My First Q & A... should be short.

Do you need to do bloodwork?
Well, we do bloodwork all the time to make sure his leukemia is still in check. But, we also did another round to check his thyroid, liver, and some other levels. Everything was normal except that his testosterone was low, but the endocrinologist says that it was fine for his age.

What does the doctor think?
Who knows. This is a doctor that I rarely like. I hate her bedside manner. This past appointment, she looked at me and said "Do I need to be here? Can "D" take care of everything for you?" It just really ticked me off. Anyway, "D" has this theory that he is gearing up for a huge growth spurt. I happen to think that theory is grasping at straws. I think that we need to do another sleep study...especially after going to Boston. We shall see.

Is he on supplements?
No. But, I would like more information please. Thank you, Bethany!

See, I said that would be short. LOL!

Still not growing

I took Ethan in to the developmental pediatrician yesterday to do a weight/height check. Ethan has gained a couple of pounds over the past few months, but has only grown .4 of a centimeter! ***eye roll*** They don't know why Ethan is not growing. I have a few ideas, but we will have to wait for those tests to be ordered. I mean, Ethan does not come from a short family. Mine especially! If anything, he should be on the taller end of the Down syndrome growth chart, instead he is in the 5th percentile!!!

On another note, Ethan's new AFO's came in on Tuesday. He is adjusting to them quite well! He walked, one-handed, in to the doctor's office yesterday and they were all very impressed with his improvement!

After the appointment, I took Ethan to a birthday party. He had a good time, especially since he got to see his favorite Ms. Mary! He really misses her since school has been out. I am sure that after all the therapies and appointments that I have been dragging him to all summer, he will be more than ready to return to school!!!

Tagged again! :-)

My friend, Alyssa, over at What's Happenin' at the Hoover's tagged me a LONG time ago to do this and I forgot. Sorry Alyssa! Ok, so she says that I need to list 6 things about ME.

1. I have man hands & feet
2. I am the "white sheep" of my family. Only blonde hair/blue eyed child out of 4.
3. I do not tan, therefore, I do not attempt to.
4. I want another baby.
5. I love pineapple even though it makes my tongue swell.
6. I used to have a chipped front tooth. My older sister, Kim, was making me laugh while our parents fixed a flat tire and I dropped my head- mouth wide open- into the front door window that I did not realize was open. An unforgettable moment for sure.

Again, not good at the tagging...feel free to list 6 things about yourself on your blog and let me know! :-)

I've been tagged!

My dear friend, Christina, over at Kwisteena's Kwaziness tagged me to list 6 things that describe my life. Like her, I am not sure 6 is enough! Let's give it a whirl...

1. Blessed
2. Stressed
3. Random
4. Giving
5. Busy
6. Full of change

I am going to break the rules and not tag anyone because I am not good at that. SORRY. BUT, if you so desire, please do this yourself on your blog and let me know about it! :-)

Five Guys vs. In-N-Out

VS.











No question. I would probably take Five Guys' fries over In-N-Out's, but not the burger. FG's burger was better than most, but it will not take away my I-N-O cravings that only a trip home to California can fix.

Africa

Some of you may have gotten an e-mail from me. It went out in masses. :-) If you did, welcome to the repeat version for those who didn't get my e-mail. Of course, this version will be much shorter...maybe.

I have joined the missions team to travel to Kitale, Kenya, Africa in October. If you know me, your jaw is probably on the floor right now. Believe me, my own jaw was on the floor! But, I truly believe that God is calling me to work in Africa during this trip. I can not tell you all the "signs" that I have been given. I have been given amazing support already- I am truly in awe of how God is providing.

So, I will be traveling October 8-18. I will spend my 10th wedding anniversary on a plane. It took me a long time to commit to the trip even though I knew in my heart that I was going- God told me so. We will be going to the Challenge Farm in Kitale, Kenya. I highly encourage you to visit the website and watch the video at the top of the page.

I will be raising money from now until the trip- hopefully having my full amount in a while before we leave. You will notice a ChipIn link on the side. If you wish to sponsor me, THANK YOU! You can do so a few different ways.

* You can use the secure ChipIn site and $ will go directly to my paypal account
* You can send a check directly to my church (with my name- Kristen Faulkner- in the memo): River Oaks Community Church, 1855 Lewisville Clemmons Rd., Clemmons, NC 27012 {Phone: (336) 766-0033}

Money sent directly to the church is actually how I would suggest because it is tax-deductible and will be receipted. I can send you a receipt, but I am not sure if the IRS would accept it as a deduction. I will have to check on that...

Lastly, more than anything...PRAY, PRAY, PRAY for myself, the team, our families, and for those already living on the farm. This is, by far, the most important request. Thank you so much for everyone's support. Much love to all.

More fires in Mariposa

I saw a news clip on CNN or something like that saying that there was a fire near Yosemite. Now, that is a pretty large scale of where exactly the fire could be, but sure enough, it's in Mariposa again. This time, it's not near my parent's house, but my grandparents house. The fire has 0% containment and over 16000 (that's a jump from the original 1000 that I read) acres burned. Lots of people have been evacuated already. Please keep everyone around the fires in your prayers, including the firefighters who brave the flames.

http://cbs13.com/local/mariposa.county.fire.2.780798.html

Dr. Randy Pausch

Passed away today. An amazing and inspirational man. His "Last Lecture" is well worth the watch.

My lil' nudist

This morning, I woke up to the most beautiful sound of giggles. I come around the corner to Ethan's room, and I find him standing at his gate all proud of himself and his nakedness! He has always loved not having clothes on, but this is a first! Actually taking off the diaper...oh my goodness!

If I had never...

If I had never worked for Bank of America, I would have never applied at Patelco.
If I had never worked for Patelco, I would have never met Theresa.
If I had never met Theresa, I would not have known of TSCS in NC.
If I had never known of TSCS in NC, I would never have moved.
If I had never moved, I would have never attended the NDSC conference in Atlanta.
If I had never attended the NDSC conference in Atlanta, I would have never found out about Downsyn.
If I had never found out about Downsyn, I would not have the support of so many across the country!
If I had never found out about Downsyn, I would not have some of my best friends for life.


If I had never had Ethan, I would not have moved.
If I had never moved, I would not be blessed with how God has utilized me with others.
If I had never moved, I would have never met Karen and Olivia. I feel a part of my heart would have always been empty if I had never been able to love Miss O.

If I had never had Ethan, my heart may not be as full of compassion as it is.
If I had never had Ethan, I may not have become the advocate that I am.
If I had never had Ethan, I may not have ever known what a hero really is.

Someone very close to me once told me that I had depressing friends. On the contrary. I have awesome, amazing, strong friends. They are Mothers who never back down from a fight. They are Mothers who do not see the disability in their child, but their ABILITY and CAPABILITY. I am honored to have the friends I do. I hope that I am as good a friend to them as they are to me.

Therapy & Tests to come

Today was Ethan's last round of VitalStim therapy...we hope. He will have a modified swallow study on Friday to see if it worked.

Ethan's private PT has been going well and he will start private OT next week. He is going to HATE me by the end of this summer!!!

E also had a GI appointment yesterday and he will take part in an overnight study to measure the correlation between weakened swallow function and reflux. I do not feel that Ethan's reflux is under control right now and he's on max meds. The study consists of an endoscopy, PH probe, stomach emptying, and another test that measures the strength of the swallow down the esophagus. Fun times. I don't know when this study will be quite yet, but hopefully soon.

Ethan also needs another sleep study and a full neurological/orthopedist workup. This comes from advise given from two of the most well-renowned physician's who work with persons with Ds. Fun times.

