighed her while in the office and she's lost 1 1/2 pounds since surgery. That's a lot of on a little body.Dr. Martin was very pleased with how things were healing up on the inside as well as the outside. So much so, that he took the stents out!!! Rachel started crying when he clipped some of the stitches. But she was relieved to have the stents out. We need to continue on a soft food/soft chewing diet, nothing crunchy, until we see him again in two weeks. Dr. Martin reminded us that her nose could swell up a little bit but it'd come back down. Her nostrils have also been stretched because of the stents, but in time they should lessen in size as well.

So our appointment went well, it was record time - in and out in forty minutes! And we return to be seen on December 13th, when perhaps her diet restrictions may be lifted, just in time for Christmas cookies!!!

10 Days Post Op

2010-11-27T10:15:00.000-08:00

Not much is happening in way of Rachel's post op recovery. With the exception of the nasal stents and the modified soft diet, she is totally back to herself!!!

It's been four days since she's had anything for pain.

She's feeding herself now, we were pretty cautious the first week of that bone graft and didn't want her to bump it, etc, so we were feeding her, when she actually ate.

The swelling in her face is completely gone as far as we can tell.

The girls school resumes on Monday after two and a half weeks off track and Rachel can wait to get back to school. She's not bothered by the nasal stents and has no problem going out in public with them in. She has a post op appointment on Monday afternoon, so perhaps she'll only have to go to school one day with them in.

1 Week Post Op

2010-11-24T14:23:00.000-08:00

It's hard to believe that a week ago, we were sitting in the waiting room of a hospital, waiting for the page that one of us could go see Rachel in the recovery room.

Overall, the first week following surgery has been a good one. There's been a few meltdowns as to not wanting to eat and thus take the nasty tasting pain medication, but other than that, there's been no complications, no major problems. I know recovery has been relatively easy because of all the people still praying for Rachel. Thank You.

I failed to mention in my post following our Post Appointment that we can brush Rachel's bottom teeth and upper back ones. We did just that yesterday. It had to have felt a ton better having a fresh mouth.

This morning, the swelling looks considerably lower. And the bruising seems to be subsiding as well. It's great to see the sparkle back in her eyes and her overall look getting back to normal.

Be sure to scroll down to the next post. I posted pictures, one from everyday of the last week. It's amazing to see the changes from day to day.

The Last Week - In Pictures

2010-11-24T12:24:00.000-08:00

Before SurgeryIn the Recovery Room Day After Surgery 2 Days Post Op 3 Days Post Op 4 Days Post Op 5 Days Post Op 6 Days Post Op 1 Week Post Op - Wednesday, 11-23-10

A Divine Appointment

2010-11-22T22:28:00.000-08:00

I've mentioned twice before about "Divine Appointments". The first one was years ago when we met a couple at Lowe's who had a son with a cleft lip and palate. I refer to that as our Divine Appointment at Lowe's. And then there was a shift that I was working a few months back whereas I worked with a nurse that had had a cleft lip and palate and numerous surgeries. I refer to that as my "Divine Work Day". Today, while my Mom and I waited in the waiting room for Rachel's Post Op appointment, I had another Divine Appointment.

*****************************My Mom and I were sitting, waiting for Rachel's name to be called. Mom was knitting, Rachel was playing on Gramma's iPod Touch. And I noticed a young mom, who was also accompanied by her Mom, sit down across the room with a baby. I whispered to my Mom that the baby appeared to have a cleft. I could tell from across the room that her lip was taped and might have even had a NAM device in her mouth.

It was hard not to stare. Not because the baby had a cleft lip, but because me and that Mama, we shared something. We were walking the same journey of having had a baby born with a cleft.

My Mom encouraged me to go and talk to her. I couldn't at that point. All the emotions of last weeks surgery was too fresh. The emotions of knowing this was a Divine Appointment was almost too much to handle.

Shortly thereafter, some seats opened up right across from us. I watched the Mom holding her precious cargo motion to her Mom that they should move seats. I whispered to my Mom that it looked like they were moving over, and she referred to it as a "Divine Set Up." The Lord was going to open up the doors to talk this Mama after all.

And that's what happened. We made eye contact and started talking. Turns out, she had recognized me and Rachel from having visited this blog!

Her baby girl is six months old and has a bilateral cleft lip, and Is currently driving over 75 miles one way every week to the dental school to have her NAM adjusted. She was seeing Dr. Martin today in hopes of getting surgery scheduled for her lip repair. She's been told Dr. Martin's surgery schedule it full until March.

The other thing I shared with this Mama - she and her husband did not learn of their baby's cleft until her OB was performing a C-Section! None of her ultrasounds done through her pregnancy ever focused on the baby's face, only her major organs and measurements. Her story was like ours.

It's always nice to meet other Mom's traveling the same journey. Makes our little 'cleft world' seem a lot smaller than it is. And I'm always thankful for the divine appointments the Lord sends my way.

It's always been my goal in keeping this blog to offer hope to parents just starting out on their journey, to help give information from a family that's already walked the stretch of journey they are currently walking. And today, with meeting Melissa and Aubrianna, it gave me great pleasure to know my blog had done just that once again...

Post Op Appointment

2010-11-22T14:51:00.001-08:00

This morning, Rachel had her first post op appointment.

Our appointment was at 10:45 and we were in a room by 11:25 (not bad!!!). We ended up arriving a half hour early because we thought parking was going to be more of an issue. But it turns out the Lord had another Divine Appointment for us and I'll share that in another blog post.

It's a beautiful day and I thought this made for a cool picture. The building is Loma Linda University Medical Center and Children's Hospital, which is where Rachel's surgery was done.Dr. Martin was very pleased with how Rachel was looking on the outside as well as on the inside (her bone graft).

Rachel had a tooth that had grown in sideways in the cleft of her gum and I asked if he had to remove that. He did not. But what he did remove as a decayed and rotten tooth that had grown up into her nasal cavity (common in cleft children). He said this was the cause for the horrible smell we'd been noticing coming from her nose the last six to eight months, which was one of our concerns when we saw him in August.

The nasal stents need to stay in place for at least another week. Dr. Martin explained that there was a lot of scar tissue in her nose and scar tissue has the tendency to go back to how it was. Typically, stents stay in place for 1-3 weeks to keep the scar tissue from going back to how it was prior to surgery. So she has the nasal stents at least for another week. He also said it could take up to six months for her nose to become her 'new normal' look. Her diet has been changed from a no chew diet to a soft food/no chew diet for example scrambled eggs, mac and cheese, etc. When I told him I considered those things to be a chewy food, he said she could have soft foods that didn't require chewing in the front, because of her bone graft.

After a few pictures were taken for her chart, and an appointment made for next Monday we were done. We went to Baker's for lunch where Rachel feasted on broken/bite sized pieces of french fries, a chocolate milkshake, and some bites of a bean cup!! She was loving it!

Post Op Day 4 - Rachel's BACK!

2010-11-21T15:06:00.000-08:00

Rachel is back! And back full force! LOL.

Last night we gave her pain meds at 8:30 and then decided to see how she did through the night. She slept the night through and did not take any more pain meds until 7:30 this morning. She was going to be spending the morning with my Mom while I went to church, so I gave Rachel some pain meds just in case. I've decided to start weaning her off the strong pain meds and will give her regular Tylenol this afternoon if she says something hurts.

Today, the bruising in Rachel's face really surfaced. It started to surface a little bit last night when I was cleaning up Rachel's nose. I thought it was Bentadine left from the surgery. When it wouldn't wash off, I knew it wasn't Bentadine. LOL. Rachel did a great job at eating for my Mom this morning. They made chocolate pudding with whip cream and she ate that. Gramma made her some mashed potatoes and she ate those. And she took a few glasses of White Grape Juice. Ahhh, the magic of Gramma!

