Saturday, November 13, 2021

Online Cleft Convention

Things are pretty quiet surrounding Rachel's Journey. It's hard to believe, but this last week marked 11 years since her bone graft surgery!! 

Rachel still has braces on, and see's the orthodontist every 6-8 weeks. And we are anticipating her next big surgery perhaps next summer. 

I follow a few different Cleft organizations on social media and recently came across information for a Cleft Convention. Where it was to bring together people of all sorts of ages and backgrounds who were affected by a cleft of some sort. I asked Rachel if she was interested in attending and she was! 

Today was the online Cleft Convention hosted by Smile Train. We received a box in the mail yesterday of all kinds of swag - a shirt for her and a shirt for me, a note pad, an insulated tumbler, a charging pad, stickers, a pen, and a little bag of art supplies for a project they would complete during the convention.

The convention was most of the day and it included speakers of all ages. And different sessions Rachel could attend based on the subject, etc. 

There were kids/people with all sorts of varying clefts - unilateral, bilateral, just the lip, the lip and the palate, the lip, the palate, and the alveolar ridge(which is what Rachel had). Kids with years of speech therapy, kids with more surgeries than Rachel. There was so much information! There was even a little segment on dogs who'd been born with clefts!!

This is what Rachel had to say about the convention in her own words, shared with her permission:

"My first ever Cleft Con was a huge success! I learned so much and heard so many amazing stories from cleft affected people. This virtual conference helped me find new ways to tell my story and help spread awareness of cleft lips and cleft palates. Looking forward to meeting more cleft affected people and hear their stories.
Every smile has a story!"

I'm so thankful for having found this opportunity for Rachel to attend and to learn how to help spread awareness in her own way. 

Keeping this blog for the last 17 years has been my way of spreading awareness, keeping family informed in those early years when it was a very active season in this journey. But I'm glad Rachel is finding her own voice, and her own way to share with others this journey the Lord gave to her. 

Wednesday, July 29, 2020

Back to the Orthodontist

Rachel had her second appointment this morning to finish off the starting of Phase II.

They replaced a couple of brackets and put bands on her back teeth. The wire was also put through the top braces.

Her next appointment isn't until mid October, but I have a feeling we will be back before then due to a loose bracket or poking wire. 

Tuesday, July 21, 2020

Let Phase II Begin!

Today Rachel officially began Phase II of braces. Because of the CoviD pandemic, she had to go in alone as I waited in the car.

We thought she was just getting spacers today, but when she came out to the car, she had brackets on, and wire on all the bottom teeth. This is the first time she's had bottom braces! She was already feeling the discomfort when she came to the car.

This Xray was taken last month (June 2020). If you look closely, on the top, you can see the left side, Rachel has two transposed teeth 3 & 4. They plan on leaving them. It'd be too painful to try and move those teeth around into their proper places.

This Xray was taken in 2011. Rachel was 7 years old when this Xray was taken.  A lot of growth, and 3 years of top braces. Interesting and encouraging to see how much change has been made. 

Rachel sees our dentist on Monday to take care of filling on the back of one of her teeth, and then we return to the Orthodontist next Wednesday to finish off the start up of this second set of braces. 

Wednesday, June 17, 2020

Orthodontics Phase II

When Rachel was little, and we saw the Craniofacial Team on a yearly basis, there was this timeline for all the surgeries and all the things that accompany being born with a cleft, including two phases of braces. At that time, it all seemed so far off in the future. But here we are at the beginning stage of our next leg of Rachel's Journey.

Today, we saw Rachel's Orthodontist, Dr. Garcia, for a follow up Xray from 6 months ago to determine if she'd stopped growing. We were supposed to have this appointment the beginning of May, and then follow up with Dr. Martin, but the Coronavirus Pandemic caused those appointments to be cancelled and moved out.

Because of the Pandemic, the amount of people are limited in the office, therefore I wrote out my note of concerns and questions and sent Rachel in the door to her appointment. She didn't like that one bit. Honestly, it felt strange sending her in to such an important appointment without me.

