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!".

Friday, January 06, 2012

Spa Day

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!

Tuesday, January 03, 2012

The Month of December

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!

Thursday, December 01, 2011

The Month of November

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.

Friday, October 28, 2011

It's Saturday!!!!

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!!

Wednesday, October 19, 2011

Little Girl Sees Smile for the First Time

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.

Thursday, October 06, 2011

Photo Shoot

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.