I ran to the store for a few things and came back with whip cream since she liked it at Gramma's. Who needs chocolate pudding or pumpkin pie when you can make whip cream snakes!Tomorrow we have a post op appointment with Rachel's plastic surgeon. It'll be good to see him and have her check out Rachel and hear again how the surgery went, etc.

Post Op - Day 3

2010-11-20T11:22:00.000-08:00

We are now three days Post Op and Rachel just keeps getting better and better as the hours pass. We once again set the alarm for a middle of the night pain med. After a cup of applesauce and Tylenol taken, we were all back in our cozy beds within ten minutes, where we slept until after 7:00, when Rachel came in to snuggle with us.

We were able to stretch the next dose of pain medication to six hours. She wasn't saying she was in pain, but again, we're trying to stay atop of the pain cycle for a couple of days. Just the fact that she went that long without getting grumpy was awesome. Yesterday she would start melting and become grumpy about 5 - 5 1/2 hours. This was a great accomplishment.

This morning, for the last several hours, she's been on the floor playing with Lego's, putting together a new set. She's talking more and even trying to smile the best she can. I noticed she has a little bit of her sassiness back here and there. Post Op instructions were "No Baths" but showers were okay, this is because of the incision above her hip bone. With some hesitation on her part, we proceeded with a modified bath whereas I only filled the tub about 3 inches. She admitted it did feel better to get a little bath. Now we just have to convince her to let one of us wash her face.

This is the incision from where the bone graft was harvested from her hip bone. When she came out of surgery, there were no bandages, no stitches. They closed her up using a superglue-like substance. The swelling around the area continues to go down with each passing day. There's really no evidence of it slowing her down, or being a hindrance to her. You do have to be careful with side hugs and squeezes, as she sometimes grimaces if you squeeze too hard. Rachel received a package in the mail this morning and inside was this cuddly bear. I convinced her to let me take a picture of her with her bear in hopes of getting another shot of her face. It worked. The swelling is really down from yesterday.This morning Hannah told me what Rachel had told her. Rachel told her that she didn't like looking at herself in the mirror because she was ugly. That broke my heart. It's hard for her to comprehend that in a few days, everything will be back to normal and she'll look like the usual cute Rachel. We've spent the last six years telling her how cute she is and building up her self esteem. It's sad to know she thinking this way. Last night, she mentioned wanting to go to church on Sunday, but after hearing what she thinks of herself, and how self conscious she is right now, I think it'll be better to not take her to church. There'll be kids that ask her what's wrong with her face, or what are the things in her nose. Forget the kids, there will be adults that will stare and make a big deal of her face. Better for them to do that next week when she's feeling better about herself.

Things are going great and we only anticipate it to continue to go well! Thank You again for praying for Rachel.

Mug Shot

2010-11-19T14:35:00.000-08:00

Rachel's taken a great turn in the last hour. She's asked to get dressed, is being silly in a non talkative way, and has been trying to tickle me. LOL. It's soooo good to see her taking this turn.

There's a lot of swelling up around her left eye. But it's much better now than it was earlier today. Her mouth is still too sore for a smile, so this mug shot picture will have to do!

Thank You

2010-11-19T10:21:00.000-08:00

Over the last few days there have been countless numbers of people coming to Rachel's Journey to check up on her progress, sometimes several times a day.

Some of you are family, some our friends, some are complete strangers who've never even met us, but continue to check in on Rachel.

Thank You. Thank You for all your thoughts and prayers said on behalf of Rachel, for our family.

Thank You for the kind emails, Facebook comments, guestbook comments, and texts.

We are truly honored and blessed to have had Rachel touch so many lives.

Friday Morning Update

2010-11-19T08:12:00.000-08:00

We had a good night.

Rachel was so cute last night, I was in our room putting some things away and she wandered into our room, crawled up into our bed, and snuggled beneath the covers. We watched TV in our bed for a while and just let her sleep with us for a while. We set the alarm for 1:00 which was when she could have her next dose of pain medication.

Around 11:00, she was moaning and tossing about a lot. When the alarm went off at 1:00 we got up. It was a bit of a struggle to get her to eat, but she gave up and sat smack dab in the middle of the kitchen floor and that is where Steven fed her some applesauce and we gave her some medicine. From that point, she went into her own bed and we all slept until close to 6:30am.

She did well at eating something this morning and taking more pain meds. We are trying to break her pain cycle and stay on top of giving her pain meds every 4-6 hours. Especially since her pain was so uncontrolled the first night.

The swelling around her hip incision is going down quite nicely. But her face continues to swell. Just below her right eye is so swollen it's almost shut. Her little face has gone through so much, it's no wonder it's as swollen as it is.

As for her nasal stents, she's stopped complaining about them!!! I know it's a result of all the prayers specifically for that. Thank You!

Home Sweet Home

2010-11-18T20:14:00.000-08:00

After a trip to Golden Spoon for some yogurt to bring home, and a stop at the pharmacy for Rachel's pain meds, and a stop off at Gramma and Papa's house, we are home!

Rachel has eaten a rather good size bowl of graham crackers and milk and has drank a good amount of water. She is now comfortably sitting in the recliner watching a new movie that Gramma and Papa bought her. Here's hoping and praying for a good night's sleep for all of us!

Going Home!!!!

2010-11-18T19:00:00.000-08:00

Rachel was pretty much over having her picture taken by this point, thus the reason she's hiding behind her bear. But it was so nice to be going home! I can't imagine the families who spent countless days, weeks, and some even months in the hospital.

The Afternoon Update / Good News

2010-11-18T18:39:00.000-08:00

After our visit to the classroom downstairs, the afternoon continued to go well. She drank a little bit more and felt well enough to be wheeled downstairs to an event going on for the children. They had policemen and firemen and crafts to do. It was a nice diversion to sitting in her room and despite not feeling 100%, I think she enjoyed the difference in scenery. Especially when Gramma and Hannah came by for a visit. This was the first that Hannah had seen Rachel in person and I think it did them both good. After our outside diversion and visit from Gramma and Hannah, it was time for some more juice and pain meds. It was a bit of a struggle as Rachel does not like the taste of the medicine, but we eventually got it down her. But only after being told I was "the meanest mom in the world". She fell asleep shortly after that.Rachel was napping and Steven and I were each on our own electronic entertainment of our choice and we'd pretty much resigned ourselves to staying late into the evening, if not overnight once more. It was just after 4:30 that the Chief Resident who assisted Dr. Martin in surgery came by. He said since she was drinking more and eating some, we were welcome to go home if we wanted. Um YEAH! As long as we were sent home with Tylenol with Codeine. The orders were written and Steven started taking things to the car. It wasn't long after that that I signed discharge papers and the nurse removed the heplock. And we were outta there!!!

A Turn for the Better

2010-11-18T13:13:00.000-08:00

It's amazing what the proper dosage of pain meds will do for a person.

After getting Rachel to take the correct dosage of pain med, she fell asleep for about an hour.

After her nap, she was visited by a hospital person who invited her to the school room downstairs. Having had the pain meds kick in, she wanted to give it a try. So we put on her jammie pants, combed her hair, and dawned her boogie shoes (new crocs that Gramma and Rachel have named her 'boogie shoes'). Daddy found a wheelchair and off we went, downstairs to the school room where Rachel made a Thanksgiving card craft and then worked a puzzle. We saw sparks of our Rachel coming through. The pain meds definitely worked. Upon coming back to her room, she ate an entire applesauce cup and the rest of her pudding cup that she'd started earlier!! She's not due for any more pain meds until 3:30. So hopefully she'll continue to be on the up swing and will continue to eat and drink as the afternoon continues.

