Ethan's Story, Part VI

Ethan, Scott, and I were taken to our postpartum suite area. It was a room with two beds and one bathroom, and yes, I had a roommate, ugh. Scott left the hospital to go home and rest close to 3:30am. There was NOWHERE for him to sleep in the PP room anyway.

All night, I just stared at Ethan. I could not believe that he was here! He never cried and he slept the entire night. He never ate. He would make these suckling motions and noises, but the nurse kept telling me that when he was hungry, he would cry. I never slept, I just stared and loved on my little boy.

Later that morning (7am), the pediatrician made rounds. She came back into my "room" and said that she "had concerns". I was alone. I was sleep deprived. I was a postpartum mother. I was a NEW mother. I was about to hear the words that forever changed our lives.

"Your baby shows markers for Down syndrome"

WHAT?!?!?!!? My ob never said anything! I took the AFP, it was negative! You're wrong, I thought. She showed me Ethan's palms and how he had the simian crease in both hands. She mentioned that his eyes appeared to look like a child with Down syndrome.

From that moment on, I just stared at Ethan. I DID NOT SEE IT.

Scott came right at the beginning of visiting hours. I broke the news to him. I think that he kept the emotions he was feeling to himself. Such is a man. We held on to some hope that they were wrong. It was all just one big coincidence.

As the day went on, we had visitors from family and friends. When my mom and sister, Kim, came by, they asked if I had nursed Ethan yet. No. They helped me at least try. Ethan would not latch on. For the first time in a LONG time, I felt bonded with my sister. She was helping me be a Mother. I will forever cherish that moment. I informed them of the doctors concerns and they didn't see it either.

Around 4:30pm, the nurses said that they needed to take Ethan to the nursery for assessment. They said that they would bring him right back. During this time, Scott's mom came with dinner. We enjoyed the meal until I told Scott that Ethan had been gone too long and to go check on him.

The next thing I know, a nurse comes in with another gown for me and says that I need to come to the nursery.

When I walk into the nursery, I see my baby boy laying underneath a warming lamp and oxygen hood. His blood sugar was down from not eating so he was given some sugar water. His oxygen saturation was not staying up, so they put him under the oxygen hood. He was presenting signs of infection (I was Group Beta Strep positive with only one dose of the antibiotic since my delivery went so quickly and because that was given at 6 cm, chances are it wasn't even in my system long enough to protect Ethan even a little), and the doctor thought that she heard a heart murmur.

The doctor called Valley Children's Hospital in Madera/Fresno to see if they wanted Ethan transported. As soon as they were given all of the signs/symptoms, VCH sent an ambulance to transport Ethan to VCH- an hour away. He wasn't even 24 hours old yet.

Waiting for the ambulance to come, I cried. I shook. I was so scared. What did I do? I took care of myself while pregnant? What could I have done differently?

***To Be Continued...***

Happy Birthday Jessie!

Me & Jess on our way to Santa Cruz, circa 1995


Foxy Ladies getting ready to head out on the town, AKA: VEGAS!!! 2003

Jessie and I have been friends since we met in college in 1994. She has been the keeper of many of my secrets, my bridesmaid in my wedding, one of my rocks after Ethan was born. If it weren't for her, I wouldn't have had a cell phone charger since I left mine at home and I was not going home for a phone charger after Ethan was born. She has always been one of my supports that never waivers. Sometimes, we go a long time without being able to talk since she is still in California and now has her own baby girl...ok, she's two now, but still.

We will always have stories to tell! I love you Jessie! I hope that you have a WONDERFUL birthday today. And, thank you for spending YOUR birthday with me so I could get married with you by my side. *muah*

Coming HOME!!!

Well, if all is going according to plan, I should be on a plane heading for London! We have a layover in London for 5 1/2 hours. If only we could go OUTSIDE OF THE AIRPORT!!! Oh well, I will say that I have been to London! LOL!

HAPPY 10th WEDDING ANNIVERSARY!!!

Ten years ago today, Scott and I were married in front of over 200 of our family and friends. My dad walked me down the aisle. My mom and mother-in-law wore similar dresses, and yet so different. But, the best part was my fiance dressed in his tuxedo, soccer cufflinks, and Adidas tennis shoes meeting me at the altar. I could see the emotion in his face. He was trying to not cry. Then, my dad gave me away.