Sayreville, NJ

I just noticed that someone in Sayreville, New Jersey is visiting my blog. Jon Bon Jovi is from Sayreville. Hmmmm...ok, Jon. I am here, waiting for your call. ;-)

Back from Boston

Ok, well I have been home from Boston since Sunday night, but I just haven't had the time or energy to post! My friend, Lisa, and I left on Thursday afternoon for Raleigh. We would have about an hour to deplane, get to the hotel, and move on to the Garden for Bon Jovi. Well, we had an amazing trip up and ended up landing 20 minutes early!!! I had the flight attendant thank the pilot for me- I did have a date with JBJ after all!

The concert was fabulous! Bon Jovi really can't do any wrong- except when JBJ goes out into a section of the audience and lets others fondle him all while having total disregard for how that makes me feel! LOL!



The return back to the hotel was a bit of an adventure. Let's just say that jails should not have full length windows so men can do things where you can see and that $11 cab fare is not that bad! We tried to save money, saw things that we shouldn't have, experienced the subway system, and got back to the hotel an hour and half after we left the Garden. Fun times. HAHA.

Boston is absolutely beautiful! I loved it! It is a very clean city with friendly people. The history there is awesome too. I was able to go out on a Charles River boat tour with some of my friends from Downsyn and saw Harvard, Boston University, and MIT. The harbor is pretty too. I met my step-grandmother and step-aunt while there too. They live about 20 minutes outside of the city and came in to take me to dinner. It was a such a treat for me to be able to spend that time with them and finally meet my dad's sister, Robin. I may have asked too many questions, but it was my one chance to find out more about my dad since he never shares, nor seems to care to want to. I wish that I had just one more day to actually do some sightseeing, but I was there for the NDSC conference.

I came away with some great information and even greater friends! I "talk" to some of these friends all the time online and then to be able to actually meet them and have a great time was just the added bonus!


Bye-bye Boston! I hope to see you again soon! LOL! I miss all my Downsyn friends already! Why does the US have to be so large??? :-(

The view from my hotel room:





I could not stop taking pictures from the air! It was all so beautiful!

Things to ponder

Yesterday, I stopped by Olivia's pediatrician's office to say hello. Weird? Not so much when we were in a very close position a few months back. If she were accepting new patients, I would likely switch Ethan over! She is amazing. Anywho, when I got to the office, I told the receptionist that I would like to say hello to Dr. Heinrich. She asked me who I was and I just said, "Just tell her that Nurse One is here". She said, oookkkk. Like, whatever. Well, within a minute, Dr. H was out in the lobby giving me and Ethan a big hug. We visited for a few minutes and she then again asked me if I was going to nursing school. Dr. H was a driving force behind me thinking about applying the last time. She offered me recommendations and everything. Now, she thinks that I should just go to PA school! WHAT!?!? WOW! I am not sure about that one, but you never know. But, she did say that she would help me with answers for tests. That would be awesome! We'll see...pondering.

After we left Dr. H's office, we went to Sam's Club. Karen called me and said, "Where ya goin'?". She was behind me! Too funny. She has been very sick this week and had to go get her allergy shot. I told her to go home and go back to bed- I would check on her later.

Ethan and I met my friend for lunch. Her mother, sister, son, and niece also joined at the every so scrumptious Olive Garden. As we were close to wrapping up lunch, I look across the dining area to see a woman leaning over in her chair with her head resting on her knees. She was alone. Something was wrong and no one was helping her. I asked my friend to watch Ethan for me and I went over to help the woman. She was feeling faint and was sweaty/clammy all over. She had just had some blood drawn and was told by the doctor that she was dehydrated. So, I think that she was anemic, dehydrated, or had low blood sugar (she hadn't eaten yet)- or a combo of the three. The manager got me some orange juice to give her and a cold towel to put around her neck. She was on her knees on the floor by this time with her head down still, so I was lifting her chin enough to get the oj in her. I also continued to fan her with a folder that she had. She ended up being fine after a little TLC. Numerous people came up to me and asked me if I was her nurse (LOL)- um, no. Just someone enjoying some soup, salad and breadsticks!

My bill came and I paid with cash. The manager came back up to me and said that he would like to take care of my lunch to thank me for being a good samaritan. Aw. I about cried. There are still rewards for good deeds- even though that is not why we should do good deeds.

Belated Birthdays!

Happy belated birthday to my friend, Darlene!!! We are exactly 6 months apart- her birthday was July 2nd and mine is January 2nd. So, really- happy belated HALF birthday to ME! LOL! I tried to call the girl, but she is too busy for me anymore...sad, sad. J/K...She recently opened her own boutique in Atwater and it is going very well. I love you Dar Dar.

Happy belated birthday to my little cousin who I have always called my neice, Mallory Jordan!!! Hi honey. I am sorry that I didn't get to call you the other day. We have been VERY busy. We love you and hope that you had a wonderful birthday!!! *muah*

Happy belated birthday to my Aunt Bitsy yesterday!!! I also believe that my cousin's little girl, Keira, celebrated her birthday yesterday too! Birthdays, birthdays everywhere!!!

I know my Aunt Shell was at the end of June too! Uncle Cobb is at the end of July. Happy birthday to all. WE LOVE YOU!!! *****CORRECTION: Aunt Shell's b-day is the end of July and Uncle Cobb's is the end of August. They are the same age for one month. I just had them a month off---my bad!*****

Upcoming: Yvonne, July 6 HAPPY BIRTHDAY!!!
Jen, July 7 HAPPY BIRTHDAY!!! (I am hoping that she can come to Boston next week to see me!!! Hoping, hoping, hoping!)

Ok, now I am probably forgetting someone ultra-important. SORRY if I am!!! *muah*

Happy 4th of July!

Have a great 4th of July!!! We are going over to Theresa's later to bbq and then we are off to the Lewisville fireworks show.

The Oliver Fire

There is a major fire right by my parents house in Ponderosa Basin (Mariposa). They have been on pre-evac orders since Monday and 15 minute warning since Wednesday. I talked with Kamrin the other morning as I woke her up and she said that it was just really smoky- she even dreamt of smelling smoke! This is not just over the mountain for my parents- it is in the back yard, so to speak. Please pray for my parents home as well as their neighbors and the firefighters that are working so hard to contain the fire. I think that the firefighters pretty much have it under control now. I haven't heard anything new from my mom and the news hasn't updated since Tuesday.

As I searched the internet and Fresno news the other day, I found a video.

Who are the first people that I see??? Yep, that would be my parents! Mommy never passes up a good opportunity for interview!!! LOL!

Click here to see (Click on the "Watch the Video" link within the article)

Ok, for whatever reason, the link won't work... here it is: http://www. ksee24. com/news/local/20705934. html

NYC

I know it's been a while. I haven't felt like writing. I went to NYC last week to help out my friend. Her son had phase I out of III brain surgery. I was not there to see the city, I was there for my friend. But, I was able to see some of the city- ok all technically, from the top of the Empire State Building. I probably could have stayed up there all day. I love things like that! I could spend hours up at the Space Needle too, even though I have been up there numerous times.

I was able to meet up with a couple of Downsyn friends. Sara brought her two girls to the ESB and we were able to visit there. I met up with Maureen in the city on Friday and we walked to dinner at California Pizza. Yes, this California girl had never had California Pizza before- I had to go to New York for it! Boy, was it yummy though!!! After a bottle of wine and LOTS of good food, we came back outside to rain. So, we walked back to Maureen's office and grabbed some umbrellas only to find the rain had stopped by the time we left the building. Go figure.

