Tuesday, August 31, 2010

Rachel's 6th Birthday

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!

Monday, August 30, 2010

Senior Orange Belt

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!

Sunday, August 29, 2010

"Come Clown Around With Rachel"

"...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!

Wednesday, August 25, 2010

Dentist Appointment

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.

Wednesday, August 18, 2010

Rachel's Story

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...


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....


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.

Monday, August 16, 2010

Picture Day at School

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.

Friday, August 13, 2010

Off to a Great Start

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.

Sunday, August 08, 2010

Bone Grafting the Cleft Maxilla

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

Monday, August 02, 2010

Appointment with the Plastic Surgeon

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!