Pray for Evan

One of Ethan's classmates needs prayer tonight. Evan was taken to the hospital and possibly suffered from a stroke and currently has a rising 102 fever. Evan is a sweet little boy who has brought so much to the classroom since he came. Please join us in praying for his speedy recovery! We love you, Evan!

Ethan continues to do well post-op. He didn't even take any pain meds today. He is eating and drinking like normal, too. We are prepared for this to change in a few days. We have yogurt, sherbert, applesauce, and pudding ready to go. Thanks to everyone who continue to check in on him.

Surgery in more detail

First of all, thank you to everyone who was and is continuing to pray for Ethan's recovery! He is doing really well as of today- eating, drinking, and laughing like normal. We are told that by Day 5, we might be singing a different tune, though. :(

So, even though Ethan's tonsils were not terribly enlarged pre-surgery, our ENT did tell us that as soon as Ethan was sedated and sleeping, the tonsils did drop down to obstruct his airway. This should definitely help his obstructive sleep apnea, then. YAY.

We opted to stay overnight in the hospital to make sure that he would drink. Ethan has a history of not taking anything by mouth if it hurts, so we needed to be available to IV fluids. As, my play-by-play mentioned- sherbert was our friend, for sure. We gave him juice by a syringe, a couple of mL's at a time. The coldness of the sherbert was perfect. It was soothing enough to his throat for him to continue eating it.

We could definitely tell when the pain kicked in.

The big advantage of staying in the hospital was having IV morphine!

There was a slight bleeding problem the night of surgery. The doctor thinks that it came from the tongue, but it was still hard to see Ethan coughing up chunks of blood!

Ethan slept ok. He was up and down all night, but he was so groggy and never cried. I think he was just disoriented.

The next morning, I made up some juice, but he started swatting it away after only a few mL's. That scared me a little. But, then breakfast came and he ate all of his grits and then a whole sherbert cup. It was just the initial swallow that was the most difficult.

After eating, we started to see a little bit of our Bubs coming back to normal.


Ethan was especially all smiles when Daddy showed up. Then, they goofed around and I get to take silly pics like this:

A silly pic I absolutely love. ♥

We went home 24 hours after surgery and so far, so good. Keep praying! Spanx!

RAP

RAP is an acronym: Retards Attempting Poetry

Haha funny. No. Not so much.

This was the Facebook status of a teenage boy we know. I didn't really have time to write him a detailed explanation about why his seemingly harmless status was not cool, so I simply wrote "NOT COOL, NOT COOL AT ALL". Another person responded that it was funny to which I said, "NO, this is NOT funny at all". Then, the response that followed is what I wasn't expecting. Teenage boy's Aunt- a friend of ours (actually a friend of Scott's since childhood), defends the acronym and says that they find it pretty funny themselves.

How is it that such small statements can be so profound to knowing a person's true personality? I was in shock by the defense and support of the statement. I simply sent her a message with a link to www.r-word.org and that we expected a little more respect from someone who has claimed to care for Ethan.

From this point, I didn't expect to hear anything, but I did this morning. The reponse was more defense. I am so sick and tired of people getting defensive when it is brought to their attention that something is offensive/hurtful/insulting. Why can't people just sit back, reflect, and think for a moment about what we are trying to educate on? Hey, here's an idea...how about a little respect? Geez.

...Going home!

...ok night, attempting to drink now. Only got 2mL in before he started swatting it away.

...pain returned, difficulty swallowing, more morphine given along with tylenol. Sleeping again, praying for an uneventful evening.

...bleeding has stopped. He is now snuggled up to me resting.

Lime sherbert is our friend

...he is out, did well, will be on his way to recovery soon.

...In OR now

...He's drunk on versed, LOL.

Surgery Today

Ethan will be having a tonsilectomy and tongue reduction today. His palate will also be opened up a tad by pulling a stitch back by the pillars. The palate expansion was what I was most nervous about because I didn't exactly know what was going to be happening, but Ethan's ENT explained it to us on Wednesday. It is minor and will maybe give an extra millimeter or two of space. Seems like such a small amount, but it may be enough along with the other two procedures to keep him from having obstructive sleep apnea.

So, now that Ethan is a big nine year old, his surgery is not until this afternoon. Good news on that is that we didn't have to be at the hospital before God was awake. Bad news is that this child is now starving. Normally, we can distract him from really focusing on the fact that it is past breakfast, but not today. He is crying and so upset. :(

At least the surgical center just called and asked us to come in a half hour earlier...still, poor Bubs.