Morning Update

2010-11-18T09:49:00.000-08:00

The residents came in earlier this morning. We need Rachel to be drinking more and eating before we can go home today.

Since they left, and the change in nursing shifts has occurred, we discovered Rachel had been under medicated in her pain meds all night long.

To give an idea as to how under medicated she was, she was getting 2 ml when she should have been getting 10 ml.

And then to top it off, to avoid the nasty tasting medicine, she wasn't being truthful when asked about her pain. Grrr.

The meeds have been adjusted and she received a dose about half an hour ago and she is now sleeping. Our hope is that once the pain is under control, she'll feel more like eating and drinking!!

Our Night

2010-11-18T05:40:00.000-08:00

Our night is winding down and soon the unit will be filled with the hustle and bustle of the changing of the nursing shift and doctors coming in to make rounds, etc.

Rachel's night over all went well.

She woke up shortly after Daddy, crying and asking for him to come back, she wanted both of us here and she didn't understand why we both couldn't stay. She eventually calmed down and went back to sleep for a while.

She was up around midnight with a trip to the bathroom, a dose of Tylenol, and the nurse attempting to clean around her nose. The nasal stents are a complete bothersome to Rachel and it's hard to tell if her pain is as bad as it really is, or it's the extreme discomfort of the stents in her nose. Trying anything to soothe her, I suggested a walk around the unit. A few steps out her door, she said it hurt too much to walk and requested a wheelchair. So the nurse found one. But pushing the wheelchair and an IV pole was too much of a challenge so we called it quits and went back to bed. She calmed down and drifted to sleep.Around 4:00, I heard Rachel whimpering in her sleep and I went to get the nurse. It was time for another dose of Tylenol with Coedine. After a trip to the bathroom and an attempt at cleaning up her nose, she was comfortable sitting up for a while. So at 4:30 this morning, she sat cross legged on her bed, sorting through the Silly Bandz that Uncle Robbie and Auntie brought her and the gift bag of things our friends brought to her last night and even colored for a while.We snuggled for a while in her bed for a while and fell asleep shortly thereafter. Her IV alarm went off a while ago, and I had to go get the nurse, so I decided to just stay up.

The nasal stents are a huge bothersome to her. She detests them and wants them out NOW! Unfortunately they have to stay put for a week. She's peeing, taking water, and has walked. But she hasn't had any juice or soft foods. So before we get the word of getting to go home today, she has to do those.

Please be praying for the stents to not be so bothersome and that she decides to drink and eat.

In A Room...Finally

2010-11-17T22:00:00.000-08:00

After nearly four hours in recovery, waiting for a bed on one of the units, Rachel was finally moved to a room just before 7:00 this evening. She's in a regular bed, and has already been up and walking to the restroom.

Once settled, Uncle Robbie and Auntie were able to come up and say "Hi". Gramma and Papa were the next to come up and visit. They had a present for Rachel, a Pediatrician Barbie Doll. Unfortunately, Hannah is too young to come up on the patient floor, but thanks to modern technology, she was able to video chat with Rachel with the help of our laptop and Gramma's iPod Touch!! Rachel also got to see her cousins that way as well. A friend of the family is a Pediatric nurse here at Loma Linda and she was a huge help this evening in many ways. Rachel had been frustrated that she had to stay in her hospital gown and not change into her new jammies that friends had brought her last night. Wanda stopped her IV, took off the pulse ox, and got her changed into her jammie top and underwear. That made Rachel happy.Wanda also made Steven and I dinner - chicken noodle soup! She made it from scratch and brought it work and warmed it up for us and served it to us in Rachel's room. We were both pretty starving by then and the soup tasted so good! She also made us homemade brownies. It was so appreciated and tasted better than any fast food that we'd have gotten.

After a visit to the restroom and some pain meds, Rachel has fallen back asleep and appears to maybe be out for the night.
The stents in Rachel's nose must stay in for the next week. She hates them and continually is asking to have them out. Right now, in addition to her sore hip (from where they took the tissue for her gum), the nasal stents appear to be the main source of discomfort for her.

In Recovery

2010-11-17T16:08:00.001-08:00

Shortly after 1:30 we got the page that surgery was winding down and Rachel was continuing to do well. It was minutes later that we got the page to have the surgery hostess call the surgical unit.

Surgery was done (lasting a little over 2 1/2 hours).

Steven talked to Dr. Martin, Rachel's plastic surgeon, and all went well with surgery.

They took tissue from her left hip and the grafting went well. Once in there, he discovered a hole in her hard palate right behind her aveolar ridge (the gum) and he fixed that. The nose revision also went well. They said it would be another hour or so before we could see her in recovery.

When the call came that one of us could go to recovery, I went.She's doing good. Wasn't complaining of any pain. Was taking water. Talking a little. The recovery nurse pulled a DVD player over and she had a movie she was watching bedside.

After a while, she asked for her Daddy, so we paged him and him and I switched. I am now in the lobby with our family, and Steven is with Rachel in recovery, we are waiting for a bed to open up on a unit and then she'll be moved to a room where then Gramma and Papa and Uncle Robbie and Auntie will be able to go and see her.

Before Surgery

2010-11-17T13:25:00.000-08:00

Our arrival time to the hospital was 9:45 with a scheduled surgery start time of 11:45. Upon arriving, the previous surgery went quicker than expected and they were ready for Rachel. Things moved rather quickly than we expected. They got her into a gown, took her vitals, and gave her a dose of versed and tylenol to help her forget anything she was about to encounter until they got her under general anesthesia. The nurses issued her new teddy bear an ID bracelet and even said she could take her bear with her to surgery! She was happy about that.

By 10:30, they were wheeling her off to surgery. Just a few tears shed on Mom's part when saying goodbye, but by then Rachel was pretty much glazed over from the Versed. Steven and I came down to the lobby and checked in with the information desk where they issue you a pager that texts you with updates straight from the Scrub Nurse.

The first update came at 11:02 stating that surgery had officially started and Rachel was doing well. The next update came at noon saying things are moving along as expected and Rachel was continuing to do well. That was our last update.

Thank you to everyone who is praying and thinking of us. We can feel your prayers and they are much appreciated.

Surgery Time

2010-11-16T13:13:00.001-08:00

I just called the surgery scheduler to get the time for surgery tomorrow.

Rachel's surgery is scheduled for 11:45am. We'll need to be there at 9:45 am.
****************************** Rachel's in good spirits today. Talking excessively, not sure if it's more than usual and it's just underlying nerves making her talk so much or if it's me just being overly sensitive to how much she's chattering. LOL.

We got groceries this morning and she was very helpful in picking out a few things she'd like to have once we're home and the recovery process has started.

And she has a friend coming over this evening to visit and bring her a little something and she's excited about that as well.

Guest Book

2010-11-15T16:50:00.000-08:00

We would love to know that you've stopped by to see Rachel and how she's doing on this journey.

Please take just a minute to sign her guestbook so we know you were here! Click on the "POST" option, once you arrive to the guestbook.

Pre-Op Appointments

2010-11-15T15:19:00.000-08:00

Rachel had two pre-op appointments today.