Our ceremony was not very long, but it seemed like an eternity because my bouquet had an extra DOZEN roses in it! That thing was heavy! But, it sure was beautiful. Pastor Maynard Mininger officiated. I am not sure if he officiated over any other weddings before he was killed in an auto accident by a drunk driver a couple years later (DO NOT DRINK & DRIVE!!!).

Our music was to the soundtrack of my most favorite movie of all time... THE PRINCESS BRIDE. (Mawage is what bwings us here togever tovay...do you have va wings?) My friend, Debbie Iversen sang a song by Dime Store Prophets while we lit the candles.

Pastor Mininger told Scott that I was the Queen- that's right. I even have it on video. HA! Our vows were standard, but Scott choked up when he said "Til death do us part". I, being the stone cold hearted person that I am, did not cry. (Dripping sarcasm there...it was very odd that I didn't cry)

I was SO hot. Not hot like sexy hot, but hot as in AFRICA hot! My makeup melted. My curls fell. I did not bring fixer up make-up, nor did I bring a curling iron. So, our pictures are not the most beautiful. People said that I was so happy that I was glowing. Um, thanks but no...I was melting!!!

Our reception was very laid back. It was held at my manager's home in her backyard. She has a beautiful home and even had a heart shaped bush in the backyard. I smashed the cake up Scott's nose- something to this day he vows to seek revenge upon. He won't do that to me. ;-)

We enjoyed our time with those we love. My cousin, Tara, caught the bouquet. And, come to think of it- I don't remember doing the garter. Hmmm...I don't remember why we didn't do the garter.

We went home, found that our bridal party thought that it would be hilarious to short sheet our bed (simply tucking in the sheets at the top of the bed instead of bottom). We didn't care- Scott can't stand tucked sheets anyway. We actually were sitting on the sofa watching the Pretender when we heard someone at our gate. It was our friends, Elvira & Brian, dropping off their gift. They did not want to disturb us. LOL! Right- we're watching TV. Come on in!

After they left, we had to be sure to have our bags packed. We left for Hawaii at 4 am the next morning!!!

~For Scott~
Happy Anniversary my love. Thank you for being an amazing husband and father. We have definitely had our share of challenges thrown at us over the past ten years, but we weather the storm and conquer. Thank you for the sacrifices that you make everyday for your family. I wish that I was with you now- instead, I am getting ready to board a plane for a very long trip home to you. Get ready for a welcome home to ME smooch. ;-) I love you. Never forget that or lose faith. We will conquer. Here's to another TEN!!!

Ethan's Story, Part VI

May 25th, 2001 1:21am

After a few pushes, Ethan came flying out. That was the most painful experience of my life- my dad, who was outside in his truck with the windows UP, heard my last scream to get Ethan OUT!!! Ok, so the whole hospital may have heard that. Give me a break- no drugs, remember!?!?!

I could not see him because I took my glasses off to get into the shower and then the rush to get into the bed without delivering on the floor kept me from realizing that I wasn't wearing them. Scott, Kamrin (my little sister), and my mom were there.

Ethan Scott Faulkner, 8 pounds, 20 1/2 inches with an 8/9 APGAR. LOTS of hair, no really- LOTS of hair. Everyone says that he looks like Scott.



Welcome to the world son.

***To Be Continued...***

Ethan's Story, Part V

May 24th, 2000

I am sitting in the recliner talking to my sister, Kim, on the phone. My due date is approaching and she is asking all sorts of questions. One of those questions was the ever personal "have you lost your plug?". Ummm, I don't think so. "Well, aren't you looking?". Sure, but half the time when I get up in the middle of the night, I leave the light off and I am not taking a flashlight to look.

Kim and I finish our conversation and I have to pee- imagine that at 9 months prego! Guess what I see? Yep. So, I called Kim back. "I lost my plug". Kim starts screaming in the phone and announcing it to all in her office---"My sister just lost her plug! The baby is coming soon!". Thanks for the announcement sis.

I had a nail appointment that day. So, I go to see Robin and I start having contractions. Robin was so cute making my nails and toes pretty for delivery day. I would put my head on the table with a contraction and she would announce it to the other technician's. Pretty nails in tow, I headed to JCPenney. I remembered that I still didn't have a nursing bra. I was still having contractions, but nothing regularly. I went home and unpacked the hospital bag and packed it again. I called Scott at work to tell him to stay close just in case.

