The Pumpkin Patch

October is a busy month around our house. With both the girls' birthdays, AND Halloween, and endless soccer games, we are always busy this month!  We always try to squeeze in a trip to the Pumpkin Patch at Sauvie Island too!  I made sure we went last week when we had our last little bit of sunshine before the Fall rain set in.  I would much rather deal with dry dusty shoes in my car, than muddy rain boots!  The pumpkins were huge this year!  The dry weather really made a nice crop! They all had thick sturdy stems, and we only saw 1 rotten pumpkin!! 

 

The pumpkins were planted a little farther out this year, so we had some walking to do!  We got some great pumpkins, and great pictures!  River seemed to be having a good time and liked to drum on the pumpkins. 

He is fully healed from his lip repair and looks great!  He has the sweetest smile and is always happy!  He is on the go and crawling pretty fast now.  He loves shoes and he LOVES the cats and crawls all over the house after them!

Surgery for River

Well,  River had his lip surgery on August 23rd and it was a big Success!  The anticipation of waiting around for surgery this time was not as bad as I had thought.  We just went on with our lives and before we knew it, it was time for the real thing.  All of us, the girls included were not as emotional as we were on the "dry run".  I think We had cried about it all we could, and everyone was at peace with it.
           The surgery lasted about 3.5hrs and they called us every hour to let us know he was doing good.   Dr. Kuang came out to the waiting room after surgery to talk to us and show us pics of River!  I have to say I was a little disappointed to see him for the first time from a camera and not in person.  I was expecting to have this "moment" when I saw him for the first time and that didn't happen.  None the less we were AMAZED at how great he looked!  Dr. Kuang did a wonderful job and we can't imagine him looking any better!  This just confirms for me that I made the right decision about doctors and procedures, and all the second guessing I did about changing doctors several times, paid off.
      I was told that it would probably take a few weeks for him to be back to his normal self, and that seemed to be true.  The first week he slept a lot and was on strong pain meds. He had nasal stents in each nostril to help them keep their form and not collapse. These were sewn in, and had to stay in for a full 3 weeks.  We were supposed to keep arm restraints on him so he wouldn't mess with his face.  He was such a good baby that we only had him wear them the first couple days.  He was getting frustrated and was more at ease and slept better with them off.  He actually didn't even touch his face or try to pull at his nasal stents.  I had to watch him as far as putting things in his mouth though.
          He is now 3 weeks post op and got his nasal stents out on Friday.  This was the final step to seeing his new smile.  He is back to his happy self and is just starting to crawl, which is a huge reality check for me!  With the girls back at school, I have lost my helpers and have to keep an eye on him constantly.  My free time is definitely more scarce these days!  He is such a handsome little man, and though I miss his old smile, I love his new smile even better.  It feels soo good to have this first surgery behind us.  We will be enjoying the Fall with some down time from the many doctor visits, and will get ready for Palate surgery after the holidays in January or February.  This next surgery is the big one, and much more extensive than the lip repair.


Waiting to go into surgery

 His Cleft bear has a scar on the same side as him

Eating peas!  You can still see the nasal stents are in at this point.

3 weeks post op taken Sunday September 16th

Pre surgery and 6 month old pictures!

I had a friend come take some pictures of the kids, mainly River though.  I wanted to have some pictures of him before surgery so he could always remember that we loved him with the sweet smile he was born with, and we would never forget it.  He is such a charmer and everyone that meets him falls in love.  You couldn't meet a happier baby!  Here is a sampling of the pics. Justin wasn't here the day the pics were done so we did our own photos with the boys in their Hawaiian shirts!

Surgery ~ Dry Run!