The first one was 8:00 with Dr. Martin's resident. She went over the procedure, over all the risks and benefits, had me sign the consents, and answered my long list of questions. She also took a listen to Rachel's lungs and heart along with the other basic vitals and snapped a before picture of Rachel for her chart. The resident was extremely friendly, reassuring, and showed compassion when after I welled up in tears she reached her hand out to mine and even had tears of her own welled up. She was a mother of young children and could identity with being a mother and that personal touch made MY morning. While she's not sure if she'll be the resident assigned to the surgery on Wednesday morning, she assured me we would see her the morning after surgery.

We saw Dr. Martin in the hall and he said he'd see us Wednesday. I made it a point to tell Rachel that he was Dr. Martin and he'd be the one fixing her nose and inside her mouth.

Next appointment was the "Pre-Anestheisia Consultation and Education" appointment where we basically did all the pre-admission stuff. My Mom went with us to these appointments this morning and I'm so thankful she did, she kept Rachel busy while I filled out numerous amounts of paperwork, and was the second set of ears to hear anything and everything everybody had to say. Thanks Mom!! :) After meeting with the 'financial planner', Rachel was taken back to an exam room where she was once again weighed (53lbs), measured (46.2 inches), as well as her blood pressure and pulse ox was taken.We then met with the nurse practitioner for the anesthesiologist department where we went over medical history, concerns about anesthesia, etc. It was at this time that she informed me Rachel needed a finger stick to check her iron level. I told Rachel what they were going to do, she looked away, and never even batted an eye. She said it hurt only after she'd received her super cool bandaid. So Rachel is all set to go. I'll need to call the hospital tomorrow afternoon to get a surgery time. But other than that, she's ready to go!

Rachel's Journey Awarded Top Cleft Blog!!

2010-11-13T19:43:00.000-08:00

As I was checking in on Miss Emily, the very first blog I found that told the story of a baby born with a cleft lip, one of the recent posts that her Mom, Jackie, had written was about how Cleft Stories had been named a Top Cleft Lip Blog and gave a link to the list of other winners and Rachel's Journey was one of them!!!My goal in keeping this blog has always been to be a source of information for other families out there that have a cleft affected child in their life. When I first came across Jackie's blog, and the early days of Emily, it was a great source of comfort to know we weren't the only ones walking this path and it helped to have an idea of the things that lay ahead for Rachel. I've always wanted to be that for other people who found themselves wearing the same shoes, that of a parent of a baby who had been born with a cleft.

I am honored to have received this award! Thank You!

Telling Rachel About Surgery

2010-11-12T07:36:00.000-08:00

The last time Rachel had any surgery was October 2007, when she had tubes placed in her ears. She was three years old at the time, the procedure was brief, and we were in and out of the hospital in a matter of a couple of hours.

The last time Rachel had major surgery was November 2005, when she had her palate repair (you can read all those posts by clicking on 'palate repair' in the side bar). She was 14 1/2 months old and the expected one over night stay in the hospital turned into two when her tongue had become clamped down during surgery and swelled up and wouldn't fit back in her mouth.

Things are different now. Rachel is six years old. She's well aware of things going on, what she's afraid of, etc. The girl won't even step foot in one direction towards Pirates of the Caribbean because she's afraid of the drops on the ride. So we've been pretty careful with what we've been telling Rachel about next week's pending 'adventure'.

Our wonderful speech therapist recommended to us a few months back that we present this all to her as an 'adventure'. It's the next step in her journey and as stressful and emotional as the entire situation is for us as her parents, on her grandparents, and even her sister, we cannot let Rachel see that or she'll become scared.

A few weeks back, when we were talking about our then upcoming break from school for a few weeks, we told Rachel she would be going on an adventure to the hospital where Dr. Martin, her plastic surgeon, would be fixing her nose. She has an extra flap of skin in her nose that is constantly bugging her and we knew she'd be interested in the fact of getting it fixed. We told her that she and Mommy would get to spend the night in the hospital and Mommy and Daddy and her would get to watch movies on the iPad and the laptop, etc, etc, all the while in this really cool hospital bed.

Rachel mentioned it to my parents a week or so ago, and my Mom told Rachel she had presents for her adventure and that has Rachel excited! Poor Kid, she had no idea as to what extreme she has to go to for these presents. LOL.

So we keep talking about her upcoming adventure. Each week adding a little bit more information - her leg might be sore and she'll be taking a break from Tae Kwon Do, and she'll have to sit out during PE at school, etc. And why her leg might be sore, etc.

So far, she's in good spirits about the whole thing, and really why wouldn't she be?? There's no need to tell her all the gory details and scare her. We just keep telling her the basics of what she needs to know.

Perfect Attendance Assembly

2010-11-10T12:13:00.000-08:00

Last Spring, our school started a new thing to promote good attendance. At the end of each trimester, the kids who've had perfect attendance that trimester are recognized at an assembly, where they get a certificate, and are entered into a raffle for the chance of gift cards or even a brand new bike for the lower primary grades. Last March, Rachel won the grand prize for Kindergarten and won a bike! It was the first trimester we'd started this promotion!

This morning we held our perfect attendance assembly for the first trimester of the school year. Both our girls were participants!

The time came for the drawing for the 1st grade bike, and low and behold, whose name did they call??? Rachel's!!! Rachel won another bike!!! The bike she won last Spring is still hanging up in the garage because it's too big for her. The bike she won is smaller than what she has now, so I knew I would have to try and return it.A lot of the teachers and even the school principal made comments to me while I wheeled the bike out to the car... "How many bikes does Rachel need??!?" or "You going to open up a bike store??" LOL. It was pretty funny that she won another bike.

After school, we went to Walmart to see about returning it for store credit and they obliged! We got a store credit for $65.00!! So it was off to the electronics department we went where Rachel picked out two new DSi games and even a cute outfit in the girls department on the way out! She was very happy with her purchases and very proud of her accomplishment of perfect attendance!

Surgery's a Comin'

2010-11-10T06:37:00.000-08:00

For six years we've been saying...
"when she's between the ages of six and eight."

And then for the last three months we've been saying...
"in three months, when we go off track from school."

And today, we are at the point of saying...
"one week from today."

One Smart Cupcake

2010-11-04T20:37:00.000-07:00

Today was Rachel's Parent Conference. It was a "student led conference" whereas we brought Rachel with us and she had to lead us through activities on six tables showing us skill in each of her subjects of schooling. The final table we visited was with her teacher, Mrs. Thompson, where we were given her report card and went over it along with talking about any concerns or questions we had.

Rachel earned 3 A's (advanced), 1 P (proficient), and 1 B (Basic - aka normal). Overall an excellent, excellent report card.

Her B was in reading where she's been having difficulty in her reading comprehension. Something we already knew she was struggling with. We'll keep working on it and hopefully we can raise that grade come next report card time. But for the time being, she's one smart cupcake and has adjusted to 1st grade very nicely and is doing well overall!

Student of the Month

2010-10-28T11:37:00.000-07:00

Rachel came home from school on Monday with the great news that she's Student of the Month! This morning was the assembly where she was presented her special folder filled with certificates and freebies inside. And during her lunch this morning she'll get pizza! She was so excited for today that she was up BEFORE 6:00am. She came into our room (cause we were still sleeping) and crawled into our bed. I touched her leg and she was already dressed! Had her bed made!! And even had her shoes on, but took them off to crawl into our bed. LOL. One things for sure, she'll be ready for bed tonight!

First School Project

2010-10-18T21:49:00.000-07:00

Rachel came how about two weeks ago with her first big project of her school career!

In Science, they've been studying animals. So Rachel needed to choose an animal, fill out a sheet with a few questions and then do a diorama. Rachel came home so very excited about the project that she asked for days to start it! Rachel chose the Panda. She's always had a love for Pandas, so it was fitting that she chose to do her project on this particular animal. The project is due tomorrow.