My contractions were picking up a steady pace by 7pm. I didn't want to rush to the hospital before needing to be there and one of my biggest fears was getting to the hospital and being told to go home. Plus, it was Thursday which meant that Friends and Whose Line is it Anyway was on TV. I was not letting a little bit of early labor interfere with my weekly dose of comedy! I was on the couch on all fours rocking and breathing through the contractions and laughing in between. Scott was so funny- asking me if it was time multiple times. Not yet, maybe after the shows.

We got to the hospital around 10pm. Contractions were on top of each other now. We had to enter through the ER and I remember a little boy in the waiting room asking his mom what was wrong with me and she said, "She's going to have a baby". Then, I thought "Oh my gosh, I AM going to have a baby!"

I was checked in. It was a slow night in L&D. I was hooked up to the monitor and given the first of many 'checks'. It is true about what they say about checking your modesty at the door when you have a baby. I am expecting to be at least 4 cm and fully effaced. Nope. TWO CENTIMETERS, NOT EFFACED, -2 STATION!!! My fear was coming true. They are going to send me home!

Luckily, since it was slow, the nurses said to walk around and they would check me again in an hour. We walked, we rocked, we chatted with nurses, we rocked some more. Next check...FOUR CENTIMETERS, 80% EFFACED, 0 STATION!!! "Mrs. Faulkner, you are not going anywhere without a baby". Oh my gosh, this is really happening!

We did the same thing for the next hour. We discussed doing a water birth. I loved the idea of being in the water. I really did not want any drugs and something about the water seemed so calming. We were going to be moved to a larger room so that the tub could be set up. Before then, I was checked again. SIX CENTIMETERS, FULLY EFFACED, +2 STATION. As soon as the nurse was done checking me, my water broke. And then the REAL contractions kicked in. Oh my gosh- the previous contractions were NOTHING compared to post-water breaking contractions. My nurse came in and said "Honey, you are not going to get through this breathing like that". "WELL TELL ME HOW THEN", I snapped. After she showed me how to breathe, it was night and day. The contractions were so manageable through breathing.

Before the tub was set up, the shower was offered. We rolled up some towels for my knees and I got in the shower. Scott kept the warm water beating down on my back while also rubbing my lower back. I made sure to keep my palms flat against the shower wall instead of clinching them. I remembered our childbirth class nurse saying how when you tense up a part of your body, labor reacts in a defensive manner and it becomes harder. I was offered pain meds and I ignored the offers. I really did not want to be loopy for this occasion!

As things got intense, I was seeing lots of blood in the shower and the moans from me were getting louder. I was only in the shower about 20 minutes when I was checked again..."WE NEED TO GET YOU IN THE BED, YOUR BABY IS RIGHT THERE!"

***To Be Continued...***

Ethan's Story, Part IV

Scott and I had went back and forth on whether or not we wanted to know the sex of the baby. So, when we went in for our second u/s, the doctor asks us if we want to know. I asked the doctor how sure he was. He said, "100%". "Ok, tell me!" I couldn't take it. I had to know. It's a boy. I knew it. I knew he was a boy. But, Scott's brothers have girls, so I didn't think that it was possible for a Faulkner to have a boy! And, my sister only had boys at the time, so one of the grandparents was going to be getting a first. You should have seen Scott's face when the doctor said the baby was a boy- I think that every man looks forward to having a son and you could see it in his face how excited he was then. Scott's mom was elated while I think my mom was disappointed he wasn't a girl.

I didn't start showing until I was close to 7 months pregnant, and then it was WOW! There's a belly there! I guess that's because I already had a belly to begin with. I joke that I loved my pregnant belly because it was the firmest my stomach had been in years! :) I had a wonderful pregnancy- just some sciatica issues, but Ethan was very kind to me. He didn't beat my ribs up keep me up at night. The only thing that Ethan did to annoy me was have hiccups constantly.

I remember when Theresa was pregnant with Madison, she would tell me that Madison had the hiccups. I asked how she knew and Theresa responded with, "You'll know". So true. Ethan had them every day.

Hindsight is 20/20 you know...Ethan really wasn't an active baby in utero. But, I didn't know any different since he was my first. He moved every so often and had the hiccups- I just thought that he was running out of room in there.

My doctor took me out of work three weeks before my due date of May 29th. My blood pressure was starting to elevate and only coming down by laying down on my side. I was ordered to take it easy. I am sure that the part about me nesting and rearranging my entire living room was not part of taking it easy. I moved an entire entertainment center, 36 inch TV, sofa, and recliner by myself. My sister-in-law was going to help me after she picked up my niece from school, but I was just too dang impatient. Yes, she yelled at me later for that. But, my living room looked SO much better and ready for Ethan's arrival.

