Sunday, September 28, 2008

Aiden's Blog

Remember a couple of weeks ago, I posted about meeting a local family who has the same craniofacial team as Rachel and we met for lunch, etc. Aiden's mommy has started her own blog! It's a blog that not only follows Aiden's journey with cleft, but the entire family. Check it out!

Please keep Aiden and his Mommy and Daddy in your prayers, Aiden has a BIG surgery this Wednesday. He is having his cleft lip AND his cleft palate repaired at the same time, as well has having tubes put in his ears. Please be praying for the doctors and nurses and all who they come in contact with. I know they covet and welcome your prayers!

Tuesday, September 23, 2008

Sunny Sunflowers go on a "Hike"

One of the advantages of substituting at the preschool is that I get to be a part of the going ons in Rachel's classroom. Today some of the classes were scheduled for their "hikes", which are more or less nature walks to the back the church property. LOL. In the four combined years that our girls have gone to that preschool, I've never once been there the day they've done this and it was a fun adventure walking with the Sunny Sunflowers.
With her cute little sack to carry her snack and water.

Saturday, September 20, 2008

Thursday, September 18, 2008

Have You Been Following???

Have you been following Jeff and the Operation Smile Team on their mission in Paraguay?? Have you seen the smiles they've been "giving"? Here is one example:

This is Vannia, she is 9 months old and has both a cleft lip and palate.
This is before her lip repair.
This is Vannia the day after her lip repair.
The before and after pictures are amazing, aren't they? And what's even more amazing is that other smiles like hers can be fixed through Operation Smile for just $20 a month, or $240. If you'd like to give a child hope by donating a smile, visit Operation Smile.

Pictures taken from Jeff's blog

Wednesday, September 17, 2008

September is Craniofacial Acceptance Month

I just discovered that September is "Craniofacial Acceptance Month". Too bad I didn't learn that before the month was already half over! Oh well, at least there's still half a month left.

Many people may wonder just what a craniofacial disorder is...

A craniofacial disorder refers to an abnormality of the face and/or the head. Cranfioracial differences can result from abnormal growth patterns of the face or the skull, which involves soft tissue and bones. A craniofacial condition may include disfigurement brought about by birth defect (such as in Rachel's case), disease, or trauma.

Often times, with such a disorder, you come under the care of a team of doctors, a craniofacial team. This team of doctors usually consist of a pediatrician, a plastic surgeon, an orthodontist, a dentist, a speech therapist, a genetist, a social worker, and an ENT. Rachel's craniofacial team is located at Loma Linda University Children's Hospital. We see the team as a whole once a year, but sometimes see one or more of the other people more often, such as the ENT who follows her hearing, and a few years ago, we were seeing the speech therapist weekly, for months!

There are a lot of great organizations out there that help and support families of craniofacial disorders. One in which is an organization that Cher works closely with after her role in the movie Mask. That organization is The Children's Craniofacial Association.

Saturday, September 13, 2008

A Great Day at Disneyland

We went to Disneyland today. Yes, it was Rachel and mine's second trip this week, thanks to the cooler weather. Today, we went with our good friends, and then later in the day, we met up with other friends from church and school. It was a great day!

Hopping on the horse drawn cable car, there wasn't enough room for us all to sit, so Rachel, Amy, and I got to stand in the back of the car. She practiced her princess wave all the way down Main Street.We spent quite a while at the Princess Fantasy Faire, listening to stories told by the princesses, doing crafts and learning how to dance and act like princesses, and knights.
And our youngest princess, lovely isn't she?!?!
On our last visit with Amy and kids about three weeks ago, we discovered Rachel has reached the 'magical height' of being able to ride a lot of the good rides. Today we tried Soarin Over California and she loved it!!! We even managed to ride it twice today and each time she came off saying how much she liked the ride.
Spending some time in the Redwood Creek Challenge Trails on the rope bridge.
Taking time to enjoy an afternoon snack, a chocolate muffin.
Meeting up with our friends late in the afternoon provided Rachel her friends, Miles, and his sister Emma. We spent the remainder of the day with them and the kids all loved hanging out together. Rachel especially loved taking advantage of Miles' sit and stand stroller. We really had a great day with all of our friends. And were sad to not see our friends renew their passes right away, but looking forward to the time that they do and we can have more fun times at The Happiest Place on Earth! :)

Friday, September 12, 2008

An Evening of FREE Family Fun!