A Trip to the Pumpkin Patch

2010-10-18T20:51:00.000-07:00

It's that time of year again, the time of year where we enjoy going to the pumpkin patch to look at the pumpkins, take part in the petting zoo, and take pictures with the pumpkins as my backdrop! This last weekend, we went to a different Pumpkin Patch than we've gone to in years past. This one was about an hours drive, but was well worth it! We loaded up a van of Mommies and daughters and we were off to Bates Nut Farm.

We had a great time exploring, looking at all the pumpkins that were in all shapes, sizes, and colors. The sun peeked through for a while when we were exploring the patch of pumpkins, which helped for some pretty pictures. The girls took a tractor pulled hay ride and had fun exploring the straw maze, which kept them busy for about an hour! They also came home with a nice sized pumpkin! One of things I liked about this particular place was that it offered a 'pumpkin package' that included all three of those things for a pretty good price. It was a great day! And we had fun with our friends and enjoyed exploring some place new!

One Month

2010-10-17T21:50:00.000-07:00

Today is October 17th. One month from today is Rachel's surgery.

One Month.

As I was thinking about the date and how surgery is only one month away this morning during worship at church, I couldn't help but have tears rise to the surface.

I know she'll be fine. I know the Lord will have His hand on her and all those who operate on her, the nurses, etc, etc. And I know our family and friends will cover her and us in prayers, but I can't get past how hard it's going to be to turn her over to the surgical nurse and watch her be rolled or walked away to surgery.

I think that's the hardest part of it all. The pre-op appointment is no sweat. The sitting through surgery I'm good. Even through the initial hours following surgery, I'm good. And the days of recovery, I'm good. It's the handing over of my child to a nurse and watching her be taken to surgery that I'm a mess. And Rachel can't see me that way, or she'll become scared or worried, or even upset herself.

Even writing this post, I'm in tears.

The single most hardest thing I have ever had to do as a mother is to watch my babies be whisked away to surgery. Both of my girls. Hannah had one surgery when she was four months old, and this will be Rachel's 5th.

Please be praying for me. Praying for strength to get through that time of driving to the hospital, checking in, helping her into her hospital gown, and ultimately standing there watching as Rachel is taken from us. If I can just get through all of that, I know I can make it the rest of the way...

School Walk-A-Thon

2010-09-30T15:02:00.001-07:00

Our school put on a Walk-A-Thon yesterday in hopes of it being our big fundraiser for the school year, rather than do a catalog fundraiser of cheesy stuff. The participation level was high, but as far as the fund raising portion of the event, now we wait for the monies and pledges to start rolling in.Rachel walked a smaller walking track that was designed for the Kindergarteners, the 1st graders, and the 2nd graders. There was A LOT of participation on this level. And a lot of parents and grandparents who came to watch and/or walk along side their walking student. Gramma came and cheered on her girls.

A lot of the teachers participated as well, sporting their tennis shoes and wearing the school colors and school shirt, they walked beside their kids, that is until they were ditched and left in the dust, like Rachel's teacher, Mrs. Thompson. Rachel absolutely LOVED the walk-a-thon. She walked 23 laps around her level of track and when it was all done and over, asked if we could do it again soon. Yea, not anytime soon, okay Rachel?!?! LOL. Rachel celebrated the ending of the Walk-a-Thon by getting s a sno cone. That combined with the cotton candy she'd gotten earlier made for one great sugar high!Thank You Papa and Gramma and Papa Steve for pledging and supporting Rachel and our school in the walk-a-thon!

Meet Sean

2010-09-23T17:36:00.000-07:00

This is Sean. Isn't he the cutest?? Tomorrow, Friday, September 24, he will be having his very first surgery, a lip repair. His surgery will take place at 2:30am PST (it'll be 5:30am his time).

I'm asking all of Rachel's prayer warriors to please be praying for his Mom and Dad, Jessica and Samuel. And for all the doctors and nurses that will have contact with him over the next few days. And please be praying for some restful sleep for Jessica tonight. She's anxious and emotional, something I can sure relate to!

Edited to Add: Friday morning.: Sean is out of surgery. All went well. Thank You to all who prayed! But keep praying, it's now recovery time!

Lost a Tooth at School!

2010-09-17T20:14:00.000-07:00

This was the cute little face I was greeted by today after school. Rachel was so excited to have lost her other loose tooth, and to have lost it at school which earned her this little case shaped like a tooth and the substitute teacher taped string around it for a necklace. Her smile has definitely changed in the last month!

A Divine Work Day

2010-09-16T18:46:00.000-07:00

There's been a few times over the years where we've met people out in public who had children with clefts. There was the one time when Rachel was just a baby, and this couple had followed us all over Lowe's Hardware store and finally approached us. Turns out their son noticed Rachel's lip being taped and he'd had a cleft, repaired by Rachel's then plastic surgeon. We walked away that day knowing meeting that couple was no accident. It was indeed a divine meeting.

Today, was another divine appointment.

I recently took a part time job, working in my profession as a nurse. I'm currently working different locations providing flu shots to the general public. Today, I was at a grocery store, about thirty miles away from home. I obtained the shift last night by accident, not realizing it was for today's date. But as my morning progressed, and I met the second nurse for our clinic, I knew today's shift was no accident. It was another one of the Lord's divine meetings.

Around noon, when the other nurse arrived and introduced herself to me, before she even sat down, I recognized something familiar about her face.

I was 99.9% sure she had been born with a cleft lip. I couldn't help but stare at her. I had to ask, but how do you ask? So we chatted, she asked if I was a new nurse, I explained I was a nurse coming out of Stay at Home retirement for the season. LOL. She told me she was a new grad, having worked a few months in home health before she quit and had to have surgery because she'd been born with a cleft lip and palate. And there it was...the door was WIDE open for conversation. I told her I had wondered if she had been, simply because my daughter had been born with a cleft. And I was familiar with clefts and repairs, etc.

I was overcome with emotion. I tried to hold it together, but there was no accident in me getting this shift today. The Lord knew I'd be paired up with this nurse. He knew I needed to meet her and see her and how far she's come. To ask her questions. HE KNEW!! And I KNOW it was Him who orchestrated me getting this shift today. And I'm so thankful.

I asked her if she cared if I asked her questions in regards to her cleft and all her surgeries, and she said "No, she'd love to answer any questions".

She was twenty five years old and has had at least nine surgeries regarding her cleft. She said she'd had so many she really couldn't remember how many, but she was pretty sure it was nine.

She had the surgery that Rachel will have in two months when she was twelve. She's never received any speech therapy, and there were some things she said that I could tell she'd had no speech. It promoted me to write an email to our speech therapist once again thanking her for all her work with Rachel.

When my shift ended, I sincerely thanked her for answering my questions. And as I got on the freeway for my journey home, I prayed and thanked the Lord for opening the door to today's shift and for my nurse co-worker.

Definitely another Divine Appointment. Thank You Lord!

Rachel's School Picture

2010-09-07T11:55:00.000-07:00

1st Grade ~ 2010/2011

Rachel's 6th Birthday

2010-08-31T21:12:00.000-07:00

It's hard to believe that our baby is now 6 years old! Technically old enough to be out of her booster seat here in the State of California.