***To Be Continued...***

Ethan's Favorite Songs

For Stephanie, who has never heard of Charlie Daniel's Band and "The Devil Went Down to Georgia". :-)



Ethan is a rocker at heart. Ethan is the ONLY person Scott will dance with. They ROCK!

"Remedy" by Seether


And, Daddy's Favorite band Disciple. Scott has actually become friends with the lead singer, Kevin. Scott, Ethan, and I had the pleasure of having lunch with Kevin once. He really is an amazing man. Enjoy "The Wait is Over"...Ethan does!

Ethan's Story, Part III

Scott and I decided to take a vacation in December 2000. I was about 16 weeks pregnant. Scott's sister, Cindy, was living in El Paso, Texas so we decided to go visit. We also decided to not tell her that we were pregnant that way we could surprise her. We even wrote a poem to give to her- quite comical. I just remember it saying something to the effect of since we had a "roll in the hay, we now have a baby on the way!". LOL! Before getting to El Paso, we took a detour to Missouri so I could visit the Precious Moments Chapel in Carthage, MO.




We went up to my friend, Theresa's house the night before leaving and she would take us to the airport in San Francisco. Our itinerary that followed was:

* San Francisco to Phoenix
* Phoenix to Kansas City
* Drive from KC to Joplin, MO
* Drive from Joplin, MO to Carthage, MO
* Enjoy all of the beauty that is Precious Moments
* Return to KC
* KC to Phoenix
* Phoenix to El Paso
* Visit with family for a week
* El Paso to Phoenix
* Phoenix to San Francisco

That was a whole lotta up, down, and around for this pregnant momma! Boy, was I tired!

When we returned home, I was startled to find myself bleeding. I was so scared that I pushed myself to hard during our trip. Thankfully, I only had that one episode of bleeding and the doctor said not to worry as long as it stopped. I was just to take it easy for a few days to let my body recover from the trip. So far, so good with this little baby growing inside...

***To Be Continued...***

Ethan's Story, Part II

This is Ethan's very first picture. Dr. Loredo drew in a smiley face. We could not tell the sex of the baby at this appointment- it was too soon. This was to make sure we could see the heartbeat because we did not hear the heartbeat at my first ob appointment. You see, Ethan has been giving us gray hairs from the very beginning! LOL!

We joked after this u/s that the baby was going to play soccer just like its Daddy because it looked like he was 'heading' a ball the entire time! The names that we had come up with so far were Kalee for girl and Kayson for a boy. It was still so unreal that I was actually pregnant.

Up to this point, I only had one small bout of 'morning sickness' and it lasted about 3 hours, so I will not even complain! Ethan was definitely good to me in in the sickness department!

I began to feel Ethan at about 15 weeks. I described it as a bubble popping in my belly. I was on the phone with my sister-in-law and I remember that I was laying down relaxing on the couch when I interrupted the conversation to say, "I just felt the baby move!". It was beginning to feel real now...

***To be continued...***

Happy Birthday's!!!

Today, I would like to wish a Happy Birthday to two very special people in my life...



First: Happy 8th birthday Madison Jean!!! Auntie Boo, Scott, and Ethan love you SO much! I am sorry that I am not here for your birthday or your birthday party at Young Chef's Academy, but I am sending Scott and Ethan to be there with you. You make us so proud. Have a WONDERFUL birthday!!! Lots of love, hugs, and smiles from your Auntie Boo

Second: Happy Birthday to my best fried, Kimberly! Kimberly and I met through Downsyn- both our boys have that extra 21st chromosome! She lives in Texas, but we talk almost daily, if not multiple times daily. God was definitely in control when He put Kimberly into my life. If it weren't for Kimberly, I would not know of tethered cord, and I may still be sitting here scratching my head as to why Ethan is not walking independently yet. So, HAPPY BIRTHDAY friend! I love ya! Now, get you butt to NC already, would ya!?!?!?


Ethan and his buddy, Joel. Friends Forever- just like their Mommies.


Quality time with Auntie Kimmy.

I'm Here!!!

Over 24 hours after our journey began, we have arrived at our host residence for the night in Nairobi, Kenya. It was a LONG trip, but really not that bad. I will update more at a later time- internet is limited. God Bless.

Ethan's Story, Part I

Scott and I had been married for a couple weeks shy of two years when we found out that we were going to be parents. My only symptom of pregnancy was a very sore lower back. My friend, Theresa, had kept telling me that I was pregnant, but I didn't believe her.