Maureen and I talked for a long time, even after we reached the hospital/apartment entrance again. I felt so bad that she left me after 2 am to walk by herself back up to Penn Station. It's a good 25 minute walk in the middle of the night alone. Really though, I never felt like I wasn't safe. I don't know if things have changed post 9/11, but I found the city to be clean and (mostly) friendly. It's a bit faster paced than what I am used to, but I could certainly get used to it. This mountain girl is adaptable! LOL!

Saturday, Maureen had invited me out to her home on Long Island. She also offered to take me to the airport. That saved me quite a bit of money on cab fare Sunday. I hated to leave my friend and her family, especially because of the circumstances. But, everyone would be so proud of me! I hailed a taxi like a pro! I got on the LIRR (Long Island Rail Road) all by myself! I fought with a deli man and held my own. (NO SOUP FOR YOU!!!) I found that the movie scenes with a whole bunch of mom's at a city park talking about if there infant is on the waiting list for such and such preschool is TRUE! No lie. I took the kids out one day and found a nice park for the kids to play at. No dads. Only moms and nannies.

I did get a few pictures, but my camera's sensor is going out and there are a bunch of lines going through them. That ticks me off, but I really can't afford to get a new one. I am really going to have to figure something out before Boston in a couple of weeks though!!!

Before I end this, I have to share the coolest part of my NYC trip. After "F" was out of surgery and moved to the PICU, I went in to visit. The PICU at NYU is four beds to a room. I looked around for a minute and I see two stickers on his cabinet door...Cinderella and Belle- Olivia's favorite Disney princesses! OLIVIA WAS WITH US IN P3!!! Coincidence? I think not.

Grammar Grrrr's

Ok, I do not proclaim to be an English guru or anything, but there are a few things that just make me cringe. I may add to this over time, but here it goes...

YOU'RE = YOU ARE (You're driving me crazy!)
YOUR = YOUR (Your shirt is blue.)

LOOSE = LOOSE, like GOOSE (I am wearing LOOSE clothing.)
LOSE = LOSE, like OOZE (We are not going to LOSE the game today.)

When people title pictures as xxxx and I. I guess this rule depends on what school you went to because my teachers always taught me that "I" is only used when it can be used alone. You don't say "this is I", you say, "this is me". So, I naturally think that those pictures should say Me and Ethan or Ethan and Me because either one is fine alone. I had submitted a picture of Ethan and me to a lady putting together an online photo album for Mother's Day last year. I had titled it "Ethan and Me at the Buddy Walk". When I saw the picture, the label had changed to "Ethan and I". (eeeeekkk) I wrote the lady and kindly asked her to change it back, she refused and instead sent me links to why her way was proper and then proceeded to remove the picture from her album altogether. Quite rude actually. Anyway, this one is still debatable I suppose. Amazing what you remember from school 20 years ago.

Vent over...for now.

Emotions

Ethan had VitalStim Therapy today. He had a different therapist today and he didn't like that very much. Because our SLP is on vacation, we were squeezed into another slot with another SLP. She is very nice. She is firm with Ethan- which he totally hated. Anyway, because we were squeezed in, the therapist actually had two other children to do therapy with while we were. They were sweet children. One was a little girl with chunkamunk legs and chubby cheeks. The other was the most adorable little boy who blew me kisses from the moment he came into the room. Both of them had trachs. Olivia had a trach.

Now, I have seen other children with trach's since Olivia's passing. I don't know what was different about today. The little girl got so upset over something and she had to be suctioned. I had to bow my head down to the side as the tears started flowing down my face and yet I didn't want anyone to see. Hearing the sound, seeing the catheter- part of me wanted to help. It was a huge honor to me when Karen taught me how to suction Olivia's trach. That is not something that she just taught anyone to do. And, I hate necks. It was an adjustment initially to see Livvie with the trach, but because it helped her, I learned to not let it bother me. I would do anything for Olivia. I just can't tell you how much I love that little girl.

Please continue to pray for Karen. Occurances like this happen all the time for Karen. There are reminders everywhere that Olivia is not here physically anymore. Even though my heart is broken along with so many others who had the privilege of knowing and loving Princess O, it will never compare to the broken heart of Karen and Weldon.

Just for fun...

Another thefted idea from Christina over at Kwisteena's Kraziness. I can't come up with these things on my own.

Answer the following questions:

What is your first name? Kristen

What is your favorite food? pasta

Where did you go to high school? Mariposa County High School

What is your celebrity crush? Johnny Depp

What is your favorite drink? Iced tea

What is your dream vacation? Fiji

What is your favorite dessert? Cheesecake

What do you want to do when you grow up? Mommy

What do you love most in life? Life

One word to describe you. Nurturing

What is your favorite flower? Tulip

What is your favorite fast food place? In-n-Out

Now, go to Flickr and put your answers in the search engine. Choose one picture from the first page, copy the URL and then put it in the mosaic maker here. Here is my mosaic creation:

My Family

I saw this on Renee and Christina's blogs. I am a copycat. LOL!

Create your own family sticker graphic at pYzam.com

Bad Mommy!

On Friday and Saturday night, I had the pleasure of caring for a beautiful little 5-month old little girl with Down syndrome named Elizabeth. Her parents got in touch with our local Ds support group asking for a babysitter while they were in a wedding. I, of course, responded. :-) You know I never back down from a chance to snuggle with babies if I have the chance!!!

Well, I had to take Ethan with me on Friday night because Scott was networking at the downtown gallery hop. Ethan did not nap Friday (big mistake) and he was Mr. Crabbutt once we got to the family's hotel room. Elizabeth was tired from her day of meeting loved ones and off nap schedule so we snuggled on the chair/ottoman combo when she fell asleep. Ethan did NOT like Mommy snuggling Elizabeth! I told him that Mommy could hold him too, so he climbed up with us and immediately tried to take Elizabeth down! Seriously, Ethan went psycho-baby on me. He tried to grab her, pinch her, pull her off of me...It made him even more mad that Mommy was not letting any of that happen! And, Mommy put him back on the floor after that behavior. Bad Mommy!

Ethan gave me attitude all day Saturday as well. Boy, does that kid hold a grudge! I would have to say that he gets that from Gramma. (Yes, Mommy- I just called you out! LOL!) Today, he was a little better with me, but not by much. He was much happier with Scott today. Scott does not snuggle with other babies, whereas Mommy goes to hotels to watch little princesses and takes care of the babies in the nursery at church. Bad Mommy!

Thanks to Evelyn & Christian for trusting me to care for Elizabeth- what a joy!!! It was my pleasure. Let me know if you are ever back in this area and I will be sure to look you up if I am in yours!!!

Much love to all!

Brags & Ramblings

Yesterday's Vitalstim session went really well! Ethan even tolerated some oral motor exercises! Today, he was just feisty. He tried to rip off the tape and stickers numerous times, so we had to put on the arm restraints. :-( I hate that. Our sessions are done for the week and hopefully next week just gets better!

Surprisingly, Ethan took 8-10 unassisted steps on Monday too!!! Yes, that's what I said. He was so happy doing it too. If I wasn't the one he is walking to, I would be taking some video. I will work on that. I am so proud of him! He has come so far this year.

I am feeling better but still icky if that makes any sense at all. I coughed so much the other day while visiting with Karen that she insisted on giving me an albuterol breathing treatment and sending it home with me. I will be using it again soon.