Well, as most of you know by now surgery did not happen yesterday.  Last week he developed a bad rash under his chin in the neck folds.  We had no idea it had gotten so bad, so I took him to the pediatrician on Monday.  She did a culture and it turns out it was a Strep A infection and needed antibiotics.  This was a bummer because he needed to be healthy for his surgery.  Ever since he was born, I knew we had to keep him as healthy as possible for upcoming surgeries.  He has not even had a cold yet, and the week before surgery he just has to get a rash.  At our Pre-op appointment on Wednesday, they looked him over and said surgery was a GO.  I even asked the anesthesiologist if the rash was going to be a problem and he said no.  Everyone acted like it was no big deal.
     As you can imagine we didn't get much sleep on Wednesday in anticipation of what was to come.  We had to be at Shriner's at 6am to check in for surgery.  They had him all checked in and ready to go.  Complete with a pink hospital gown that made him look like a girl!  (they said the small ones only come in pink)  Right as they came in to get him to take him back to surgery, one of the nurses asked if he needed his antibiotics before he went under.  This lead to a conversation as to whether or not the surgeon even knew about his rash.  Turns out she had no idea.  She came in looked him over and said it was to much of a risk to do surgery until he was done with his antibiotics, even though the rash had cleared up significantly.  This was not what we wanted to hear, but we understand why.  It was just such an emotional let down.  You prepare yourself for your baby to go into surgery and it doesn't happen.  Now we have to go through the anticipation and waiting all over again.  They said we could reschedule for 2 weeks to a month.  So the waiting begins again. These are pics of our "Dry Run" or practice for surgery.  He was being such a good boy, even for having not eaten in a while.

Surgery Date

Wow how the time flies!  River is 5 months old today and I really can't believe it!  He is getting so big and strong is really is such a sweet happy boy.  His big blues eyes are always shining and he loves to smile!
    We have been super busy these last couple months.  The girls are out of school, and we have friends visiting from Russia for 2 weeks!  I have put off updating the blog because we were in the process of interviewing more doctors and really had no idea when or what his next step in cleft treatment would be.
      As you know back in March we decided to move River's cleft care up to Shriners.  We saw a doctor up there that seemed great, but had a different approach to fixing clefts than I was expecting.  I decided to trust him and see what he said about surgery when we went back in May for our follow up appointment.  When we saw him in May I was still not satisfied with his method and some of his answers to my questions.  Little did he know that this mama bear had done her research, and yet again I had a feeling that this was not the best doctor for River.  By this point I had begun to feel upset and a little crazy.  Was I expecting too much?  How could the treatment I wanted and had expected for my son be different than what these 2 experienced doctors were telling me.  I put my frustrations out there to some friends and family and ended up getting a referral for Dr. Anna Kuang who happens to work at Doernbecher AND Shriners.  I called Shriners and asked if I could have a second opinion (but really our 3rd opinion at this point) with Dr. Kuang.  They were happy to oblige and made the appointment.  Justin had to work on the day I was taking River up there.  I said to him "I hope the third times the charm!" I also was concerned that if this was the doctor I liked and wanted to go with, he would not be there to see for himself.  He said he trusted my judgement and off River and I went.
           The appointment went great, and this was FINALLY the doctor I had been looking for!!!  She confirmed my thoughts that the treatment the first Shriners doctor had wanted to do was not a good idea for River. She is also the top dog up at OHSU.  She is the head of plastic surgery, director of the Cleft and Cranio facial team, AND a professor.  Cant get much better than that!!  I hope some day River will be proud of me and how hard I worked to get him the best care and doctors possible!
   SOOO the big question many of you have been asking is when is his first surgery?  We have a date of July 12th, less than a month away!  The date will only change if the ENT (ear, nose, throat doctor) is not available to put tubes in his ears.  I'm nervous and excited at the same time!  I'm really going to miss his big wide smiles!

           Hope everyone is enjoying the start of Summer!  I will update when it gets closer to surgery and I have more info.   

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.

An update

As many of you know, River Gregory Thompson entered the world on January 18th 2012.  He was born with a unilateral cleft lip and palate.  He is healthy and happy and just like any other baby except that he has to drink from a special bottle.  He is 1 month old now and has just gotten above his birth weight!  Something that takes most cleft babies a little longer to do than most.  His sisters love an adore him and continue to fight over who gets to hold him and do other things for him.  Jayden is mastering the task of diaper changes, something Brooklyn has not yet attempted to do.
Things are moving quickly as far as his cleft repair goes.  A few weeks back we took him to the dentist to get his mouth molded for his oral device.  The device is called a Latham and will help close his cleft.  It is like a retainer on both sides of his mouth, attached by a bar.  The bar has a tiny screw on it that we will have to turn with a tiny screw driver each day.  This will bring the two sides closer together and make the surgery easier.  He will have the surgery to put this device in on March 7th.  They will have to put him under anesthesia for about 30 minutes.  He will wear the Latham for about a month or so, then they will take it out when they close his lip.