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. 

Monday, December 15, 2014

Dental Appointment and a Tooth Pulled

Today was a scheduled, routine dental check up for both Rachel and her sister. However, Rachel ended up having a tad bit more done than just cleaning and a check up. 

At Rachel's November Orthodontist appointment, Dr. Garcia gave Rachel one month to work on loosening up a tooth. She told her to wiggle it as she sat and watched TV, etc. If it wasn't out or close to being out by the time we saw her at the next appointment, she would write our dentist a note, asking that she pull that tooth. 

No amount of wiggling was going to make that tooth come out, therefore we came with a note in hand today to have Dr. Hoffer pull the tooth. Thankfully, Dr. Hoffer had an Olaf Rachel could borrow to cuddle while her nitrous gas took effect and through the process of having that tooth pulled. 

Once the tooth was pulled, there was no doubt that ANY amount of wiggling on it would not have helped. This tooth was not coming out on its own and it HAD TO BE pulled. Check out the root on this thing!!!

As always, Rachel was a trooper and nothing that a little Motrin and a McDonalds McFlurry didn't help take care of! 

Now there is room for the tooth that was needing to come down to come down and perhaps soon, she'll have the rest of her top braces on!

Thursday, September 11, 2014

Two Months of Braces

Rachel had an orthodontist appointment today. It's been two months since she got her braces on and whoa! what a difference two months has made. This picture really doesn't do it justice, but her two top teeth have straightened out tremendously!! 


The one tooth on the left used to be almost completely sideways, and now it's almost completely straight!

It's been amazing to watch how quickly things are changing in her mouth. Needless to say, she's had quite a bit of pain and discomfort and Motrin is a friend kept close by!

Wednesday, September 10, 2014

Cleft Affected Families

There have been a lot of comments being left recently on old posts I've written through the years from Moms who have kids with cleft affected kids and have been days away from surgery, etc.

I'd love to email with you and be available to answer any questions or just offer you encouragement from a "Been There, Done That" Mama!!

My email address is:  DarcyFras < at > AOL  < dot > com.

Please feel free to email me!!

Sunday, August 31, 2014

10 Years on this Journey

Ten years ago today, our lives were forever changed. 

Forever changed in two very big ways. 

The first,  that we welcomed Baby #2 into our family and we became a family of four. 

The second, not only had we welcomed another baby, but I had given birth to a baby born with an undetected birth defect in the form of a cleft lip and cleft palate. 

And thus, ten years ago today we began this journey, Rachel's Journey. 


The days following Rachel's birth were ones filled with disbelief, shock, sadness, grief, and to be perfectly honest...we questioned the prayers we'd prayed for nine months for a healthy baby.  

You see, Hannah, our firstborn, had many health problems her first year of life, including three weeklong hospital stays, and surgery. It was a rough and stressful first year. We prayed fervently for Baby #2 to be born healthy, with all its fingers and toes and limbs. And when Rachel was born with a birth defect, we were left perplexed as to why God didn't answer that prayer request. 

But He did answer our prayers.

Rachel was born perfectly healthy

Rachel had no other syndromes or diseases that often times accompany cleft lips and cleft palates. She had all her fingers, toes, and limbs. And in all actuality, what Rachel was born with, was fixable. It took several surgeries, but it's fixed. However, it does continue to be a big part of Rachel's life, and ours, to this day...

If it weren't for her birth defect, she wouldn't have needed braces at the age of 9 1/2 years old.

If it weren't for her birth defect, she wouldn't have needed years and years of one on one speech. 

If it weren't for her birth defect, she wouldn't have more surgeries down the road. 

But more importantly...

If it weren't for her birth defect, we wouldn't be able to give God all the glory for all the prayers He has answered in the last ten years. 

If it weren't for her birth defect, we wouldn't be able to give God all the glory for how wonderful things have turned out for Rachel in the terms of having just the right doctors, and acquiring the best Speech Therapist all around. 

If it weren't for her birth defect, we wouldn't have started this blog and been able to provide information and encouragement for the families who started a similar journey to Rachel's after us. 


This journey hasn't always been easy, nor has it been one without tears.  But on this special day, Rachel's 10th birthday, we celebrate this journey...For how far the Lord has brought us and carried us, and for the road ahead, where He already knows whats ahead and what we'll need when the time comes...


"I praise you because I am fearfully and wonderfully made; 
Your works are wonderful..." 
~ Psalm 139:14

Thursday, July 10, 2014

Getting Braces On

Today, Rachel got braces. It's the beginning of a new smile for her. And while she's excited about the end results, she was nervous for this mornings appointment. 

Overall, it went well. There were some tears, both from Rachel and from Mommy. This journey is tough at times. It's hard to see your child upset. 


Her mouth was pretty sore after the appointment. I gave her a dose of Motrin before we even left the parking lot, next time I'll give her a dose before we leave home so it'll be working by the time all the adjusting takes place. Here's hoping the Motrin, and a chocolate chip frappacino from Starbucks kicks in quick!