Karen and I went up to Olivia's gravesite on Monday. Karen had new flowers to place. It really is still so unreal that Olivia is gone. I look around Karen's house and just keep waiting for Olivia to come home. Even being at her gravesite, looking at her headstone and footstone, I am in denial that she is there. We buried her there. No, that was a bad dream. We really didn't bury this beautiful 8 year old princess, did we? See- denial. I told Karen that these emotions that I have are not ones that I can usually express to anyone. She asked me why not. The truth is that Olivia's passing took a major toll on me. I loved her instantly and I cared for her as if she were my own. Of course, my grief will never compare to Karen's, but it is still something that takes over me some days. People don't understand how I can have such a connection to a child that wasn't my own. I should be "over it" by now. Well, I am not over it and I don't know if I ever will be. I know that she is in a better place and I know that I will see her again, but the fact that she is gone is still so heartbreaking.

Vitalstim Therapy

Today was Ethan's first session. He hated it. I started to cry with him at first because it was so awful. He scratched his neck so fast as soon as it was turned on so he could tear the probes and tape off, but he eventually was just plain ol' mad. He went for a full 45 minutes today without any oral motor exercises. Tomorrow, we go longer WITH oral motor exercises. Wish us luck! Only 19 more sessions to go!!!

MTV Movie Awards

Ok, anyone who really knows me knows that I love Johnny Depp in Pirates of the Caribbean. I had always liked him and thought he was good looking, but since Pirates, he is now at the top of "my list". He came onstage of the MTV Movie Awards tonight and I think I panted like a teenage girl. I would like to thank God for creating such a beautiful man. Darn, he looks good! He was back to his 21 Jump Street look. Yummy.

Cards from Students for Pennies for Patients

Ethan was selected as an honored hero for the Leukemia & Lymphoma Society's Pennies for Patients Campaign for this past school year. I have received a few packets in the mail with letters from students wishing Ethan well. Yesterday, I got a package with a stack of hand-made cards from, what appears to be, 2nd graders- maybe. I wanted to post what they wrote.

Get well soon Ethan, Dear Ethan, I hope you get well soon and I wish you the best and I will keep you in my prayers. From: Antwan

Get Well Soon! I hope you get well soon. From: Kaylee

To Ethan:
From: Tyler
Ethan I hope you get well. Get well soon Ethan. Get well soon Ethan. We are colleting money for you Ethan. I hope you get well soon.

To: Ethan
I know life is touf but you will live throught it. I love riding in my wagon to. You ride safe on your wagon.

To: Ethan
From: Alex
Hope you get to filling better. You like to make others smile. Well I can't wait tell you smile because you got better.

Ethan
Dear Ethan, I fell so sorry for you . My name is Makenzie. I like to play the piano and swimming too.
From: Makenzie

To: Ethan
From: Sam
I hope you feel better soon. So you can do the things you like to do more often. I know you will. Don't worry.

Ethan
Hi Ethan, My name is Morgan and I live in C*****ville, NC. I got to ********* school. I hope you get well!
From: Morgan

To: Ethan
Dear, Ethan I feel very sorry for you because of your cancer. It's amazing you know how to play the piano.
From: A.J.

Ethan
I am sorry for what you have. I will pray for you to get better. Continue to play the piano and have a lot of fun playing it too. Swim and have fun too. I hope you get better.

Get Well Soon! Thinking of You.
Dear Ethan,
I love to smile too. I was thinking about taking piano lessons but my mom never did put me in it. I hope you know I am thinking of you. Hope you feel better soon.
From: Ranlyn

To: Ethan
From: Andrew
Hope you feel better and get well soon. Dear Ethan, I hope you get well soon. Get well soon. Get well soon. Get well soon.

From: Rex
Dear Ethen I hope you get well. Than have a good life. Get well.

Get well soon Ethan. I wish you the best.
From: Joey

I hope you get well soon. One day when your out of the hospital to go to school tell your friends on what happened.
From: Nathaniel

To Ethern
Get better from your cancer so you can continue to get better.
From: Devonta Get better

Get well soon Ethan. I hope you can fight the kansar Ethan. Dear Ethan, I hope you get well Ethan because I would ready like to meet you. I read about you and what you like to do. You seem like a very nice kid. I love to play with cars and play a piano. Get well soon.
Sincerely, Manny

Hi Ethan. You watching t.v? Turn it off cause I got you a card!! :-) :-)
Do you miss outside... ...well were giving penies so you can come outside more! So say hi to your swim suit! Here's what I'm giving... God loves you and will never let go!

Get well soon Ethan!
Dear Ethan I hope you get better and play the pino and siwm and swing agin. Get well soon.
Yours sencerly, Brody

Get well soon.
To: Ethan
From: Aaron
Get Well Soon.

Ethan Your A Star. Get well soon Etan.
From: Joscelyn

Ok, now how sweet are those!?!? If my scanner was better, I would scan all of them. Some of the drawings are fabulous! Lots of them have swings, piano's, and wagons because Ethan's poster says "My name is Ethan and I am 6 years old. I was diagnosed with Acute Lymphoblastic Leukemia on February 13, 2004. I completed treatment in September of 2006 and I am currently in remission! I enjoy swimming, dancing, playing the piano and riding in my wagon and swinging! I also love to laugh and make others smile".



The one about watching TV has to be my favorite. The drawings are great and it was so imaginative. I left in the spelling errors on purpose because I find them to be as innocent as their heartfelt cards. These are so special. Thank you to all the children who wished Ethan well! You're the best!

Sinus Infections Suck

And, it's kicking MY BUTT! It all started with some drainage and laryngitis a couple of weeks ago, but I felt fine. Fast forward to now- I am completely full of gunk and my head and ears are about to explode in between the coughing spells. I know it is a sinus infection- I have had too many to count. Now, I am just trying to fix it on my own. My friend, Heather, gave me a Neti pot to use...I think it's working, but it has made things worse in order to make them better. :-(

Happy Birthday, Ethan!!!

Ethan,
Today, you turn 7 years old! Where did the time go? There is just something about seven that seems like such a big boy age...next thing we know, you will be TEN! You had rockin' hair today and an attitude to match! No one will ever be able to hold you back. You do things on your own timing and when we all figure out that that's ok, then you are going to soar higher than you already do. You make me proud everyday, even when I may not tell you. You are an amazing boy and I am incredibly honored to be your Mommy. Love you forever. ~Momma

Today has been fairly quiet. Ethan and I went to church, came home for lunch, and he snuggled up to me to nap. I love our naptime. Call me lazy if you want, but I cherish our cuddle time. Today, I didn't even sleep; I just watched Ethan sleep. I reminisced of when he was born and how far he has come. He really is an amazing boy. He has overcome and survived so much. We need to remember that more when the days of frustration overcome the reality that he is still here with us. Keep fighting, Ethan because that way I know that you are strong and nothing will keep you down! (no pun intended) :-) I think that we will take Ethan for an ice cream dinner or something. I remember that my parents would let us have banana splits for dinner once a year...I think it's a tradition that I plan to continue.

I have been fighting allergies/sinus/cold whatever you want to call it for going on a couple of weeks. I do believe that I just blew my nose into a spell of vertigo. My ears went into a fog and I felt like I was going to pass out from the spinning. It was bad. My ears are trying to open up now and the spinning has tapered off. Thank God!

Have a great Memorial Day Weekend everyone and don't forget to pay respect to those who have fought for our country and gave their lives doing it.

Walking Inspiration

Ethan stopped having any desire to walk a few weeks ago. We have had our hands up in the air not knowing what to do or why he suddenly has the lack of desire to walk. Well, today- we found his inspiration! Enjoy!


Walking Inspiration

Now what?

I ran into Ethan's ENT yesterday and he does NOT think that Ethan's recent behavior change is due to the ear tubes. Grrrrr, Grrrrr, and more GRRRRRRRR!!! I have so many different doctors/therapists telling me that this MEDICAL CHANGE has really affected Ethan. That medical change would be the tubes! I feel like we are going in circles and grasping at straws. We have an actual appointment tomorrow with the ENT, so expect us to be discussing this in detail!