Rachel doesn't have any problem with popping out of bed and getting her day started. I only pray this continues through the years. LOL. She was up and dressed, had her bed made and was ready to go to school in a timely fashion so that she could open up her birthday presents from Mommy and Daddy and from Uncle Ed and Aunt Kim and her cousins who live in Oregon. She got her very own scooter from Mommy and Daddy. Pink of course. She thought it was special that we let her ride it on the kitchen floor! Check out those shoes she's wearing - groovy, huh? Those are called Twinkle Toes and they are the latest and greatest hit from Sketchers. Two families of friends went in on them and gave them to Rachel for her birthday, she absolutely LOVES them!!

Now that Rachel stays at school for lunch, I was able to bring her lunch for her special day! Her choice was a Happy Meal from McDonalds! Papa is on vacation this week, so he and Gramma surprised Rachel and showed up to have lunch with her on her special day as well. To finish off her special day, we ordered a pizza and had a coffee table picnic. We ate pizza, watched an episode of Dr. Quinn Medicine Woman, and she opened up a few packages that came in the mail today.She had a great birthday! This is the first time that Rachel's birthday has fallen on the day of the week that she was born!

Senior Orange Belt

2010-08-30T23:56:00.000-07:00

Rachel continues to go to Tae Kwon Do with Daddy and Hannah and tonight was belt ceremony. She's been promoted to Senior Orange Belt!

"Come Clown Around With Rachel"

2010-08-29T23:03:00.000-07:00

"...in celebration of her 6th birthday!"

That's how the invitations read, and that's what happened here at our house today! We had a clown themed birthday party for Rachel. It was very simple - just a few afternoon snacks, cupcakes, and ice cream. And lots and lots of silly kids running about.

The invitations also read to come dressed up in your best clown attire (oversized shirts, pants, big shoes, etc). For the last few years, my Mom and I have been wanting to make Rachel a clown costume, and this was the perfect opportunity! After a trip to Joanne's, we found the perfect material, and after almost two days straight, my Mom sewed and put together Rachel's costume!!! She even made her a matching little bag to take with us trunk or treating this year!My nieces came dressed in their best clown attire, they came dressed as Rodeo Clowns! Having slept in pink spongy rollers, their hair was absolutely adorable, and their costumes were priceless, complete with yellow rope suspenders and my brothers shoes!I had a few games planned, very simple, inexpensive, yet fun. First up was the balancing beam, because every clown should know how to balance! And they should be able to balance holding an umbrella and wearing oversized glasses. This was so much fun to watch the kids do, especially those wearing their Daddy's shoes!This game was short and sweet, maybe too short. LOL. But it was simple. I divided up the kids into two teams and they had to toss the colored ball in to the bucket. I had a third game planned, but truth be told, the kids all seemed like they would rather just play in the backyard. Which was totally fine with me. This last week, we've been experiencing an extreme heat wave and today was in the mid 80s (it literally had cooled down about 30 degrees since the beginning of the week), so it was nice to be outside and enjoying the beautiful day the Lord had blessed us with.

What party isn't a party without cupcakes and ice cream?!?! All the little clowns enjoyed the cupcakes and ice cream and following that, it was Rachel's favorite time of the party - opening presents!She received a lot of nice things, including Mario Kart for her DSi, Twinkle Toes shoes, a beautiful craft box filled with craft stuff, a Tinkerbell Tea Set, Toys R Us gift card, hard cold cash, and even a football! She definitely had a great day and we're so very thankful to our friends and family who came to help celebrate Rachel's birthday with us!

Dentist Appointment

2010-08-25T22:00:00.000-07:00

Rachel saw the dentist today and everything checked out just perfectly! No cavities!!! Yippeee! She did just fine through the cleaning and even survived the nasty fluoride treatment. We also got the x-rays needed of Rachel's mouth in preparation for her surgery in November.

Rachel's Story

2010-08-18T06:02:00.000-07:00

I've recently become active on a Facebook page for families of cleft affected children. Every day, a new 'story' is shared about the life of one of the children represented on the board. This is Rachel's story...

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Because of my history of going past my due date and delivering such a large baby with my first pregnancy. An ultrasound was done and showed the baby already between 9-11 lbs, with ten days left until my due date. Therefore I was scheduled to be induced the next day, August 31, 2004.

I was admitted, hooked up to pitocin, and after ten hours of labor, and no progressing, my OB decided it was in my best interest, and the best interest of my baby, to do a c-section. Within two and a half hours, I was prepped and in the OR.

After all the tugging and pulling, I'll never forget the words, and how my OB said them, to the team of nurses, the anesthesiologist, and others in the room. "We have a baby girl with a cleft lip, complete, with cleft palate". Being a nurse myself, I knew what it meant. It meant I had just delivered a baby with a birth defect that had gone undetected. After cleaning her up a little bit, they brought her over to show me. And staring back at me, was this dark haired baby with a wide gapping hole just below her nose. Because they weren't sure if she had anything else wrong with her, they handed her to my husband, and then whisked him and her off to the nursery to check her over. I was left there in the OR all by myself (well, my OB was stitching me up and the nurses were there) to think and dwell on the fact that I had just delivered a baby with a birth defect and of the long journey that laid ahead.

The days following Rachel's birth were extremely hard.For nine months we'd prayed for a healthy baby with all it's toes and fingers, etc. Why did the Lord choose to allow this to happen to our baby? Rachel was indeed born healthy, with all her fingers and toes, she had no other health issues, or disorders, sometimes associated with cleft affected babies. He did answer our prayers. But allowed Rachel to be born with a birth defect so that we ultimately could give HIM all the Glory for all He would do in Rachel's life, through her journey that laid ahead.

We didn't know anybody who'd had experience with a cleft. Nor did anyone at the hospital. We had visitors bringing us stacks and stacks of information they'd printed out from the internet. We really had no idea what was in store for Rachel.

We ended up at Loma Linda University Children's Hospital, which is where Rachel's craniofacial team is.

Rachel's cleft lip was very wide. She had her first surgery when she was just 5 weeks old, a lip adhesion surgery. It was the first step to fixing her lip. The idea was that the two sides of her lip would be stitched together to cause that skin and muscle to stretch, and as a result, it would be good and ready for the time in which a formal lip repair would be done. Over the course of the week following surgery, we sadly watched the stitches come undone. The surgery had been unsuccessful.The formal lip repair came when Rachel was 5 months old. The Plastic Surgeon was able to do the lip repair in just one surgery because Steven and I were diligent to keep her lip taped for months leading up to the surgery. The idea behind the taping was that the two sides of her lip - the muscles, would stretch and surgery could be done in one. We changed the tape every day and were faithful to keep doing it. Upon seeing Rachel for the first time in the recovery room, with her new smile, my husband and I were moved to tears. She looked amazing. The plastic surgeon did a wonderful, impeccable job at stitching two pieces of her lip together just so. She stayed in the hospital one night and had no complications. In the weeks following her lip repair, she just looked better and better. But it's amazing how you do kind of miss that 'wide smile' once it's gone. It was the face that I'd fallen in love with. Just three weeks after her lip repair.
Rachel's palate repair, and tubes in her ears, happened when Rachel was about 14 months old. A little later than we would have liked, but her plastic surgeon left Loma Linda, and the new one was waiting for his California medical license to take effect. The palate repair went smoothly. However, she did suffer one complication. During surgery, her tongue became clamped down, and once released at the end of hours of surgery, it swelled. Swelled to the point her little tongue would not fit back in her mouth. Thankfully her air way stayed clear, and once given several doses of steroids, and after two nights in the hospital, we were discharged.In the Spring of 2006, Rachel began speech therapy at the young age of 18 months. She continued with speech therapy for over a year, first doing therapy once a week, and then eventually stretching to once a month.

