A Quilt from Great Grandma

Those of you that know my grandma Know what an accomplished seamstress she is.  Over the years I have gotten so many treasured items that she made.  From clothes when I was I kid, to fancy dresses, place mats, bibs for the girls when they were babies, and even a Christmas tree skirt.  She also is a fabulous quilter and has made quilts for just about everyone in the family!  Last week River got his own quilt from great Grandma!  It resembles a rocking horse quilt that she made me when I was little.  I loved my rocking horse quilt so much that by the time I was a teenager, there was only a small corner left of it.  She made me a replica of this quilt when I was 19, and I still have it tucked away in perfect condition!  River's quilt is lovingly titled "The little Engine That could" because he is our little engine that could!  It is sure to keep him snugly warm over the years.

       Just an update on how River is doing....he is doing great and his cleft does not bother him one bit!  We are getting lots of big wide smiles from him, and I try to cherish all these big wides smiles from his cute little cleft.  I'm sure going to miss it when its gone, I like him just the way he is. He is a happy baby and always smiling and laughing, and telling us stories with his baby babble.  He seems to have some red in his hair, which my mom is not doubt happy about.  Time will tell if her turns out to be a strawberry blond or an auburn red head. He has big bright blue eyes that he is always getting compliments on.... He got those from me :)  He is a handsome boy that's for sure!  We will be going to Shriners in 2 weeks for a check up, and to talk about surgeries which will be coming up soon.

3 months old!!!

Holy Cow!  River is 3 months old today!  Man how times flies!  I wish he could stay my sweet cuddly baby forever!  He is getting so big, laughing and smiling a lot.  He is really strong and almost sitting up on his own.  He is most happy in the early mornings when the girls are getting ready for school.  He tells us stories with his baby babbles, it is so cute!

Easter Weekend

       We had a nice sunny Easter weekend.  It started out on Saturday with Brooklyn's first softball game.  She plays for the Mt. Hood Blue Angels, and they won the game!  Brooklyn had a nice hit and scored at run for her team. Hopefully she'll follow in the foot steps of her Auntie Tay and be an awesome softball player! 

          The girls were up bright and early Easter morning waiting to see what goods the Easter Bunny had brought them.  Justin and I were up late with River and we didn't get to bed until 2am.  We had a nice pancake breakfast, then did some yard work. Grandpa D came over and did his annual Easter egg hunt for the girls, while I picked a bouquet of Tulips from the side of the house. Justin cooked a good ham dinner, and Grandma T brought over strawberry shortcake for dessert.  The girls and I also decided to do a mini photo shoot for River, with outfit changes and all!  Enjoy the pics!

First Beach Trip!

Last week we headed down to Lincoln City for River's first beach trip.  At first we didn't think we would be able to fit all 5 of us in the car, but the girls were willing to sacrifice comfort to go!  They were jammed in pretty tight in the back seat, but we made it work!  Needless to say we are in the market for a minivan!  We stopped at Spirit Mountain buffet on the way down (Our fav!) and we had an hour to kill before the dinner buffet opened.  Kinda hard to gamble when you have the kids with you (and little money lol) so Justin took the girls into the kids arcade while I sat in the lobby and fed River his bottle. 
        We stayed at a great hotel right on the beach.  It had a fireplace and an awesome ocean view!  It also had an indoor pool, a must for the girls.  I have fond memories of my parents taking us on many Spring break beach trips to the coast.  There was always an indoor pool....a good thing to have when you live in Oregon and never know what the weather is going to be like.

          It did rain of course, but we had half a day of sunshine on Monday and spent some time on the beach.  The girls and Justin explored the tide pools, while I carried River around in the baby pack. We also made a quick visit to Newport to visit my Aunt Jeaneene who has lived and worked there for over 30 years!  We don't get to see her often but it is so nice when we do! We also stopped at the OSU Mark Hatfield marine center and spent some time in there.  Its a cheaper version of the Newport Aquarium, but we actually like it better.  There is a resident octopus there that the girls like to check out.  They have a short life span in captivity so it's a different one each time and the girls love seeing them each time.  This time the octopus was named "Pearl".  The girls and I also managed to sneak in a brief trip to the outlet mall for some shopping deals!

Shriners

        Our visit at Shriner's Children's Hospital last week went very well.  We felt very at ease from the moment we got there and knew that this was a good choice for us. They had a huge waiting room area that was designed just for kids.  Nintendo game consoles set up, a marble ramp, and big windows looking out over the city.  They even had those fancy pagers that vibrate when its your turn, like they have at restaurants.  Everyone was soo nice, almost too nice!  There were several other children and teens with clefts there as well.  I caught myself starring a few times.  I couldn't help but to look at how great these other kids looked, hoping for the same outcome for River.
         The doctor did a very good job explaining everything to us.  The new way of fixing clefts vs. the old way.  Part of the old way was using the Latham device we choice not to use.  This just confirmed that we made a good choice to put off the surgery and get a  second opinion.  For me it was another lesson in always follow your gut feeling.  My gut feeling was that I did not want a device pinned into his gums and mouth causing him pain.  We were also told that we could achieve the same results of the Latham device by using tape to pull his cleft closer together.  This takes longer and it will be a little longer before he has his lip fixed now, but it is a better less painful option. The special cleft tape we are using is not covered and Shriners does not carry it.  This is going to cost us almost $100 a month. They also assured us that even without the tape or device, he will still get a good repair. We go back to see them in May, and will talk about surgery dates then.
          Before we had even seen the doctor and the nurse was doing our intake she asked us "Are you here for a second opinion or transferring care?" I instantly said "Transferring care".  It just felt right.