On a better note, Ethan seems to be doing a tad better with things. He has been giggly and happy in the morning, which I love, of course! We are just kind of taking things very slow right now. I was feeding him breakfast this morning and after a few bites, HE went to grab the spoon to self-feed assisted. That is a big step! We will take it! So, yes- we have started over basically, but he's getting there again.

Kids Eat Clinic

Yesterday, Ethan's teacher accompanied me and Ethan to his feeding clinic appointment at 4pm. We didn't leave until after 6pm. We covered lots of ground. Here's how it went down...

Ethan refused to sit in the regular chair, so he had to then sit in the modified seat with tray. When it came time to eat, he pushed the food away and also tried to grab the plate and throw it. He also immediately went hand first into the tastefully crafted butterscotch pudding and proceeded to- finger by finger- remove said pudding into his mouth. Mary and I had hoped that maybe he would showoff and begin to self-feed again...nope. There will not be any self-feeding any time soon, unless he decides to.

The ear tubes have really thrown him for a loop. It has affected his senses as a whole, his equilibrium, his swallowing, his desire to self-feed...but by golly, there isn't any fluid in there! Yes, I am rolling my eyes because if it's not one thing, it's another. We have to start all over with self-feeding. Oh well- we move forward.

Ethan is continuing to lose weight. It has been concerning me for a while, but for the first time, it is concerning to a doctor too! Over a year and half ago, Ethan weighed 42 pounds. His BMI was even a tad high for his age and height, so we cut back on extra calories like the Carnation Instant Breakfast (CIB) that we put in his milk for that little extra. Six months ago, he was 35 pounds. He was holding steady at 36 pounds the past few months until recently. Yesterday, he was 33 pounds! When people see him after not seeing him for a while, the first comment is "Oh my, look how much he's grown!!!". Well, we thought that he was just growing taller without gaining the weight because until a few weeks ago, he was walking a significant amount in his walker. Well, he has grown a centimeter in six months- ONE CENTIMETER! There is something not right about that. So, we are going to recheck his thyroid. His labs have also been ordered to check everything- kidneys, liver, sodium, proteins...The blood test should be able to determine how he is absorbing his nutrients. I mean, Ethan eats. It may be a struggle and I may have a handful of my own hair pulled out afterwards, but he does eat. Keep you posted on that...

So now, we get to give a serving of "Yummy Pudding" and "Yummy Oatmeal" to Ethan everyday. The pudding basically consists of a pudding packet with whole milk, CIB, oil, and something else. The oatmeal is just an instant oatmeal packet made with half and half instead of water. Ok, that's like an extra 400 calories per day!

Now, the good news! Ethan has been on a waiting list for Vital Stim Therapy. A very long waiting list. Well, he's in! We begin therapy on June 2nd. Ethan will HATE it. It will be TOUGH. It is not guaranteed to work. But, it COULD work. We HAVE to try. It is very intense- hour and a half sessions, three times per week for about 5 weeks. Fun times- wish us luck!

That's how those 2 hours+ went down. Ethan hated me afterwards. Isn't it great being Mommy?!?!?! :-)

Ethan's IEP today

I think that Ethan has a great team on his side! We are not inundating him with goals that he cannot achieve, we are going to concentrate on specific tasks in order to get to the next level. Not to say we weren't doing this before- we were just trying to do it all too soon. Ethan needs concentration on a certain task in order to grasp it.

His latest behavior problems also come into play with how we will approach therapy over the next few weeks. We will be concentrating on oral motor skills and putting his walking on the back burner. We know that he can walk, so it's not like he will be losing too much skill there. We do, however, need for him to keep his hands out of his mouth in order to achieve any goals in ANY other area.

Ethan is incredibly stubborn, so this is not an easy job for any of us on the "team". Wish us luck!

Happy Mother's Day!

I would like to say HAPPY MOTHER'S DAY to all the Mommies out there! I would also like to take a moment to reflect on those who have lost their mother's or even their children. My best friend, Karen, lost her mother a couple of years ago and her precious Olivia in February. Today, is especially difficult for her, so if you could say a prayer for her and any other who is mourning today, I would appreciate it- thank you.

Happy Birthday MOMMY!

I couldn't do the formal shout out to my Momma for her birthday yesterday! So, a day late- here it is!!!

Happy Birthday Mommy! We love you! We hope your day was great!

Ethan...grrr.

Ethan has been an absolute pill for the past couple of weeks. He has gone backwards developmentally- it is quite frustrating. Even school is on the one-way ticket to Wits End with me. I have been given some ideas as to what could be going on with him. Lots of things lead to his ear tubes. One idea is that he has had fluid in his ears for so long that now that they are draining out, the overload of hearing sense has thrown him back into "comfort zone" which equals not walking and hands in the mouth. We are having such a time with him and it very well could be a toddler-like behavior, but the timing is quite coincidental. I have calls into doctors and he sees the behavioral pediatrician on the 19th for feeding clinic. We'll see...pray for us.

My First Open House

Last night, I held my first Open House for Uppercase Living. Five of my friends came and we enjoyed each other's company while looking over the beautiful expressions that UL offers. I am especially excited to see the custom expression that we made for Olivia. Thanks ladies for coming and supporting me!!! *muah*

A couple of friends were with me until almost midnight because of a horrible storm that was ripping through our area and then camped out around their homes. This was tornado-type weather and there was even one spotted not that far away from here. So, we just chatted away with lightning as our background.

CONGRATULATIONS RENEE!!!

I would like to congratulate our friend, Renee Garcia over at Life With My Special K's for winning the Military Mother of the Year Award!!! Renee is a mother of four children, wife to Frank, advocate for Down syndrome...just to name a few. Frank is currently in Afghanistan serving our country in the Army. This is Frank's second tour over to the Middle East. Renee and Frank's third child, Kennedy, has Down syndrome and also went through the nasty "L" word.

You can read about Renee's win here. CONGRATULATIONS RENEE!!! YOU DESERVE IT!!!

Reece's Rainbow

My friend Meredith over at Cornish Adoption Journey adopted two beauties from Ukraine over 8 weeks ago. The adoptions were made possible because of Reece's Rainbow- a Down syndrome adoption ministry.

(copied from Meredith)
"There are children all over the world in need of a family, love, and basic care. Many of these children have disabilities and are placed in mental institutions at the age of 4 or 5. In these places the children rarely live past the age of 10 and most die within the first year. Will you help to spread the word to raise funds and families for orphans with disabilities? Please visit Reece's Rainbow and see how your donation- however large or small- can help a child find a family. Look a little harder and you just might find the calling for one of them to be your own.

If finances aren't a way you can help, please look across their photos and say a prayer that each one will find their forever family soon. Reece's Rainbow is an International Down Syndrome Orphan Ministry which also advocates for orphans with other disabilities across the globe. Please "grab this button" and post it with a message to your own readers as well. It starts with ONE, but then grows exponentially. You never know, your own post may be one that finds a family for one of these precious children."

Grab This Button
Yes, those two beauties are Emma & Micah. Before and After so to speak. I recommend visiting Meredith's page to see the amazing things God has done for their entire family.

Feeling Nostalgic

I don't know why, but I have dug out a few baby pics of Ethan. As I took him to the doctor yesterday for what the doctor feels confidently is "just a virus" (grrr...), I looked at Ethan and just reflected on what a big boy he has become! Now, he has lost more weight- down to 34 pounds now. Part of that is because his appetite was junk the past few days, but as of breakfast this morning, it's picking back up thanks to strawberries & cream oatmeal and blueberry milk - yes, blueberry milk. I found it at the grocery store yesterday and just thought that it would be something that Boog's would enjoy. Momma was right ;-).