My first pregnancy test was positive, so I made an appointment at the doctor's office. NEGATIVE. I was so disappointed. The nurse said that I could go to the hospital to do a blood test if I wanted. I didn't tell Scott that I thought that I was pregnant. So, I went to have the blood test alone. I got the call later that day..."Mrs. Faulkner, you are JUST pregnant- like only a week". I became THAT expectant mother. The one that knew from the very beginning. I thought this little knowledge would equal an eternally long pregnancy...luckily, I enjoyed every minute- even the sciatica.

I tried to think of some creative way to tell Scott that he was going to be a Daddy- no luck. He came home from work and as he was washing his hands, the conversation went a little like this:

ME: So, I took a pregnancy test.

SCOTT: Yeah.

ME: It was positive.

SCOTT: Yeah.

ME: Yes, and it was confirmed with a blood test.

SCOTT: Yeah.

I am so not kidding about that! LOL! Scott has never been one with words...

We didn't wait long to tell our family. Scott and I had painted the spare room a pale yellow already, just to paint it really. We decided that would be the nursery. I went out and bought some baby decorations and put them up in, what would become, the nursery. We had invited my parents and Scott's mom to come over for a bbq. My little sister, Kamrin, came too.

Scott and I told the group that there was a surprise in the spare room. My mother-in-law about cracked her head on the ceiling from her jumping up with excitement! She immediately got what we were saying...another grandbaby. My mom? A very confused look. I think that she was more confused about why Lynda was screaming. LOL! Kamrin got it too. I don't remember my dad's reaction, except a very genuine smile- I do remember that.

Kamrin came up to me later when no one else was around and says, "I want to be there when the baby is born". I told her that I had already planned on that. She was a little more firm in her response..."No, I want to be IN the delivery room when the baby is born". Yes Kamrin, I know- I had already planned on that.

****TO BE CONTINUED...****

Africa Bound!

Well friends, the day is here. Today I start my journey to Kitale, Kenya, Africa! I have to be at the church at 11am. We will leave from Greensboro and then head to Washington Dulles. From there, we will be on our way to Zurich and then the final stretch will be from Zurich to Nairobi. We will stay the night in Nairobi and then drive up to Kitale. We will make a "detour" through a safari-like game park which should be very cool.

Pray for me, the team, and especially my family. Scott and Ethan are sacrificing a lot for me to be able to go and I have to recognize them and how much I love them both. Their support means more to me than anything. I love my boys!!!

I will try to get to some form of internet at least once to check in, but you should have some fun stuff to read while I am away and some fun pictures to see too. Keep checking in!

Much love to all. God bless you.
~Kristen

Getting ready to go!

Tomorrow, I leave on a 10-day adventure to Africa. Am I ready? No. Have I packed? Of course not. Anyone who knows me knows that I do not pack in advance. It works for me- leave me alone! LOL!

I went to Wal-Mart and bought every medicine imaginable for this trip. I went to the health store and bought cranberry pills to fight bladder infections and probiotic pills to fight yeast infections (the malaria pills I am on could leave me susceptible to YI's- ugh). I have enough socks. I have peanut butter and granola bars to survive on just in case the food totally disgusts me, but I am told that it is fabulous. We'll see I guess.

************************************************************************************

Victory Junction sent me a few pictures from our visit the other day. Ethan did not want to have any part of picture taking that day, so I think that they turned out pretty good.

Tagged

I have been tagged by Bethany over at Dreaming On An Angel to tell you 6 random facts about myself that you may not know. These are tricky, but I will give it a try!

* You wouldn't know it from looking at me, but I am from the Miwuk tribe. My mom has black hair, brown eyes, and dark skin. I used to look like my dad with all my white sheep glory, but over time, I have morphed into the fair version of my mom.

* I skipped the 6th grade.

* I used to want to be an astronaut. My favorite movie was Space Camp. I wanted to attend Space Camp in Huntsville, Alabama SO bad. I even met Bruce McCandless- the first astronaut to use the jet pack.

* I have claustrophobic feet. LOL! I HATE shoes. Flip flops are my friend and worst enemy because they lack the support.

* My feet can't touch when swimming in a lake or ocean...I have been know to dive from shore just so my feet don't touch. Standing on the shore is fine and wearing swim shoes are fine too. I developed this issue in my teens- I used to bury my feet in the sand when swimming in the swimming hole, so it's all very strange.