This evening at a Family Fun park in Murrieta, it was fellowship night and the local Christian Radio station had given Amy tickets to the event. The tickets got us unlimited games, miniature golf, laser tag, bumper boats, go karts, and even pizza and a soda for dinner!

Rachel was very excited to see the Chick-Fil-A mascot, the cow. We have this fondness for the Cow, as I wrote previously on my own blog. They had a prize wheel to spin and between the four of us, we won a nice breakfast complete with a drink!!
On the bumper boats with Daddy!
Suiting up for laser tag. This was SOO much fun.
Isn't she cute all suited up??
We ended our evening with 18 holes of miniature golf. Rachel played with us adults, Hannah went on and played with some other friends just ahead of us. Rachel did a great job with her own ball, and golfing everyone else's. She was having so much fun and was so cute too! We had a great evening of family fun and fellowship with our friends.

Blessed to Live in the U.S

I've been following Jeff's blog of the current Operation Smile mission.

Yesterday, they screened 204 patients, and by the end of today, they'll have screened over 350. Jeff posted pictures of the day. And this picture moved me to tears.This child looks to be about the same age as Rachel. And yet, his/her (I can't tell if it's a girl or boy) lip hasn't been fixed. If this child lived in the United States, the cleft lip would have been repaired by 12 months of age. Rachel's lip was repaired when she was 5 months old.

We are so blessed to live in a country where medical attention and insurance is available.

Through Operation Smile, this child's smile can be repaired for as little as $240, or just $20 a day. Donate a smile today.

Thursday, September 11, 2008

Support Group Opportunity: UPDATE

I had my little photo album in my purse of Rachel's Journey. I had the room number of the location written down. I even scored a front row parking spot and to anyone who's ever been to Loma Linda or visited someone there, knows that in itself is an act of God! I was thanking Him all the way to the front door!

However, once inside, I became disappointed. The volunteer at the information desk said the room I was looking for no longer existed as the cancer center had been built in it's place. I went to the concierge desk and she willingly called the operator and then was transferred somewhere and waited on hold for well over 20 minutes. No one has any idea what I was searching for.

I was bummed.

But tomorrow morning, I'm going to give it one more shot. I'm going to call the Craniofacial Team department and ask them directly if they have a support group. And if they don't, I'm going to tell them to update the website!!! :)

But if they don't have a support group, I'll continue to be a support and encouragement to those who make their way here to Rachel's Journey.

Support Group Opportunity

At Rachel's last craniofacial team appointment, Steven and I talked to a social worker about perhaps becoming getting my name and phone number on a list to call when people have a baby born with a cleft. My idea was to be able to visit people in the hospital, show pictures of Rachel's Journey and be a support and encouragement to them at a time where everything is so uncertain, etc. They took my name and number, and never called. I never contacted them again either.

And then came my meeting with Joy and Aiden on Monday. Not only was I able to help her and answer questions about what the surgeries hold for Aiden, but it was nice for me to talk about Rachel and all she's endured and be able to give God the credit for how awesome she looks, etc. That meeting really renewed my desire to be of encouragement to a Mommy in the same situation I once was in.

So I started researching on the Loma Linda University Medical Center website, where Rachel has all of her cleft related medical care. They have a support group called "Smile For Miles" and it just so happens to be meeting tonight!

I'm not going in hopes of having someone there who's ahead of where Rachel is to glean information from (although that would be awesome), but I'm hoping I can go and offer encouragement to parents new to this journey. I know if someone had been there to offer a picture, some 'been there, done that' parent information, and encouragement, at the very start of our journey, it wouldn't have seemed so scary and uncertain.

I have put together a nice little photo album of Rachel's Journey through pictures, to carry in my purse. Not only for taking with me tonight,but so the next time someone compliments me on her appearance, I can show them my little photo book and tell them how God has touched this little life.

Wednesday, September 10, 2008

Disneyland: Just Mommy and Rachel

It's been a very long time (too long) since just Mommy and Rachel had been to Disneyland. For months, we've met family, gone with friends, even had Hannah off track for nine weeks, etc. Today it was just Mommy and Rachel and we had a wonderful time. We strolled, we meandered, we window shopped, we did things Rachel wanted to do, and some things Mommy wanted to do.