After the Motrin and Frappacino kicked in, she was all smiles! For now, she has brackets on her front two teeth connected with a wire. She also had bands put on her back teeth that will anchor the additional brackets that will be placed later.  The immediate goal is to straighten those two teeth, and then in a few months, additional brackets will be added to the rest of the top teeth and some more straightening and room made for teeth that need to come down. 


In regards to Rachel's braces, as opposed to Hannah's braces, the progress is going to be noticeable! There's a lot of moving those two teeth have to do. We've learned through Rachel's surgeries that she has a very high tolerance for pain, so we told her if her mouth hurts, she needs to tell us so we can give her something for the pain and discomfort. 

We return to the Orthodontist in 8 weeks. 

Monday, June 30, 2014

Let the Ortho Adventure Begin

Let the Ortho Adventure Begin!

Today we visited Dr. Garcia's office to have impressions made, pictures taken, and spacers put between a few of Rachel's back teeth.


This is Rachel's smile now. Her top two teeth are completely jacked up as a result of her cleft alveolar ridge. We love her no matter what her smile looks like, but we're excited to see how her new smile at the end of this part of the journey. 



Monday, June 02, 2014

An Ortho Consult

Kids can be mean. Kids speak without thinking, truth be told, some adults do the same. We've reached the point in this journey where some kids at school have made fun of Rachel for her teeth and questioned why her teeth are the way they are. Thus, it was time for an orthodontist consult.

After a few phone calls to the office of the Orthodontist we've previously seen at Loma Linda, we  discovered Dr Garcia no longer is accepting patients at Loma Linda School of Dentistry, however, she did have a private practice. 

I called and got an appointment for today. The office is a bit of a drive, but I'm willing to drive to the ends of the earth to get the best possible care when it comes to Rachel and anything to do with her birth defect, especially since Dr. Garcia specializes in cleft children. 

After chatting a bit, and taking an Xray, Dr. Garcia turned to talk to Rachel. She asked Rachel what she would like for her to do, and Rachel broke down in tears asking Dr. G to fix her teeth. :(


And thus that is the plan. We will come back in a few weeks for spacers, and then a week later for braces. These braces will be on about 8-10 months and by the end of this Phase I, her smile will once again look completely different...


Tuesday, December 31, 2013

2013 Recap

I've fallen way behind on blogging on all my blogs in 2013. I've not blogged any of the fun stuff we've done, milestones met, or even things related to the very reason I started Rachel's Journey, which are the things related to her birth defect.

2013 has been a very quiet year in relation to things associated with Rachel's birth defect and we are thankful for that.

She's been done with Speech Therapy for almost two years, but that's not to say she's not lazy in her speech, or what we refer to as 'mush mouth'. We need to be better at enforcing her to slow down and be more clear.

In July, a day after returned home from a week of tent camping, Rachel complained of stomach pain, had a bit of a fever, and even threw up a few times. We chalked it up to a stomach bug and kept an eye on her. It all changed Monday morning when she said her right side hurt. Within an hour I had her to our Pediatrician, he sent us upstairs to a surgeon, and after ordering a CT Scan, my suspicions were confirmed, it was her appendicitis. It was 11:00 that night when she finally went in for surgery. Due to a small perforation in her appendix, she spent two nights in the hospital on IV antibiotics. While this surgery was not related to her birth defect, this was her 6th surgery!


A little more than a week after surgery, Rachel started the 4th grade! It's been a great school year thus far and we absolutely love her teacher. She's the same teacher Hannah had in the 4th grade, which is why we requested her, but Rachel's learning a lot and enjoying the out of the box teaching that her teachers does.
First Day of 4th Grade
Turning 9! 

The end of August not only marked Rachel's birthday, but it was the beginning of Soccer! This was the first Fall season that Rachel has played and she loved it! She played on an all girls team and mostly played the goalie position, which she loved! The verdict is still out if she's going to give Spring Soccer another try, but last we talked about it, she wants to take some dance lessons. 


The year also held a lot of trips to Disneyland, to the San Diego Zoo and Safari Park, bike rides as a family, and lots of other fun things. But the most important thing is that, aside from the appendectomy in July, it's been a healthy and happy year and we look forward to what 2014 holds for Rachel. It's hard to believe that 2014 is the year our baby will be 10 years old!!

Sunday, September 30, 2012

Orthodontist Consult

Children born with clefts usually require lots of orthodontia, which for Rachel, is the next leg of her journey. 

Rachel has a permanent tooth that is crooked, and we really just needed some direction for the future. So I made an appointment recently to see an orthodontist known in our area for her expertise in treating kids with clefts. 


After some X-rays, and a peek inside, the Orthodontist sat down with me and showed me Rachel's xray and penciled in what teeth she has in, waiting to come in, ones to watch, etc.

After much discussion we found it best to continue to watch a couple of teeth, and wait until she's a few years older before braces.

A set of braces prior to the next BIG surgery, which is a jaw realignment, are very important. That set of braces will straighten out all the teeth and align everything perfectly in anticipation for surgery.

Dr Garcia was a huge help, and told us not only can we check back in every summer (once a year consults are free) or as our regular dentist takes X-rays, I'm welcome to bring them in for her review so we can be ready when the time comes!