* I was the first baby of the year in Mariposa County, California in 1977, which equaled a write-up in the paper and free stuff for my parents. It also meant that my dad's idea of having me before the new year for the tax write-off did not work. LOL! I do things on MY time, k?

I tag everyone. LOL!

Down Syndrome Awareness Facts

Ok, so I totally lifted this graphic from Christina, who lifted it from Renee, who lifted from someone else. LOL! It's an awesome graphic!

We made it!!! :-)

October is Down Syndrome Awareness Month and Parenting Magazine has been highlighting pictures of kids with Ds. I submitted one of my favorite pictures of Ethan from when he was TWO. That's right folks, Ethan's gone NATIONAL! Click Here to see!

I also encourage you to look through all of the other albums. I know quite a few of those babies from Downsyn. I have even had the privilege to meet some of them in person. Such cool kids, if I do say so myself! Enjoy!

Family Day @ Victory Junction!

Today is the annual Brenner Children's Hospital HEMOC Family Day. It will be held at Victory Junction Gang Camp.


Today, we gather with other HEMOC families to celebrate our children's achievement over cancer. We met at VJGC last year as well. Ethan was able to ride a horse, make arts & crafts, and putt-putt golf. We now have a bowling alley too!

Victory Junction is a fabulous camp. If you are able to volunteer, I highly encourage you to! If you are able to contribute by donating, that is even more fabulous! VJGC is free for all families who attend camp. It is also a member of the Hole in the Wall camps founded by Paul Newman. They are doing amazing work- won't you be a part of it? ;-)

Sleep study ... Never again... I hope!

Ethan had his sleep study last night. The last study Ethan had was when he was in the middle of chemo treatments, accessed to his port, and then add all the wires to him = NO FUN. Plus, Ethan kept pulling the canula out of his nose and they kind of need that to monitor his breathing! Scott was the one to tackle that test and swore that he would never do it again. I now know why for myself.

Thank GOD that I took his arm restraints! You know, I really hate using them, but they are there for a reason. They don't keep Ethan from moving entirely- he can actually still figure out how to bend his arms! As the tech's were trying to glue the electrodes onto his head, he snapped back (while restrained) trying to grab the tech's hand off of his head. Well, the only problem was that he grabbed his own lip instead and ripped a chunk out of his cheek! Oh my goodness, it poured blood. It was awful! The bleeding didn't stop for close to ten minutes. For a minute, we all thought we would have to detour to the ER!

When we finally got him all glued up and ready for bed, this is what he looked like- and, it only took him a little over a minute to zonk out. If only he stayed zonked out!!!



It was a rough night. He would wake up crying, wanting to get to his stomach, but because he couldn't, he immediately tried to rip off the canula and wires. We did this ALL night. My right hip and shoulder were hurting from being in the same position trying to keep Ethan comfortable, but to where I could grab his arms if he started to move. *sigh* The things I have to put him through...bad mommy.

The tech was super nice. He said that he stopped the study at 4:30am when Ethan did manage to unhook a couple of wires. He said that he got enough data by then, so it was ok to stop. He was very nice to allow us to "sleep" until 5:30am! LOL!

Ethan and I got home at 6:15am and immediately went back to bed- in the comfort of my warm, comfy bed. It's 10am now and I am going to take him to school. He's a happy camper. Go figure. Hopefully, he has a better day today than yesterday!!!

Sleep study tonight!

UGH. The thought of it makes me dread going. I did get Ethan's hair cut last night so that it will be easier to get the wires hooked up to him (hopefully!). He woke up around 5am this morning, had Vitalstim, and went to school. I got a bad report when I picked him up. :-(

Ms. Mary said that Ethan had been pinching, pulling hair, swatting, and even attempted to BITE her once! He even pulled his friend, Abby's, hair! I feel so bad- she and her brother, Austin, think the world of Ethan and I just hate that Ethan was mean to Abby. (I AM SO SORRY ABBY!!!)

I think a lot of this behavior was brought on by fatigue. We weren't even out of the parking lot at school when I saw his eyes rolling to fall asleep, to which I yelled "ETHAN, WAKE UP!!! NO NAP TODAY!". Ok, how often are you going to hear me say no nap??? Not very often, that's for sure.

I really need him tired for tonight. The last sleep study he had, the results were "inconclusive". Gotta love that. Here's to better results!