We arrived shortly after 9:00 and the parking structure wasn't even open yet! We had to wait in line for it to open, as Disneyland didn't open until 10. But once open, we were parked outside the structure and this is what we saw....lots of open space and an empty parking lot! Once off the tram, I thought we'd window shop through the World of Disney store, but unlike times past, it wasn't even open yet either! So we got in line at the Disneyland gates. The gates opened at 9:30 and then Main Street was open for half an hour prior to the rest of the parking opening. We looked at the pretty flowers, and saw some characters, and wandered through the shops on Main Street. Our last visit, we had discovered that Rachel is now tall enough for a lot of the good rides, including Star Tours. And today, she wanted to try it. We literally walked on the ride and soon after it started Rachel was grasping my arm. It wasn't until the ride came to an end that she became upset. She didn't like the ride. But said she'd 'maybe' try again with Daddy. From there, Rachel wanted to see the princesses, So we went to the area where the princesses are and waited for that attraction to open, and then waited our turn in line. Once inside, we saw Mulan, Sleeping Beauty, and Snow White. For some reason, Rachel was especially excited about seeing Snow White.After spending some time in the Princess Fantasy Faire, we did a favorite ride of Rachel's, the Teacups. She loves this ride and this time did all the spinning herself. She's so crazy! This was a walk on ride as well!! The new Mark VII Monorail arrived at Disneyland several months ago and up until recently, it's only been testing, not carrying any passengers. This was something I wanted to do and mark off my list. We had an entire cabin to ourselves on the first leg of the trip to the Downtown Disney station. That was a first!After the monorail ride, we had time for one more thing before we needed to be heading down Main Street and to the trams. We needed to be back to pick up Hannah by 2:15 and I have it figured I need to be on the trams by 12:45 in order to give adequate time to get home, allowing some time for traffic, accidents, etc.

Rachel chose to do Autopia. Talk about a crazy driver! She drove the entire course and laughed and laughed at how crazy she was being. She had a lot of fun driving and looks forward to doing it again. And with the ending of that ride, we headed down Main Street, stopping off in the Candy Palace for some treats for Hannah and an apple for Gramma. And then it to the trams and on our way home. It was such a great day! Looking forward to another low key day soon. Especially if the weather and crowds continue to cooperate!

Tuesday, September 09, 2008

First Day of Preschool

Assuming all goes well this next school year, with speech and maturing, this very well could be our LAST first day of preschool, as Rachel will more than likely go to Kindergarten next year.

She was excited and was ready to leave when I took Hannah to school. When time came to take her to school and leave her, she had no separation issues, and was left happily playing. When pick up time came, she's well aware of the routine and knows she'll be back in a day or two and didn't object to leaving, like the first day last year! LOL.

Operation Smile Mission

Three years ago, I stumbled across a blog of a surgical nurse volunteer with Operation Smile. The blog followed the Operation Smile team as they were on a mission in China, creating smiles.

Today, the team leaves for a new mission, to Paraguay. And the blog, is of the same surgical nurse from three years ago!

When I followed this mission three years ago, it gave me the desire to want to use my nursing skills someday on an Operation Smile mission, but after some research, I discovered you have to have your RN in order to go. I don't have that, and doubt I'll ever go back for it, so I'll watch and follow Jeff and the team "change lives, one smile at a time".

If you'd like to follow the team on this mission, you can do so here.

Monday, September 08, 2008

Meet Aiden

A couple of days ago I wrote a post about how a mom, after looking through Rachel's Journey had discovered we had the same plastic surgeon, etc.

Long story short, we met today for lunch and we talked for over two hours about our experiences with having a cleft affected baby, I answered her questions, told her Rachel's story, showed her the inside of Rachel's mouth and how awesome the palate repair was. It was a great time of talking, sharing our baby stories. Aiden will have both his lip and his palate repaired on October 1st. That surgery will be lengthy and the outcome will be phenomenal to have both his lip and palate repaired in one shot. It'll be one less surgery, one less time under the anesthesia, one less time to have to deal with restraints, one less time of handing your baby over and watching the scrub nurse walk away.

Seeing his adorable little face, watching him stick his tongue through his cleft in his lip, seeing him drool and drool and drool, and then watching him eat with the Haberman, brought back soooo many memories of those first months with Rachel. The Lord has been so good to Rachel, and to us, in this journey. It was great to meet Joy and Aiden and his big sister, Alexis (who is exactly one day older than Rachel!!). And we look forward to meeting again soon!

