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!


Saturday, September 29, 2012

Chairi I Malformation Diagnosis

When Rachel fell and hit her head the night before school started, we brought her home to monitor her, but the moment she threw up, we went straight to urgent care. Head injuries are nothing to take lightly and I knew throwing up was serious.

After some simple neurological motor skills were performed, the Pediatrician ordered a head CT Scan, to rule out any sub-cranial bleeding, or other injury as a result of where she hit her head (the back).

While the head CT scan came back negative in regards to any further injury as a result of her fall, it did come back that a brain anomaly (abnormality) was found,  specifically a Chiari Malformation could not be ruled out. We followed up with our Pediatrician the very next day and he sent us for a neurologist consult.

We saw the neurologist a few weeks later and he ordered a full set of spinal x-rays, a brain MRI, and a c-spine MRI, all to rule out any brain malformations, any spine malformations, and Spinia Bifida.

The Xrays we did immediately following Rachel's appointment. The MRI's we had to first wait for the authorizations from our insurance and then get the appointments scheduled. She had the MRIs on September 7th.

I knew what to tell Rachel in regards of what to expect for these major tests as my Mom has had the very same tests done in the last six months, both in which I accompanied her into the room for. I was so proud of Rachel, she laid perfectly still for both tests, which was about 45 minutes.

Last week, I spoke with Rachel's neurologist on the phone in regards to her results. While the MRI's were negative for Spinia Bifida, and any other issues, the MRI's did confirm Rachel has a brain malformation called Chiari Malformation.

Because this was found on 'accident', via the head CT Scan, her specific diagnosis is Chiari I Malformation. She's been asymptotic all these years and the diagnosis wouldn't have been made other than by accident, such as the CT Scan as a result of her falling on her head.

When we first learned of the possibility of the diagnosis, I contacted Rachel's speech therapist. She's very knowledgeable in a vast area of medical things, specifically anything related to clefts. She assured us that this condition is fairly common among kids who have been born with clefts. And while we were  confident that if a diagnosis was confirmed, she's been perfectly normal the last 8 years, and we knew if she did have it, it wouldn't be something to worry over. But it was comforting to know it's a diagnosis sometimes seen with those born with a cleft of some sort.

This website, Chiari I Malformation, gives a very simple, yet very helpful explanation of it.

Our Speech Therapist said the information is good to have. It's nothing that needs to be kept out on the dresser of our brains so to speak, but definitely kept in a drawer. It's important information to give to any surgeon and anesthesiologist who touches Rachel in the future. It's important information they need to know in order to position her head when intubated for any future surgeries.

We have a return appointment with the Neurologist on November 1st, just to follow up.

Thursday, September 27, 2012

Helloooo!

I've really slacked on my blogging in the last year, and I've really missed it. If you're a follower of my personal blog, A Place of My Own, I wrote yesterday that I came to the conclusion I just need to blog and not try to catch up on the things that have gone on in the last eight months since my last entry.

Our life has been busy and Rachel is now 8 years old and in the 3rd grade and has a lot going on in the last two months since school started. The night before school started, while we were at the school looking at class lists, Rachel was playing on the hand railing and slipped off and hit her head. After taking her home to keep a close eye on her, a trip to Urgent Care was made after she started throwing up. So Rachel's 1st day of school was actually the second day of school.


It's hard to believe, but Rachel turned 8 on August 31st. We had the family over for dinner and cupcakes that evening. Unfortunately, during the day we had my grandmothers funeral to go to. But the next day, we took Rachel to Legoland with our family who recently moved here from out of state. She had a blast and loved every minute of it!

There's some other things to update as far as Rachel and something that we stumbled upon by accident, but that's another whole post in itself. But for know, my hope is to get back into regular blogging!


Saturday, January 21, 2012

Chewbacca

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...

Thursday, January 19, 2012

The "I Am Hallway"

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!".