She didn't make it too far into the office before she was summoning me to come in. Apparently limiting how many people are in the office means you can still bring one parent and not both or all the siblings.

I had texted with Dr. Garcia last month when our appointment was cancelled. It happened to be that she was actually with Dr. Martin and they were able to discuss Rachel's case. And they felt she was ready to move to the next step.

So today, we began the next step - Orthodontics Phase II.  X-rays and impressions were taken, as well as photographs, financial contracts were signed, and future appointments made. 

After Rachel sees our regular dentist for a cleaning next month, we will return to Dr. Garcia's office for spacers between her teeth, and then a week later we return for braces! I'm not sure if they will do top and bottom at the same time, but eventually she'll have both.

This phase of braces will help straighten everything out, align everything, and get everything in place for her jaw correction surgery next summer.

The jaw surgery I believe will be the last "required" surgery for Rachel. Any future surgeries Rachel will have - lip revisions and nose jobs, are surgeries that are up to Rachel as to whether or not she wants them.

Monday, November 11, 2019

An Appointment with the Plastic Surgeon

We saw Rachel's Plastic Surgeon today, it'd been a little over 8 years since we'd seen him, following the multiple post op appointments following her bone graft surgery.

It was a good appointment. It didn't go the way Rachel had hoped it would, but Steven and I are both pleased with how it went.

The plan is to go back to Dr. Garcia, Rachel's orthodontist, and get a baseline Xray of her upper jaw. And then go back and get another xray in 6 months. And then see Dr Martin.

The Xrays are a more definitive way of determining if Rachel is done growing. If there's little to no change in those two Xrays, then we can move forward.

Rachel will need braces for at least 3-6 months prior to surgery. So at this point, we are looking at surgery in summer of 2021  (I mean, we could try and get it in over Christmas break next year, but do we really want to do that?!?!). Following surgery, she'll have braces on for an additional 6 month or so.

In regards to a lip revision and a nose job, Dr. Martin wouldn't do either of those until Rachel is 6 months post op from the jaw surgery. That gives everything time to settle and the swelling to disburse.

But all in all, it's a good possibility it all can be done and braces possibly off before Rachel goes off to college in Fall 2022. Which ultimately was her plan.

Wednesday, October 30, 2019

Rachel's Journey: Where Are We Now?

It's been two years since I've written anything here. Rachel's Journey has been a quiet journey the last 8 years since her Bone Graft surgery, with the exception of her having braces, and now in the last year, retainer checks.

We are thankful for the quietness. Thankful for the once every six to nine months trips to the Orthodontist. Thankful for nothing big. Thankful for nothing out of the ordinary.

When Rachel was little, we had a rough idea of what her journey looked like. Lip repair, palate repair, bone graft/aveolar ridge repair, under bite repair.

After her lip and palate repair, we knew the next big thing was her bone graft, which wouldn't come until she was 5 or 6 years old.

After her bone graft and aveolar ridge repair, we knew the next big thing was her under bite repair, which wouldn't come until she was 16 or 17. Well guess what, Rachel is now 15 years old and that girl has a plan.

It is Rachel's desire/plan to have her next big surgery the beginning of next summer (June 2020) so that she could recover over summer break, and get her second phase of braces on. And then ultimately get her braces off in time to go off to college in the Fall of 2022.

Knowing that it can sometimes take a while to get in to see doctors, I called two months ago to get an appointment with her cleft specialist orthodontist. We saw Dr. Garcia this afternoon.

As far as the next surgery, Dr. Garcia is on board. From an orthodontia standpoint, Rachel's ready. The concern is if Rachel is slowing down in her growing. They cannot do the next surgery until she's slowed down or stopped growing. And if you've watched Rachel the last year, she's been growing!

So the next step is an appointment with Rachel's plastic surgeon. He will determine if she's ready for the next surgery, or if we need to wait a while until she shows evidence of slowing down on growing.