Anywho, I thought that I would share a couple pics of when Ethan was little. This was, of course, before digital cameras so the quality is not that great.



My favorite is the one of him laying down in his crib looking up at his mobile. I thought it looked like he was praying. So sweet...

A couple of reviews

This is a totally random post that has nothing to do with my family. Due to my manfeet always being barefoot or wearing flip-flops, I have cracks that even make me cringe to see. So, as I was in Walgreens last night, I see the Ped Egg at the checkout. I asked the clerk if she knew of anyone that used it and she said that she had it and LOVES it. Ok, so if you have seen the commercial, you know that you basically grate your feet and the "shavings" (bleck) go into the egg compartment. That thought alone made me want to vomit, but since it is only April and I have the next 6 months (at least) of barefootedness, I figured that I should at least give it a try. Ok- it's awesome. Yes, the shavings are nasty to think about, but really just look like powder (ew, ew, ew, ew, ew...). I recommend it.



My second review is of the movie, "Forgetting Sarah Marshall". Scott came home from work early today and we decided to take advantage of the chance to go to the movies. We were originally going to go see "Baby Mama" because Scott has a serious crush on Tina Fey- seriously, she's on his list. LOL! Turns out that movie started too late for us to see and return to get Ethan in time, so we got in just in time for FSM.

I was prepared for some completely inappropriate humor. I knew that main character goes full monty in the beginning of the movie. I saw 40 year old virgin and didn't think it was incredibly funny, so I just looked forward to the time Scott and I were spending together. Turns out, the movie was really funny! The English actor in the movie was hilarious, Mila Kunis is stunningly beautiful, the scenery is awesome, Paul Rudd- well, I love him. It was not money wasted for us- we had a fun time. The only uncomfortable part would be sharing the theatre with a much older couple...seriously 30+ years older.

Now, it will likely be another 6+ months before Scott and I can go to the movies again unless he figures out a way to go so he can see his Baby Mama crush, Tina Fey.

Special Olympics

Yesterday, Ethan participated in his first Special Olympics. It was nothing like I expected- more like a field day really. It was all fun and good times, except I had Ethan stand/walk the entire time. The grounds were wet and he didn't really want to be held, so he had to stand. He loved the track, so next year we may sign him up for relay! The montage is of the day, so it includes his classmates.


2008 Spring Special Olympics

Uppercase Living

First of all, thank you to those that cheered me up from my funk yesterday. I felt much better today. THANK YOU!!!

Now, my big announcement: I am now a demonstrator for Uppercase Living!

Never heard of it? I hadn't either. When I was back home in California, my sister, Kim had these beautiful expressions on her walls. They added so much character to her home! She showed me the catalog and I was in love! When I returned back to North Carolina, I contacted another demonstrator. I found out that there are hardly any representatives in my area, so I would essentially be coming into the company when it is new and fresh. Sounds good to me!

Yes, this is a direct sales company. But, the difference about Uppercase Living for me is that I think that it is a fabulous company that can bring happiness to many homes! Anything that you order is by your own preference, so I don't need to have stock on hand or try to pressure people into buying things. What you buy is truly what will bring more to your home! My out of pocket expense is minimal and I am hoping to make that back within a month.

I really needed something that I could do from home and still have the flexibility for Ethan. That was my challenge. Nobody would watch him afterschool and nobody would hire me now with my limitations for him. Financially, it really put us in a bind. So, I am beyond happy that I will be able to contribute back to my family! Another great thing is that Scott and I can work together on different projects.

I truly believe that God put this opportunity in my lap. I have not worked since January and we continue to be provided for. It is truly amazing!

If you would like to see Uppercase Living a little closer up, log on to Uppercase Living, go to the Customer Corner. You will need to register, but it's free and super easy!

Demonstrator ID: 436564
Token: Faulkner

I look forward to hearing from everyone! Tell me what you think and better yet- let me know if you would like to host your own Open House! ;-)

Bad days

I don't feel myself. I am trying. I'm tired. My hands are acting up. I am going to a at-home party in a bit. Maybe putting on some makeup will actually help me feel better.

Welcome to the tube club!

I had to have Ethan at the hospital this morning for a scheduled sedated ABR (Auditory Brainstem Response) to check his hearing and a possible adenoidectomy. We did not anticipate a tonsillectomy since his tonsils are really small. The test was being done because we are trying to find an underlying problem for Ethan's lack of speech and language development.

Well, once the doctor was in there, he did not feel that the adenoids needed to be removed- so no A. Tonsils were fine too, so no T. No T & A for Ethan. What he did find was a LOT of fluid in his ears. So, we have now joined the ear tube club! His ENT nor I expected to be getting tubes today! He said that Ethan does not fall into the classic case of what is seen before putting tubes in- he rarely has ear infections. So, tubes it is.

The ABR shows that Ethan's hearing in his left ear is fine, but the test shows that he could have minor hearing loss in the right ear. The ENT feels that the test could have been affected by the fluid buildup and that we should retest the right side in the office on a regular basis. Even if he does have loss in the right ear, since his left ear is perfect, it would compensate the right and should not affect his S & L.

Now that Ethan doesn't have his port, they had to do an IV (thankfully after he was asleep), but removing it was awful. Poor baby screamed so loud! The tape they used was awful and it ripped every little hair off of his arm...my poor lil' monkey.

We're back home now and looking for a nap!

Support Ms. Mary!

Ethan's teacher, Mary Heaton, is on the Team in Training team to raise money for the Leukemia & Lymphoma Society. She joined the team in honor of Ethan and his fight against blood cancer!

Mary has been instrumental in Ethan achieving his academic goals this year and we are so proud of her for taking the initiative to train to run over 13 miles for Ethan.

In the process of Mary's training for the half marathon in Nashville on April 26th, she also decided to train for the full 26 mile marathon in Alaska! Unfortunately, Mary has injured her hamstring and she is unable to even walk either marathon, but that doesn't mean that her heart is not with her team and with ETHAN! She will continue to join her team in Nashville to cheer them on.

Can you please help her cause? Any donation is greatly appreciated!!! Support Ms. Mary HERE

Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

The Clock is ticking...

Yep, the biological one. Bad timing. Well, it's been ticking for a while but it's really been bad the past few weeks. I want Ethan to have a sibling so bad. I want it for him. I feel that he deserves it. I can't imagine my life without my sisters and brother and I think that Ethan having a sibling would do wonders for him. Have you noticed the I and not we? Of course, me being unemployed now doesn't help things!

I never thought that my children would be so far apart in age. I mean, only having Ethan during the time of our move and his leukemia treatment was a huge blessing. We were able to concentrate solely on him. Scott feels that if we have another baby, we are taking away from Ethan. He deserves all of our love and attention. So, I am torn because that then makes me feel like I want to take away from Ethan. That is not the case!

I watched some friends in church yesterday with their new baby girl. I watched them cuddle and smile at her. I almost cried. I want it again.

Part of this is selfish for me. I miss being pregnant. I want to experience it again. The other part is definitely for Ethan.

The Memory Keeper's Daughter

The Memory Keeper's Daughter aired on Lifetime last night. It is based on the novel by Kim Edwards about a doctor whose wife gives birth to twins, one of them having Down syndrome. Based in 1964, the doctor told the nurse to take the baby to an institution and then proceeded to tell his wife that the baby died. The nurse does as asked, but once she sees the horrific practices towards the children/adults at the institution, she leaves and takes baby Phoebe with her.