In October 2007, Rachel had tubes placed in her ears again.Early this summer, Rachel started receiving aggressive speech therapy. And we are extremely happy to report that after only ten sessions, she is making great improvement and progressing quicker than our therapist ever dreamed.

Rachel's Journey has been rather quiet the last few years. But with a recent trip to her plastic surgeon, we have learned that we are in the next phase of Rachel's Journey.

We knew the next major surgery would be when Rachel was between the ages of six and eight, the bone graft surgery to repair the cleft in her alveolar ridge. Well, Rachel will be six at the end of this month and we are at the next phase. On November 17th, Rachel will be admitted to the hospital and will have her bone graft done, as well as her first nose revision. It's exciting. It's nerve wracking. It's a lot to think about. Like I said earlier in telling Rachel's story, I believe the Lord gave us Rachel and her birth defect so that we could be a light to all those we come in contact with through this journey. Telling people of His goodness and faithfulness through it all. I know without a shadow of a doubt that the Lord will guide and direct her plastic surgeon's hands when doing the bone graft and nose revision in a few short months. I know He'll get us through the recovery process. And I know that in the end, after stitches have dissolved, after wounds have healed, and bruises diminished, we once again can give HIM all the glory for having gotten us through yet another surgery....

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When Rachel was born, after the inspiration of another cleft affected Mommy, I began this blog about Rachel and her journey. It was a place to keep friends and family up to date on the latest surgery news, progress, and pictures. And through the years, because of this blog, I've met many a wonderful people online who are walking the same journey. I've always counted it a privilege to be available to answer questions, offer encouragement, or suggestions when it comes to anything we've already experienced. If I can be that to any of you who may read this, please don't hesitate to contact me.

Picture Day at School

2010-08-16T13:10:00.000-07:00

Today was picture day at school for the lower grades. And last night, it hit me that the picture that is taken today of Rachel, will be her last school picture with her current nose. By the time Spring Pictures comes around in February/March, any bruising, or swelling from November's surgery will be long gone and Rachel will have a new nose! Definitely a milestone out of the ordinary.

Last night at bedtime, and this morning at breakfast, knowing today was picture day, she prayed to Jesus to help her have a pretty smile for the camera.

She prayed that with such a pure heart, she just wants her 1st grade picture to be perfect.

And yet, Jesus has already given her a pretty smile, He's given her two smiles actually - the first one was a wide smile, through her cleft lip, and the second smile, is as we know it now - having been repaired at the work of a wonderful plastic surgeon.

Off to a Great Start

2010-08-13T19:20:00.000-07:00

Today marks the second full week that the girls have been back in school and so far, we are off to a GREAT start.

Rachel is loving being in 1st grade. She loves staying all day, loves staying for lunch, loves her teacher (and so do I...I wrote about her on my blog), and is adjusting well.

Today, she came home with her green folder of graded papers and she's doing VERY well academically. It's kinda weird to see graded papers coming home with percentages instead of 'stars' and 'happy faces'. LOL.

Rachel continues to get up every morning in good spirits and most mornings, if her clothes are laid out the night before, is dressed and has her bed made without having to be told. She's motivated to get to school and get learning. Going every day, all day, she is definitely not giving us any complaints when told it's bedtime!

I'm still trying to figure out how much to pack in her lunch. I'm finding that she's only eating half of her sandwich and that's it. I talked to a friend who's a Noon Duty and she said for the first month or two of 1st grade, the kids are so excited about hurrying up and getting out on the big playground that they don't have time to each all the food their Mom's pack. LOL. Makes sense. But the girl comes home HUNGRY! I tried explaining to her this week that if she wants to continue getting 100% on her Math, then she needs to feed her brain, and you do that by eating your lunch.

It's amazing to think we've already been back two weeks already, but I'm happy to report we're adjusting well, and Rachel's 1st grade year is off to a great start.

Bone Grafting the Cleft Maxilla

2010-08-08T13:03:00.001-07:00

Here's a brief description of Rachel's next surgery Bone Grafting the cleft Maxilla.

Appointment with the Plastic Surgeon

2010-08-02T21:14:00.000-07:00

It's been over four and a half years since we've seen Rachel's plastic surgeon. The last time we saw him was at Rachel's post op appointment following her palate repair in November 2005.The plastic surgeon that we've seen the last few years at our annual craniofacial appointments has been one of the other plastic surgeons.

For years, we've been saying Rachel's next major surgery will be when she's between the ages of six and eight years old for a bone graft to repair the cleft in her alveolar ridge. And well, we're at that point of officially discussing the next surgical phase of this journey. Rachel will be six years old at the end of the month.

After talking about the affects of her cleft gum on her speech with Dr. D'Antonio, and another concern we have in regards to her nose, we made an appointment and this afternoon, was our appointment.

Because we keep in contact with Joy, Aiden's Mommy, who also has the same doctors as Rachel, we anticipated a very long wait in the waiting room. Joy has waited for appointments for up to three hours just in the waiting room, not even being placed into an exam room, well after the business day hours have come to a close. Therefore we came well equipped - the laptop, our iPad, snacks, and Rachel's homework! It worked out perfectly and helped pass the time now that WiFi is offered within the clinics. I was entertained on the laptop, while Steven and Rachel watched a movie on the iPad. The almost 2 hours of waiting in the waiting room, waiting to be placed in an exam room were almost bearable thanks to the diversion of modern day technology!

There were four things we had on our list to discuss with Dr. Martin.

1) For months we've noticed this odor. For the longest time, we thought it was Rachel's hands and the constant putting of them in her mouth, dried saliva, etc. But the smell was noticeable even after her baths and being clean, etc. Steven came to the conclusion in the recent mont or two that the smell was coming from her nose. She has an extra flap of skin in one of her nostrils, so who knows what could be going on in there.

Dr Martin thought it could be a number of things.

Cleft children sometimes will have extra teeth up in their gums, going undetected, hard to brush, etc, therefore will decay, rot, and smell.

But after looking at Rachel's nose and seeing the flap of skin in her one nostril, he thought it was highly possible for stuff to just collect there and that's what could be smelling.

2) The bone graft to the aveolar ridge. We've always been told this happens when her permanent teeth start to appear, etc. We've also been told recently that Dr. Martin is doing this type of surgery earlier. And after talking to him, he thinks Rachel is a great candidate for having a bone graft surgery to her alveolar ridge now.

3) The relationship between her upper jaw and her lower jaw is affecting her speech in some areas of pronunciation and articulation and we were wondering if at what point that might be fixed. Because the face doesn't fully stop growing in girls until they are 16-17 years of age, there will be no work done on moving her jaw until then. Dr. Martin thinks her disproportion is minimal and we can wait until she's in her late teens to fix that. We will need to just follow up year year and monitor her growth, etc.

4) Nasal touch up, aka, nose job. Some people don't notice Rachel's lopsided, flat on one side nose. It's not all that noticeable to those she is frequent contact with. It's part of her. It's part of what makes her so cute, in my loving mother's opinion. But the harsh reality is, her nose is lopsided and flat and needs a lift.

When we brought this to the attention of the plastic surgeon at our annual craniofacial team appointment in January, the plastic surgeon we saw had a differing opinion on doing a nose job now. She thought it best to wait.

Dr. Martin's idea is different. His view is that Rachel is at an age where socially, she could start to be made fun of, etc. And thus, he agreed, that a nose lift is in order.So what does this all mean??

It means that we most definitely are at the next phase of Rachel's journey.

Dr. Martin will do a nose job (lift it and make it perky), and he will repair the cleft in her alveolar ridge. He will fix that cleft in her gum by taking a piece of the soft tissue in her hip bone and implanting it into her alveolar ridge. After agreeing that this is the step we want to take, we were directed to the surgery schedulers office and we scheduled surgery!