I came straight home and called Dr. Martin's office, thinking in the back of my head we probably wouldn't get an appointment until after the first of the year, I was shocked when he had numerous afternoon openings for a week from Monday. A WEEK FROM THIS MONDAY!!!

So that's where we are at this point. We see the plastic surgeon on November 11th and then we'll go from there.

Whether Dr. Martin thinks Rachel's ready physically for the next surgery, or whether he thinks we need to wait a while longer for her growing to slow/stop, we know that no matter what, despite the fact that Rachel has a plan, this will all be done in HIS perfect timing.

Thursday, August 31, 2017

13 Years Ago...

13 years ago on this very night, I delivered our second baby girl.

An ultrasound done the day before showed that the baby was already measuring between 9-11lbs and my due date wasn’t for another 10 days! My OB didn’t want this baby getting as big as our first baby (10 lbs at 2 weeks late) so she scheduled me for an induction the very next day.

After having labored for 9+ hours, with very little progress, it was decided it was in my best interest to have a c-section. 

At 9:21pm, Rachel Marie Fraser made her grand entrance into the world. And what a grand entrance indeed. As my OB was delivering her (all 9lbs 5oz of her), it was discovered that Rachel had been born with an undetected birth defect not picked up on any ultrasounds I’d had throughout my pregnancy. 

I’ll never forget how Dr. Koch announced to the delivery team of her discovery. I’ll never forget the feeling of laying on that table knowing I’d just given birth to a child with an undetected birth defect. I’ll never forget the feeling of being left alone for them to finish stitching me up and stabilizing me while I insisted Steven accompany Rachel to the Nursery to be checked over. I’ll never forget laying in recovery, dozing in and out of a sleepy consciousness asking for information about the baby I’d just had. Just as I’m sure Steven never forget how it felt to carry our new baby down the hall, shielding her face from our eagerly awaiting family standing in the doorway of the waiting room awaiting the joyous news of a new arrival to our family. Just as he’ll probably never forget how it felt to tell our family of her birth defect.

It was close to midnight before I was wheeled into my room. Every one of our family members had left to go home except for my parents. They waited until I was in my room, to see me, to see that I was okay. I remember telling my mom we had quite a long journey ahead of us. Thus the name of this blog.

After they left, Steven crawled into bed beside me. We talked about what lay ahead of us with this new baby with a birth defect. We cried together. We wondered why after 8 months of praying for a healthy baby, that God allowed us to have a baby with a birth defect. We’d already experienced a very difficult baby hood with Hannah, in and out of the hospital with aspiration pneumonia due to a swallowing problem. THIS baby was supposed to be our easy baby. Our healthy baby. We prayed together over all that lay ahead despite our not understanding.

The days following Rachel’s birth were kinda somber ones. We were grieving for that ‘perfectly healthy baby’. We had friends bringing us stacks and stacks of information printed from the internet regarding Cleft Lips and Palates. We had social workers and case workers visit us with such little information as to when Rachel’s first surgery would be, etc, etc. We had so many questions and really no answers.

I had a friend who was a pediatric nurse at the hospital I was at. She scheduled herself to work when she’d found out Rachel’d been born with a cleft lip and palate. She was my nurse the day after Rachel was born. She took care of me. Anticipating pain meds, gave me meds that would help with some of the trapped air pain that followed c-sections and abdominal surgeries. She made sure I ate. SHE TOOK CARE OF ME. I will always appreciate that. To do this day, she holds Rachel very dear to her heart. She’s one of the few people, aside from family, that have seen how far Rachel has come in the last 13 years. 

It wasn’t too long after Rachel’s birth when we started learning about all the health problems that sometimes accompany cleft lips and cleft palates. We’d learned that God really had answered our prayers for a healthy baby. Rachel had none of the other problems that some kids have. Her problems were fixable through surgeries. 