Saturday, September 06, 2008

Playhouses on Tour

Project Playhouse is an organization of local building industries who come together to build extraordinary playhouses. The houses are put on tour and then ultimately auctioned off whereas the money goes into shelters for those without homes.

The Project Playhouse tour is currently on display at Victoria Gardens, one of the upscale outdoor malls in our area. And this evening, we went and toured the houses.

The playhouses were simply amazing! They had working electricity, really cool nooks and crannies for loft beds, some have televisions, and one even had air conditioning! They were unbelievable.

This is the house with air conditioning and a flat panel television.
The inside of the modern house.

The lookout tower. Complete with a wrap around porch.
The Kitt Abbott house, American Girl Dolls were on display inside.
Emma was with us for the night and all three of the girls loved touring the houses and looking inside. And of course dreaming of the chance we might actually win the raffled off one. LOL.

New Cleft Friends

Yesterday afternoon, I checked out Rachel's guestbook. Something I haven't done in months because it'd been so long since anyone had signed it, I simply forget it's there. Well, there were two entries.

One, from a mommy in Illinois (thank you for your kind words) who had a son with a cleft lip and palate and then another one local to us, probably only 15 miles from where we live. She found Rachel's Journey through a link on another cleft affected friends blog and as she searched through the pages of Rachel's Journey, she recognized our plastic surgeon because it's her sons plastic surgeon as well!!! Which means essentially, we see the same craniofacial team of doctors, same hospital, etc. Her little boy is 4 1/2 months old and was scheduled to have his first surgery this coming week, but due to scheduling complications (been there, done that) it's been moved to October.

Long story short, I emailed her and we are meeting in person for lunch on Monday!!! I am so excited.

The journey of having a cleft affected baby can be a lonely one. But thankfully there are many of us cleft affected families that keep blogs now (see links in sidebar) that we have our own community of online support. However, as good as online support is, it's nice to know someone in real life whom you can talk to, ask questions of, stare at the lip repair, etc.

When Rachel was born, we had so many questions. We were scared, anxious, and clueless of the road that laid ahead. If someone had come to visit us and offered answers and encouragement, it would have maybe been a little easier to grasp. And for that very reason, at our last craniofacial team appointment, we talked to the social worker about possibly becoming a parents advocate, if you'd call it that. My idea was to be a contact for the craniofacial team to call so that a visit could be made to the families who'd had a baby born with a cleft (while they were still in the hospital) to answer any questions and show pictures of Rachel's Journey as a source of hope and encouragement for their own journey.

So it is with great excitement and anticipation that I look forward to meeting these new friends on Monday to answer her questions, offer encouragement, and support to her as she's at the very beginning of the journey we've already traveled.

Friday, September 05, 2008

Preschool Visitation

Last night was the parent orientation at Rachel's preschool. And today was preschool visitation whereas the preschoolers can come and meet their teacher and see their classroom, etc. Rachel found her cubbie, checked out the location of their bathroom, and played and played and played some more. She is so excited for Tuesday!

Thursday, September 04, 2008

Cindy McCain and Operation Smile

Did you know that Cindy McCain, the wife of presidental-hopeful, Senator John McCain, sits on the board of directors for Operation Smile??

Did you know that the daughter that she and Senator McCain adopted in 1991 had been born with a cleft lip and palate??

I can't remember where I read it, but one of the things she hopes to continue to raise awareness for if and when she becomes the First Lady, is in regards to facial birth defects. How cool is that!?!

Tuesday, September 02, 2008

Loving the New Bike

Rachel loves her new big girl bike that she got for her birthday. You should see her ride on the patio, around the patio table, and to the side yard. She does great! This evening after dinner, we went for a walk and both girls rode their bikes. Rachel insisted we go 'the long way' and rode the entire way with a few pushes on the back of the seat from Daddy. She's riding a big girl bike like she's been doing it for a lot longer than 2 days!

Monday, September 01, 2008

Labor Day Happenings

We spent our Labor Day hanging out at Uncle Robbie and Auntie's house, cooling off in the pool, playing with McKenzie and Haylee. We had a great day and enjoyed spending time with our family.