Rachel will be admitted and have her surgery on Wednesday, November 17th. She will need to stay one night in the hospital, assuming there are no complications, etc.

We scheduled it on this date, as the girls will be on Thanksgiving break and will be out of school for two weeks. Dr Martin says Rachel will be just fine to return to school the week following Thanksgiving assuming she's feeling good, etc.

It feels good to know what's next. Feels good to know we'll be getting it done sooner than later. And yet, it feels like "here we go".

What about all the unknowns-like how will she react to being in the hospital? How will she do recovery wise? Pain tolerance wise? What will her nose look like??

Rachel was just 15 months old the last time she had major surgery. She was just a baby. She's a little person now. How will she take all this?

Two things are for sure: I know we don't have to worry. I have faith in our Lord that He'll carry Rachel, and us, through all of it. We have our loving family and friends and church family who will be praying for her and her doctors, and secondly, that little girl will probably get lots of lovin' from all the above during those couple of weeks of recovery!

First Day of 1st Grade

2010-07-29T10:36:00.000-07:00

This is it, our baby is officially a 1st grader and is in school all day just like her sister! Rachel was very excited for today. She up and dressed and totally ready for school by 6:45am. We had requested her teacher and were pleased to discover yesterday that our request had been granted. She's got a lot of kids in her class that she knows and looks like it'll be a great school year!School gets out at 2:15. I can't wait to hear how she enjoyed her school day and eating lunch at school and what she thinks!

Playdate at the Park

2010-07-27T13:39:00.000-07:00

This morning, we met a friend from preschool at the park for a picnic and for a few hours of playing together. Rachel's been asking for months for a playdate with Kaylee and with just a few days left of our summer vacation, we were finally able to make it happen. The girls had so much fun and enjoyed seeing each other.

Lost Tooth!

2010-07-26T20:34:00.000-07:00

Rachel lost her first tooth this afternoon! While we were out back to school shopping this afternoon, she was eating a peach and hit the pit and it loosened her tooth just the right amount where once we got home and she wiggled it and played with it, it came out! She was/is so excited to have lost her first tooth.The tooth has been cleaned and put in a baggie and tucked inside the little tooth fairy pillow and placed beneath her pillow! Daddy said the first lost tooth was deserving of $5.00 and that's what's been tucked inside her pillow!

Camping at the Beach

2010-07-25T11:34:00.000-07:00

We went camping last week, the longest we've ever camped, six nights! We had such a great time with our church family. Rachel had a blast and as always, asks when we're going camping again! Here are some highlights from her week:
Sand in her sandwiches. LOL. Playing all day, into the evenings, with one of her best buds, Isaiah. Climbing trees and being told to get down...only to find another. Playing hard every day, all day, and passing out in the chair around the fire at night. A surprise midweek visit from the cousins.Playing Dominoes and Go Fish. This girl loved playing in the sand. Everyday she played in the sand, either digging, being buried, or sitting in holes the kids had dug and then filled with water. Thankfully, one of our friends who had a shower and hook ups, let me shower her in her trailer everyday. There's no other way I'd have been able to get the sand out of every crevice of her body. LOL.

Swimming at The Grand Californian

2010-07-15T22:47:00.000-07:00

We had a fun afternoon today. We were invited to join some friends at Disney's Grand Californian Hotel for swimming and lunch and cupcakes in celebration of Katie's birthday.

It was a great afternoon and Rachel LOVED the little water slide that one of the three pools had to offer. She loves her lifejacket that Katie's Mom gave to her at the beginning of our break and was ALL OVER that pool. She definitely has become quite the fish this summer vacation.

A Speech BreakThrough!!!

2010-07-14T20:41:00.001-07:00

Rachel has been receiving one on one private speech therapy now for the last 8 weeks. The therapist comes to our house once a week, and does therapy for one hour. She pours her heart and soul into planning the lessons and therapy for Rachel each week. She recently purchased a computer program that she's added to their lineup of therapy, which Rachel loves. She's made a treasure box and set up a reward system for earning treasures and stickers and really works well with Rachel.

Wednesdays is speech day. When school starts up in 2 weeks, Wednesdays will be minimum days for the girls which will still work out perfectly for Rachel and our weekly speech.

When Dr. D'Antonio first evaluated her over 8 weeks ago, we learned that Rachel's speech was worse than we originally thought. She has what's called a Phonic Awareness Disorder in addition to other speech issues. There are certain sounds in the middle of words that she simply does not hear. Her hearing is fine, it's that she doesn't hear the phonetics.

For the last few weeks, we've been working and dwelling and working hard on distinguishing between certain sounds. Tooth tapper sounds such as the 'th' sounds and lip biter sounds as in 'f' sounds, etc. We have homework and things to work with Rachel on during the week and we've been really good about it (we aren't paying the big bucks to not do our homework! LOL).

This morning, Dr. D'Antonio brought along a colleague, a speech pathologist who specializes in cleft affected children birth to three years of age. Together they did therapy and it gave Dr. D'Antonio a change to get the thoughts and opinion of another pathologist. The most exciting news is that she was BLOWN AWAY with the breakthrough that Rachel seemed to have reached this last week!!! It's like something clicked and she got EVERYTHING correct and made all the sounds perfectly the first try and was able to self correct on a few words without prompting for correction! She's even cleaned up sounds that were first documented as problem sounds in the initial evaluation without having even been worked on!

We are so excited for this breakthrough! And so very thankful the Lord brought Dr. D'Antonio into our lives to help Rachel...

Promoted to Orange Belt

2010-06-21T21:52:00.000-07:00

Rachel was promoted this evening to an Orange Belt! She's doing so well at Tae Kwon Do and was excited to get her new color belt! Hannah promoted to a 3rd degree Jr Black Belt.

Kindergarten Graduation

2010-06-15T11:30:00.000-07:00

It seems like such a short time ago that I was blogging about Hannah's Kindergarten Graduation, and now, here I am blogging about Rachel's.

Not much more to say than it was short, sweet, and to the point.

The class proceeded in with their little blue graduation hats, the teacher said a few words, Rachel got to lead the class in the Pledge of Allegiance one last time, they recited a poem, and then the certificates and report cards were passed out and then there was cookies and juice on the patio, and a lot of picture taking. Leading the class, and audience, in the Pledge of Allegiance. Receiving her Kindergarten Certificate.With her school pal and church pal, Isaiah. Our Kindergarden Graduate.One last hug from her teacher.Following the ceremony and reception on the patio, the kids were allowed to go home, their school year was officially over. And now Rachel looks forward to July 29, when she'll be a first grader, who stays at school all day, who eats lunch at school, and gets to play on the big playground!!

Kindergarten Play Day

2010-06-10T20:26:00.000-07:00

The end of the school year is near and that is evident all across the school campus, the Kindergarten playground was no exception for festivities. Today, we had a Kindergarten play day on the playground all morning long and finished up the morning with lunch together.

Four of the only five girls in Rachel's class.The kids all had so much fun. We had some water games planned, but the weather was so chilly this morning we needed to readjust our game plan. But they all had fun nonetheless. Thankfully, I threw our parachute into my bag of tricks on the way out the door this morning and the kids absolutely LOVED it! They loved trying to keep the water balloons in the air and bouncing it about the parachute. So many laughs for this game.We finished off our busy morning with hot dogs, chips, and watermelon. And because I thought it would be hot mid day, I had ice cream cups for dessert, which was still a huge hit! And the kids all enjoyed having lunch together.