Thirteen years later and I can tell you God has been there every step of the way. He’s guided and directed the surgeon’s hands in all of her surgeries (5 thus far directly relating to her birth defect), plus an appendectomy). He’s opened doors for an amazing Speech Pathologist and Orthodontist. And he’s given me plenty of opportunities to encourage, be supportive, and offer advice to mom’s behind us on this same journey through email, and through this blog. 

God’s got special things in mind for our Rachel. I was reminded of that today when her and I went to lunch for her birthday and she prayed for our lunch. She prayed for all the people who were without power (the city the girls go to school in were experiencing a power outage) and she prayed for protection for the firefighters we’d just seen battling a new fire started a couple miles from our home. She has a heart of compassion, she’s caring, and God’s gonna use her somehow to continue to bring Him Glory. 

So on this night, 13 years later, I’m reminiscing. I’m filled with emotion. I’m thankful that Lord always has us in His hands. Always has His plan in tact. And I’m thankful He chose us for Rachel’s parents. 

Wednesday, August 23, 2017

A New Phase for the "I Am Hallway"

In October 2011, we were contacted by a longtime friend who works in the Marketing Department at Loma Linda University Medical Center about participating in a special new project, called the "I Am Hallway". People's stories were to be shared, each having the tag line "I Am" followed by a descriptive word for their story. These stories were to be displayed in the major hallway of the Medical Center.
Rachel's tag line is "I Am Beautiful".
Rachel next to her picture, January 2012. 
That hallway debuted in January 2012, where Rachel's picture hung for a couple of years, and then was moved to another hallway to make room for the next set of stories to be shared.
The third phase of that hallway debuted recently with yet another set of stories to be told. And today, I picked up Rachel's picture from my friends office. 

I'm not quite sure where we'll put it as it is rather large. Maybe someday Rachel will want to hang it in a home office or something. But one thing I do know is that we were honored to be a part of the very first "I Am Hallway" that shared just a little glimpse into Rachel's Journey. 

* My original post on the "I Am Hallway" can be viewed here.  

Monday, August 14, 2017

Orthodontic Progress

Last month marked 3 years since Rachel started on this current Orthodontic phase. Because of the cleft in her alveolar ridge, her two front teeth were totally crocked and sideways. She was beginning to feel self conscious and even had some teasing from kids who'd not known Rachel all of their Elementary School life.

At that time, in order to start the process on turning those two teeth, she simply had two brackets. We watched those two teeth move quickly and we were left amazed at the progress. This picture shows the before and the after of the two brackets. 

Over time, she has had an entire set of top braces put on. For the last year (maybe longer) we've been waiting on this one tooth to make it's presence known. Wouldn't you know, two days after her last Orthodontist appointment, Rachel began complaining about her mouth. Sure enough that tooth was finally breaking through!! And thus our 12 year old was dealing with "teething pains". Wherever we went, I carried Motrin and Ora-gel to aid in her discomfort.

We saw Dr. Garcia on Friday. She was very excited to see that tooth had finally made an appearance and a new plan was put into motion to now bring it forward to align with the other teeth. 

The brackets that were on some of Rachel's front teeth had to come off so that new ones could be repositioned in order to put the new plan into action. This was the first time in 3 years we'd seen her teeth straight and without brackets! It brought tears to my eyes to see the difference in the before and the now.
She now has a coil from one tooth to another and and then a bracket on the new tooth tied to that coil in order to bring it forward. She had quite a bit of pain over the weekend, and thankfully stacking Motrin and Tylenol and staying on that regularly has helped.

This little mouth has come a long way in the last ::almost:: 13 years! 

Tuesday, September 06, 2016

Rachel's Journey: A Photo Scrapbook

A little less than a month ago, my cousin who is a NICU nurse at a local hospital approached me about making Rachel's story into a photo book. She told me that periodically she has babies that are born with a cleft and while they do have a photo book of a child with a cleft on the hospital unit, the book doesn't go past the first year. My cousin knew I'd kept a blog for Rachel and shared way beyond the first year of Rachel's life and knew it would be helpful for families on the same journey. 