I have not finished the book yet and I now look forward to comparing the TV version against the novel. I feel that the movie captured many points that we even continue to battle today. Our children with Down syndrome ARE capable, they ARE beautiful, they ARE smart, they ARE aware! Our children with Down syndrome are not sentenced to a death sentence- they LIVE! Our children with Down syndrome are not mongoloids- they are OUR children.

Overall, I was very pleased with the movie (minus the awful hair style/wig that they had on Phoebe!). I recommend that everyone watch it/read the book.

*Important*

My friend in Tennessee posted a very well-written blog that I think is important for all to read. She has a wonderful way with words and maybe she can help you understand why language is so important to us. Renee's Blog- Life With My Special K's 03/29/2008 "Why It Hurts"

Slideshow from Trip

So, I tried to post a few pictures directly and it was trying my patience, so here is a slideshow. Enjoy.

WE ARE HOME!

Ethan and I returned back to North Carolina after an almost two-week stay in California with my parents. We were greeted at the airport by Karen, one of my best friends and Olivia's Mother for anyone who has been reading earlier posts. I have never been greeted with such enthusiasm and excitement before! She ran to me and Ethan like there was no tomorrow and then we just held each other and cried. We both really missed each other!!!

Amazingly, our luggage made the flight with us. Our red-eye flight out of Oakland left over an hour late which left me about 20 minutes to get from Terminal C in Houston to Terminal B. You guys didn't know that I could run that fast, did ya?!?! LOL! I literally arrived at the gate as the airline attendant was saying "If you have a ticket for Raleigh/Durham, you should be ON THE PLANE NOW". So, for our luggage to make it too was miraculous.

Neither Ethan nor I slept hardly at all for over 24 hours. Ethan cried and fussed a bit, but because he wanted me to hold him before take-off and we couldn't do that until we were mid-air. Overall, he was a good traveler on the way home.

After we left the airport, we met up with Karen's cousin, Shannon, at the Cheesecake Factory (yum, yum, and more yum, yum's). It was a great tour of the mall parking lot until we found it. Fun times...

Scott was home when we arrived home. Ethan was SO excited to see our house. It was the funniest thing! He saw the house and just got the biggest smile on his face! I wish that I had the camera out for that one. We basically got our stuff inside and collapsed. Well, I did anyway. Scott and Ethan had playing to do. I will post those pics a little later after they are uploaded to the computer.

The trip was good. I didn't feel good a good majority of the time due to my allergies and some things happened that totally crushed me emotionally, but I was home, got to see my family, party with my sister, Kamrin, for her birthday and go back to Yosemite with Ethan. The weather was beautiful, never even needed to bust out my jacket or big sweaters.

We were able to see some friends along with some of Scott's family. We missed lots of people which is sad, but also got to see people that we didn't think we would or could, so that was an added bonus.

I am so happy to be home. I LOVE MY BED. I was able to sleep in today, which was beyond lovely. Of course, Ethan was in his room, taking his toys and chucking them over his gate onto the hardwood floors. Thanks Son.

Pictures to follow soon...I hope. :-)

8 more days

And Ethan and I will be on our way to California. We have a stop in Houston, so we will also get to see Kimberly, Steve, and Joel. I have never looked forward to a layover so much in my life! :-) We will get to spend almost 3 hours with them- YAY!

We will then be in California for about two weeks. We haven't been back in close to two years, so it will be interesting to see how things have changed. I plan on going to Yosemite so Ethan can be there. My mom says that there is plenty of snow, so Ethan will get to play in the fun white stuff. I hate packing for cold weather though- we usually travel during the summer so we don't have to deal with bulky stuff.

Scott doesn't get to come and we are really bummed about that. But, maybe it will be a good respite for him too.

Ethan and I will get to meet Christopher, my brother Kolt's baby, for the first time. Ethan will have a playmate for the weekend! I am hoping to be able to spend some quality time with my nephews and niece too. Two weeks is going to go by way too fast.

Olivia has been gone for two weeks and two days now. I definitely have my bad days. This will never be ok.

We went to Atlanta over the weekend for a Downsyn meetup. It was much smaller than last year's, but we had a good time. Some friends let us stay with them which was much more relaxed and good for Ethan. He was able to play with Natalie who is almost two.

I have been going crazy getting Ethan consults with different doctors. I am going to have him see a neurologist about tethered cord/spina bifida occulta. Let's just say, a hairy back on a 6 year old is not common...

The next doctor would be the cardiologist. I would feel a LOT better if I know that the holes in his heart are CLOSED. He has not had an echo since he was around 2 weeks old. All the doctors are confident that his heart is fine, but for my peace of mind (since our luck is not so great lately), I would just like to get it cleared up for sure.

Scott's sister, Cindy, may be coming to visit us next month! We are so excited about that too! Lots of stuff going on. Trying to keep my head on straight...

The Princess Party That Never Should Have Been

Yesterday, we laid our dear Princess Olivia to rest. So many people came yesterday and the night before to be with Olivia one last time. People came from other states to see her. She was such an amazing spirit that touched so many people all around the globe. The flowers that were sent were amazing.

After Olivia's beautiful service, we released pink Princess balloons in her honor.

Photo and video editing at www.OneTrueMedia.com

I miss her terribly. My heart is aching. As I try to encourage Karen to rest, I find myself not being able to do it either. After laying down last night around 2am, I found myself awake at 2:30 from a nightmare. I was hoping to dream of Olivia dancing and singing along the streets of gold. Maybe today's nap will bring that dream to me.

One of our darkest days...

February 13, 2004. Ethan is diagnosed with leukemia. It is a date forever etched in my brain. Today, he is a growing, healthy little boy. He amazes us everyday- even with the newly emerging terrible two behavior!

I am still numb about the loss of our sweet Olivia. As I make a couple of phone calls for Karen to inform of Olivia's passing, it still seems so unreal. The last dr. I spoke to said, "OH, I hate to hear that"...I said, "I hate to say it". Karen and I have gone to the funeral home the past couple of days to see Olivia. This may seem creepy to some, but it is done out of pure love. Last night, we even dressed her in her beautiful gown. Her hair is curled and she has her special bow in. She is wearing her new ring and bracelet. We still have to take her necklace and a couple of her belongings that will stay with her forever. Karen and I must seem so odd to the funeral home director...we were fixing makeup (originally, she was a little too orange), putting on lip gloss, and picking fuzzies out of her hair. These are things that we did when she was alive and it just seems right to be the ones to do it until the end.

Karen was able to pick Olivia up and hold her before laying her into her casket. It was a beautiful moment and I am so honored that I could be there with them during that time. I am so thankful to Karen for allowing me to be such a big part of Olivia's life. I just cannot even begin to put into words how much I love that precious little princess. Not loved, love. Love does not die with the person, nor does it fade.

Thank you to everyone who has sent condolences for Karen and Olivia's family. It is so appreciated.

Our loss, Heaven's gain

Today at 4:58 pm, Olivia earned her wings. Thank you God for answering our prayer for a peaceful passing. Our hearts break for our loss. Olivia was a true Princess. She passed in her favorite place- her Mother's arms. I am reminded of Steel Magnolias when Shelby passes and M'Lynn says how it was truly a beautiful thing, being able to be there when that precious child was brought into the world and also when she left this world. There is no bond as that of a mother and child.

I loved Olivia from the first time I met her. There has always been something about her. She was what love is. SO many people love her- people who have never met her or Karen. It is just a testament to how someone can speak volumes without ever saying a word. Her smile lit a room. Her love was unconditional.