I was very surprised that everyone kept asking us where we were from.  They explained to us that many people from all over the world come to Shriner's, they even have a "Shriner's Bus" that comes down from Canada to bring patients.  In fact there was another cleft child there that same day from Utah.  We feel very Lucky to have a Shriner's here in Portland.  For those of you who are not familiar with Shriner's it is up by OHSU.  Below is some info on Shriner's in general. Shriner's Portland is supported by 8 different Shrine temples across the west USA and Canada.  Each Shriners hospital is supported by different Temple's.  The great thing about the Shriner's program is that children can stay in their system until they are 21, they also cover a few tings that our insurance does not.    
The Ancient Arabic Order of the Nobles of the Mystic Shrine, also commonly known as Shriners and abbreviated A.A.O.N.M.S., established in 1870, is an appendant body to Freemasonry, based in the United States. In 2010, the Ancient Arabic Order of the Nobles of the Mystic Shrine, as well as Shriners North America, changed its name to Shriners International, now covering nearly 200 temples (chapters) across North America, South America, Europe and Southeast Asia. ^[1] The organization is best known for the Shriners Hospitals for Children it administers and the red fezzes that members wear. The organization is headquartered in Tampa, Florida.^[2] Shriners International describes itself as a fraternity based on fun, fellowship and the Masonic principles of brotherly love, relief and truth. There are approximately 340,000 members from 194 temples (chapters) in the U.S., Canada, Mexico, the Republic of Panama, the Philippines, Puerto Rico, Europe and Australia. On July 6, 2011, Shriners International commissioned Emirat Shriners of Heidelberg, Germany, as its 194th temple, and took the first steps toward forming a new temple in Mindanao, Philippines. ^[3
Despite its theme, the Shrine is not connected to Islam. It is a men's fraternity rather than a religion or religious group. Its only religious requirement is indirect: all Shriners must be Masons, and petitioners to Freemasonry must profess a belief in a Supreme Being. To further minimize confusion with religion, the use of the word "Temple" to describe Shriners' buildings has been replaced by "Shrine Center," although individual local chapters are still called "Temples."

Surgery Postponed

Well, yesterday was supossed to be the day we had River's first surgery and Latham device put in.  After much thought and research, Justin and I decided to put it off and get a second opinion.  We had been talking about going to Shriners Childrens Hospital since I was pregnant and we first found out about his cleft.  Shriners is known around the world for their work on clefts and they also pay for medical expenses that your insurance doesnt cover.  Having the Latham device put in was not our choice in the first place.  The plastic surgeon had the device made and surgery scheduled before we even had our first appointment and before she had even examined River.  This made me feel a bit like I was backed into a corner.  I wanted more options and the Latham device is not our only option.  After looking into the device further we discovered that it can restrict jaw growth and cause an under bite.  We have only heard wonderful things about Shriners and decided that we needed to go hear what they had to say before we make a final decision.  We see them March 13th and will make our treatment decision then.

 River is growing daily and we cant believe he is almost 2 months old already!  He is such a little sweetie!

What is a Cleft?

Though cleft lip/palate is the most common birth defect in the US affecting 1 in 700 births, many people know very little about it.  Here is some general info I wanted to share.

Cleft lip and cleft palate are facial and oral malformations that occur very early in pregnancy, while the baby is developing inside its mother. Clefting results when there is not enough tissue in the mouth or lip area, and the tissue that is available does not join together properly.

A cleft lip is a physical split or separation of the two sides of the upper lip and appears as a narrow opening or gap in the skin of the upper lip. This separation often extends beyond the base of the nose and includes the bones of the upper jaw and/or upper gum.

Cleft lip and cleft palate can occur on one or both sides of the mouth. Because the lip and the palate develop separately, it is possible to have a cleft lip without a cleft palate, a cleft palate without a cleft lip, or both a cleft lip and cleft palate together. A cleft palate is a split or opening in the roof of the mouth. A cleft palate can involve the hard palate (the bony front portion of the roof of the mouth), and/or the soft palate (the soft back portion of the roof of the mouth).

What causes a Cleft Lip?

In most cases, the cause of cleft lip and cleft palate is unknown. These conditions cannot be prevented. Most scientists believe clefts are due to a combination of genetic and environmental factors. There appears to be a greater chance of clefting in a newborn if a sibling, parent, or relative has had the problem.