Rock Star

You should all know about my friend, Bethany by now. She owns an online boutique called The Polkadot Platypus. As a fundraiser for her family's adoption cost to bring Addison home, Bethany sold raffle tickets to win $100 from her boutique. I WON!!! I never win anything! LOL!

Well, I tried to donate it back to Bethany, but she wasn't having any part of that. Love her, but man is she stubborn! :-) So, after twisting my arm a bit and forcing me to use my gift certificate, I decided on a few things.

1. Baby legs for Ethan. They are great to wear under pants. I loved the idea of having an extra layer for his legs without interfering with his diaper. LOVE them!

2. Baby K'Tan carrier. I know what you're thinking...Ethan is too big for one of those. And no, we are not announcing anything smaller than Ethan to fit in the carrier! Sometimes, when Ethan will not walk, he will become floppy AND heavy. The Baby K'Tan is strong and basically adds a little extra support under Ethan's booty if I need to carry him on my hip. He hates it so far, but I will keep trying.

3. A rock star shirt. It is a simple black, long-sleeved shirt with the word ROCK and then a star underneath it. I got this stuff over the summer, so I have been waiting to be able to have Ethan wear his rock star shirt! Well, he looks great and he got SO many compliments! He IS a little rock star!!!



Thank you Bethany for all the goods!!! We are praying that you will have Addison here in the US before you know it!

October is Down Syndrome Awareness Month!

Unringing the Bell is hosting the 2nd annual 31 for 21 blog challenge. I did not get to participate in it last year because I didn't know about it until close to the end of the month. My blogging habits were still sporadic and I just wasn't sure I would have enough to talk about. The challenge will be to blog for all 31 days of October. I will have to figure out how to schedule a post pretty soon since I leave for Africa in a week! My internet access over yonder will be extremely limited.

Anywho, I have lots to say TODAY, but I will try and break it up so I don't lose steam for the entire 31 days! LOL!

Happy Birthday, Kim!!!

I would like to wish my (older- hehe!) sister a very happy birthday today! Isn't she pretty? In honor of Kim's, eh hem, Kimberly's, birthday, below are the book covers to all of her books! If you hurry, you should still be able to pick up her latest, "An Imperfect Match". I do believe that you can also purchase her books on Amazon. Hint, hint- wink, wink- nudge, nudge...

Eat @ Chili's Tonight!

All day today, Chili's will be donating 100% off all proceeds to St. Jude's Children's Research Hospital!!! Ethan was not treated at St. Jude's, but the work that is being done there is truly remarkable! While Ethan is in remission, he is NOT cured. He only has 80% chance that his leukemia will never return. Sounds like a good odd, right? Well, I think that 100% is much better!

Come out to support the cause! We will ALL celebrate when pediatric cancer has been rid from this earth! Wanna create a pepper? Click here! If you create a pepper in Ethan's honor, let me know so I can post it here! Thanks!


From Ethan's Aunt Kamrin

















From my friend, Christina
















From my friend, Kimberly

















From Ethan's Gramma

What's one more challenge?

Today, we met with "The Wizard". Long story short, Ethan now has another diagnosis...PDD-NOS. Click on the link to learn all about it, but yes- it is a form of autism.

I am crushed, heartbroken, and angry- among other things. When does this beautiful boy of ours just get to be a kid? Where does this leave our family? Will we never have more children? Will Ethan EVER communicate effectively? Too many questions, too many emotions. All of this on the heels of the tethered cord diagnosis (Neurosurgeon consult 10/20). I'm spent.

*sigh* I guess I just need to sit back and just remember that this does not change who Ethan is. He is still my son, my baby, who I love more than life itself. I know that God won't give us more than we can handle, but really- could He quit trusting us so much already!

FIREPROOF

Yesterday, Scott and I were blessed. Our church-
River Oaks Community Church arranged to reserve an entire movie theatre showing the movie, "Fireproof". The church provided childcare so that any couple could attend the movie.

We knew that the movie would have an obvious Christian storyline. Kirk Cameron is the star of the film, and I think most people know that he is pretty vocal about his love for Christ. While the acting was not Oscar worthy by any means, it did pick up and there were some "definite get your tissues" ready moments. The movie is funny, while acknowledging the struggles that so many married couples face and the pit of despair that they fall into that leads to separation and/or divorce.

Marriage is work. Our likes change. Our personalities may even change. Nobody ever said that marriage would be easy or without conflict or struggles. But, when you make it a point to realize that you cannot do it alone- you need God's love in your marriage too, you CAN make it work.