I knew that God brought me to North Carolina for a reason(s) and I truly believe that one of those reasons was so I could know Olivia and Karen. I have been so incredibly blessed to have been a part of their lives. I always made it a point to come over to the house to visit at least once a week so I could see the Princess. We read stories, sang, and had great talks. Olivia gave the most wonderful kisses- kisses I will forever treasure. I will never forget the time that Olivia raised her arms out to me for a hug or when she would shake her head NO when it came time for me to leave. Of course, she usually didn't mind if I took Ethan home because, bless him, he never did have a good sense of where his feet were flying and would step on her *sorry Livvie*.

When I lost my job last month, I told Karen that she had full coverage (Posse members made a pact for Karen to never be left alone during this time) and she made a comment about how maybe that's how God intended it. As the weeks unfolded, I really began to believe this. I was used in a certain way to be able to help care for Olivia and Karen. I am so grateful for all of the extra time that I had with Olivia and I thank Scott and Ethan for being so wonderful during this time too.

There were times over the past few weeks that I had hoped that we were all in a bad dream and this really wasn't becoming a reality...if only. Olivia defied all odds and definitely did things on HER time. She was surrounded by loved ones until the very end and she will FOREVER BE A PRINCESS!

*Livvie...sweet baby girl. I miss you terribly already. While my heart aches here on earth, I also smile with joy because I know that you are dancing and singing through the streets of gold. You are whole and perfect. No more seizures, no more tubes, no more pain. I will continue to take care of Mommy, just like I promised you. I love you sweet Olivia, forever and always!*

Please continue to pray for Karen and Weldon as life as they know it has just been turned upside-down. Thank you.

No AVM

Yesterday, I had the cranial arteriogram done. It wasn't that bad. They said that I would be consciously sedated and not remember anything...yeah, I remember EVERYTHING. Go me. The whole catheter in the groin was a ton of fun. The contrast (dye)was even better- it made my brain hot and crampy. Then, when it was all done, the doctor had to keep pressure on the incision site for over 10 minutes. I was sore last night from all the mashing with pressure. When I got back up to my room, I developed a migraine. I was given some tylenol (not sure if it had codeine or not, but I was asleep the rest of the day). Sleeping everything off helped ease the nuisance of having to lay completely flat for 8 hours.

So, the good news is that they did not find an AVM. AVM's can be very serious and dangerous. They did find that I have narrow vessels transporting blood and I hear the "turbulence" of the blood flow. Well, I have known that it is blood flow that I am hearing, so that was nothing new. What we do about it now is up to the ENT again. I have no clue as to what he will recommend. It will likely be a "live with it" situation. So, while it is good that there isn't an AVM- if it was, at least there would have been treatment options.

Thank you for the prayers about the procedure, for my job, and for Olivia & Karen. It means so much to me. Olivia's seizure medicine was increased yesterday, but before anyone gets too excited...seizure meds have some nasty side effects that include respiratory distress among other things. It's like fixing a problem to create another, but everything is done day by day. Please continue to pray for sweet Olivia.

Photo courtesy of Anne Grant Photography

Getting a little nervous

I shouldn't. Tests like this are done all the time. Just the idea of something being threaded all the way up my body is a little creepy. I have Kim's book to take with me and read. God bless my sister who can write me a book for day's like tomorrow.

Finally- someone else heard it!!!

Ok, so for those of you that don't know...I lost my job a couple of weeks ago. Long story short- my friends who I worked for stabbed me in the back. This is supposed to make me happier. Sure it does. I LOVE worrying about how my mortgage will be paid or how I will keep medical coverage for my family. Yep- I am SO much happier now. Enough of that. They don't deserve my energy anymore.

The good news. I went to the radiologist/neuro doctor yesterday for my pulsatile tinnitus in my left ear. I have had this awful swooshing sound in my ear since I was around 8 weeks pregnant with Ethan. At the time, it was just supposed to be excess blood flow that would go away after the baby was born. Nope. Didn't happen. I was then referred to doctors at UCSF. They did lots of tests to rule out a tumor (obviously, I did not have a tumor). But, when they could not duplicate the sound by stethescope, I was blown off and basically told that I would just have to live with it.

I was referred to this neuro dr. from the ENT here in NC. He listened. He could not duplicate the sound either. He recommended a cranial arteriogram to rule out an arterio-venous malformation (AVM). He didn't think that the test would show anything, but we should try. I felt like I was going in circles again. More tests just to be told in the end that I would just have to live with it. I was disappointed and started to cry. (Imagine listening to a baby's heartbeat during a sonogram, close to 24/7 in your ear. Not cool. I love to hear it on a monitor, not in my ear!!!)

Another doctor on the team also took a listen. She stands up and says, "I think I hear it". She then described the sound and sure enough, SHE HEARS IT!!! She listens again, and again. Yep. No mistaking- she hears it! I, then, REALLY begin to cry. Finally- someone else heard it! I am NOT crazy.

Now, the arteriogram is set for Wednesday morning. They now think that the probability of finding an AVM are much higher. I am not looking forward to this test at all. Apparently, they sedate me, put a catheter-type thing in my groin all the way up to my neck and then inject dye so they can see all the arteries in my head. The fun part is after it's all done, I have to lay flat for 8 hours so to make sure the groin incision does not bleed out. All I keep thinking is that I am too young for all this crap!!! (Rheumatoid Arthritis at 25 and this...I wonder if they are linked at all)

Ethan is doing well. It snowed on Thursday and then today, but today didn't stick. Boo. Olivia has good days and bad days. We are just all loving on her while we can and take nothing for granted. I actually need to get ready to head over there.

Christmas 2007

Christmas was so incredibly quiet this year. No, I never put a tree up. Shame on me, I guess. Ethan could really care less right now and Shep always likes the hug the tree and make me think that he is going to knock it over. Ok, ok...next year I will put it up. Can you try to convince Scott to put up the Christmas lights outside? (Yes, he has refused for 5 years now...grrrrrr).

Ethan got the gift of his dreams. Not a red rider bb gun, but a red dirt devil housekeeping set! How exciting!!! I don't have to clean anymore!!! Ethan will take care of it! LOL!!! Check him out- he has been carrying this stuff around the house since he got it!

Photo and video editing at www.OneTrueMedia.com

We hope that everyone had a wonderful holiday. I am still so homesick. May will not get here quick enough...

Today is my grandmother's birthday!!! HAPPY BIRTHDAY MOM!!! WE LOVE YOU!!!

Just cuz...

Christmas has come and gone. Nothing exciting to report except that Ethan LOVES his new Dirt Devil kit, complete with mini-mop, scrubber, duster, and broom. He has been carrying those things around since he got them. I think that I may have a clean freak on my hands! I guess that's kind of a good thing for me! LOL!

Ethan's big boy tooth is already coming down. He's not wasting any time with this snaggletooth business!!! He does have a little bit of a tummy bug, but overall is acting great.

We hope that everyone had a wonderful holiday. Lots of love always...

It's Christmas Eve!

And, I have close to zero Christmas spirit. No tree. Only a present or two for Ethan. I just refused to go into further debt for something that Ethan has no interest in yet. Sad? Yes. But, it is what it is. Our Christmas present to our family was to take the money and pay bills. Yeah us. Then, maybe we can visit home sometime in the Spring. We miss everyone back home so much.

We hope that all of our family and friends have a fabulous Christmas filled with love. (For anyone wondering- I will mail out the Christmas cards when I can- hopefully this week.)

Here's a picture of Ethan's missing tooth.


And, I just added these to the computer. Ethan was all smiles after school one day a couple of weeks ago...