When Rachel was born, we had no idea what having a cleft baby entailed, when the surgeries would be, or how many for that matter, we had trouble feeding her, we had a ton of questions. We had a friend who printed countless pages of information from the internet and brought them to us at the hospital. They were helpful to some degree, but we were overwhelmed. If only there had been a person who could tell us themselves how this would all work out, we would have felt so much relief.

For years I've wanted to be a resource to parents who'd given birth to a baby with a cleft. Many, many times I talked to the social worker at our Craniofacial Team appointments sharing my desire to be a resource and while the social worker thought it was a great idea, nothing ever came to fruition. So I poured myself into Rachel's Journey and through the years have met countless families over the internet who have had babies born with a cleft lip and palate. I have been able to offer tips, advice, encouragement, and have special bonds with these Moms despite having never met in person, with the exception of just two, all because we have cleft affected children.

So when my cousin approached me about making a book, I knew with all my heart it was an opportunity I didn't want to pass up.

I put together the book in a matter of a week and a half. And then I took the time to edit, fine tune my words, and to just let it sit. It was very emotional for me putting together this book. Revisiting each road block, bump, and detours of this journey has reminded me once again how the Lord has been so, so good to us throughout Rachel's Journey.

I finally sent it off to be published last week. I ordered one to give to the hospital in which my cousin works at, and I ordered one for ourselves. 

It arrived today. And I'm moved to tears all over again at seeing how far our little Rachel has come. And I could not wait to share it here on her blog for all to see!!!

The book is 26 pages. It starts with newborn pictures of Rachel, gives pictures and details about the five surgeries she's had, shares pictures and information about her need for Speech Therapy, tubes in her ears, her brain anomaly diagnosis, as well as helpful information in regards to feeding a cleft baby, arm restraints, and even information pertaining to her dental and orthodontic issues. 

Once I deliver this book to the hospital, I  have no idea who will see this book, I pray it encourages families. I hope and pray they will contact me so I can offer help and encouragement to them in person. But most importantly, I hope it opens the door to being able to share the Lord and all He's done for us on this Journey thus far!!

Friday, August 19, 2016

Hello Out There!!

It's been a while since I've blogged. 

Rachel's Journey has been quiet and really uneventful the last few years, so there's not been much to blog about in way of that. I should have been better at keeping this blog updated even Rachel's day to day adventures and adventures we've had as a family, etc. 

At any rate, I'm going to try and be better about my blogging...

Here is our beauty of a daughter. She recently started 7th grade at the middle school and will turn 12 years old in less than 2 weeks. Middle School!!! 12 Years Old!!!! :::Shaking My Head::: 

Wednesday, October 14, 2015

Blessed, Blessed, ... Blessed

We aren't watchers of Duck Dynasty. We've watched an episode or two, when it was known they'd be featuring Mia Robertson, who like Rachel, was born with a cleft lip and palate. 

But when I learned that Missy Robertson had written a book about their journey with Mia, I knew I JUST HAD to have that book. And there's nothing better than having Amazon Prime when something is first released! I couldn't wait to get my hands on this book and start reading. 

I read the book in two and a half days. 

It was a book I could hardly put down. But at the same time, I had to keep taking breaks, because as I read, I was reliving our journey with Rachel. Every anticipated surgery, every recovery, every struggle, was not only Missy and Jase's journey with Mia, but it was also OURS. It was Darcy and Steven's journey with Rachel. 

Once Mia's story came to play in Chapter 3, every emotion, every feeling, every thought that Missy expressed as a Mother, it was as though she'd been in my head. She and I could have been the same person. 

We knew that the Robertson family had strong Christian values, but I had no idea until I read this book just how true and devoted they are to loving Jesus, to living life pleasing to Him. 

This book definitely touched me in more ways than one and I recommend it to anyone who's life has been affected by a child born with a cleft.