It may seem cheesy to some of you, but seriously, watch the movie. Whether you have a blissfully happy marriage or a marriage teetering on breaking, see the movie. Reconnect with your spouse. Look into their eyes as if it were your wedding day and you are getting ready to exchange your vows. Don't get too wrapped up in life to forget about those who mean the most to you. Lean on God when times get tough. With prayer and work, He will see you through it.

Kennedy-Brownback Bill

FOR IMMEDIATE RELEASE

The Down Syndrome Community Celebrates an Important Victory
Congress Passes the Kennedy-Brownback Prenatally and Postnatally Diagnosed Conditions Awareness Act

New York, NY (September 26, 2008). After three years of advocacy, the U.S. Senate and the U.S. House of Representatives passed S. 1810, the Prenatally and Postnatally Diagnosis Conditions Awareness Act, during this last week before Congress adjourns . The legislation has been an extremely high priority for the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC). These organizations and individuals with Down syndrome and their families across the country are convinced there is a need for physicians and other health professionals to provide parents who receive a prenatal or postnatal diagnosis with updated, evidenced-based information about Down syndrome.

U.S. Senators Edward Kennedy (D-MA) and Sam Brownback (R-KS), original co-sponsors of the bill, came together to pass S. 1810. The bill passed the Senate by unanimous consent on September 23rd and passed the House by a voice vote on September 25th.

The Prenatally and Postnatally Diagnosed Conditions Awareness Act ensures that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will be more likely to receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options . It offers referrals to support services such as hotlines, Web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The information that is all too often being provided in these situations is out-dated and inaccurate. The treatment options, functional development, opportunities and accomplishments of individuals with Down syndrome have improved dramatically over the years, yet decades old stereotypes still persist. It is critically important for healthcare professionals, families and society to update their knowledge and their perceptions about individuals with Down syndrome.

NDSS, NDSC and affiliate groups across the country, have worked for almost three years to bring the bill to passage. J. David Hoppe, NDSS Governmental Affairs Committee Chair, worked tirelessly with Members of Congress to ensure the bill would be considered despite competing time demands in Congress. "With one small eight-page statute we have the power to brighten the future for people with Down syndrome and their families, by breaking stereotypes and dispelling myths", states Hoppe.

NDSC and NDSS and appreciate the hard work of the Members of Congress who championed the bill in the Senate and the House of Representatives-Senators Edward Kennedy and Sam Brownback, Congressmen James Sensenbrenner and Tim Ryan.

Other members of Congress who provided invaluable assistance and support- Senator Harry Reid, Speaker Nancy Pelosi, Majority Leader Steny Hoyer, Senator Mitch McConnell, Congressman James Clyburn, Minority Leader John Boehner, Congressman Roy Blunt, Congressman John Dingell, Congressman Joe Barton, Senator Jon Kyl, Congressman Pete Sessions and Congresswoman Cathy McMorris Rodgers.

NDSS and NDSC would like to thank the members of the Trisomy 18 Foundation and their leadership who were diligent and stalwart supporters in the effort to pass the bill.

NDSC and NDSS would also like to thank their affiliates and the thousands of individuals with Down syndrome, parents, families and friends who have worked tirelessly during the three-year effort to pass the legislation.

About NDSS
The National Down Syndrome Society is a nonprofit organization with more than 250 affiliates nationwide representing the more than 400,000 Americans who have this genetic condition. NDSS is committed to being the national leader in supporting and enhancing the quality of life, and realizing the potential of all people with Down syndrome. We demonstrate this commitment through our education, research and advocacy initiatives that benefit people with Down syndrome and their families. To learn more visit our new website www.ndss.org.

About NDSC
The National Down Syndrome Congress is America's oldest national organization of individuals with Down syndrome, their families, friends and the professionals who work with them. NDSC works to promote equal rights and opportunities for individuals with Down syndrome through advocacy, information and education. The NDSC also hosts the world's largest annual gathering of teens and adults with Down syndrome, as well as parents and professionals. For more information, please visit www.ndsccenter.org.

Buddy Walk Awareness on Today Show

While I hate that Meredith Viera and Ann Curry kept saying "Down child", John C. McGinley (from Scrubs) has always been a fabulous advocate for our kids and he always beams when he speaks of his son, Max (11, Ds).

Our local Buddy Walk is tomorrow! It is supposed to be cold and rainy, so we are still hoping for a good turnout!!!