The Birthday.

Ethan had a wonderful birthday.  He went to school and got to have a little party with some other classes.  For his birthday dinner, we went to IHOP because Ethan's favorite food of all time is the pancake.  We had many friends join us to celebrate!  Overall, Ethan had two cupcakes, three pieces of cake, five silver dollar pancakes, and a quarter of my stacked pancake.  Do you sense a love of cake theme here?  LOL


The cake, a half sheet surrounded by cupcakes.  It is supposed to serve around 70  Yeah, there's none left...


You think he likes his cupcake?

Madison gave a very special birthday toast to the birthday boy...

Photo and video editing at www.OneTrueMedia.com

{video}

Taking a very important birthday call from California


WIPED OUT!

Since Ethan was too wiped out on his birthday to open presents, he opened them the next morning.  He got some great clothes, money for his Disney Fund,  and a Buzz Lightyear! 


Having fun with my present


LOL.  I think he looks so big here, though.

Scott and I took Ethan to Toys R Us after his pre-op appointment yesterday for his birthday balloon and present.  While there, we went back to the bikes and stuff.  Ethan has a new wish list...


(He is actually signing "want" in both of those pics)

Four Wheeler?

And...his new little pool.  We have had the big blow-up pools in the past, but they are just too hard to keep clean!  This is perfect just for him, and he LOVES it! 


Great birthday for Ethan!

NINE!

...then, 45 minutes later, you were here- forever holding our hearts. 

Happy Birthday to our little man, Boog's, Booger Butt, Bubs, Bubba, Bubby, Sneaker, Buster...Ethan. 

First picture.

The one and only picture Momma has with her little boy after he was born.

Daddy looks like he doesn't quite know what to do with you there in the nursery.  I think that he was just in shock that you were actually real!  :)

The polaroids that the EMS team gave me before they took you on your first road trip.  Unfortunately, it was to the children's hospital an hour away from home. 

My sweet boy, you have been through an incredible journey of life so far!  You are such a fighter and have so much determination (on your terms).  Anyone who meets you loves you.  You have lost 7 of your baby teeth, with an 8th very loose.  Maybe today is your day to lose it.  Tonight, we will celebrate with you at IHOP for dinner so that you can eat as many pancakes as you want. 

I am having a hard time with you turning 9.  It is hard to explain, but I think it has a lot to do with the fact that it is your last year before you turn 10 and enter the double-digits of life.  It's all good, Bub's.  You're going to rock out Year Nine just like you did Year One, Two, Three, Four, Five, Six, Seven, and Eight.  Your Daddy and I thank God for blessing our lives with the honor of having you as our son. 

Happy Birthday my lovey boy. 

♫Happy Birthday to YOU!♫
♫Happy Birthday to YOU!♫

♫Happy Birthday Dear Ethan!♫

♫Happy Birthday to YOU!!!♫

Nine years ago today...

I was on maternity leave, anxiously awaiting Mr. Ethan's arrival.  I was relaxed and ready.  I got to talk to my sister, Kim, on the phone and go over all of the "has this/that happened yet?" questions.  I went to get my nails done by the fabulous Robin (miss those nails!) and my toes touched up for the occasion, cuz you know- pretty toes is the first thing the OB sees!  LOL.  I was having contractions, but nothing consistent or worrisome.  I remembered that I didn't have a nursing bra yet, so off to the mall it was.  Afraid to eat since I just knew I was going into labor, I had a cappuccino blast from Baskin Robbins.  I had my friend, Jessie, come over to help me with some things when the contractions started getting closer and closer.  When Jess was timing them and said that they were three minutes apart, we knew that we would be going to the hospital that night!  But, it was a Thursday, which meant FRIENDS and Whose Line Is It Anyway.  I was determined to not be one of those women who show up at the hospital 2 cm dilated when they feel like they are farther along!  So, we waited, watched, and laughed...

About 10pm, we went in to the hospital.  Guess what?  I was only 2 cm dilated!!!  I feared that I was in for a rough ride.  Luckily, there were not any other mothers laboring that night or else I would have been sent home.  The nurses had me walk around for an hour.  So, I walked and rocked, walked and rocked, walked and rocked...an hour later I was 4 cm!!!  We were not going home without a baby!!!  :)

Over the next hour, I did the same thing:  walk/rock/walk/rock/walk/rock...midnight check = 6cm!!!

And, then my water broke....

Faulkner Woodworks on Facebook!

Faulkner Woodworks



Become a Fan!  Scott has been working SO hard on his projects for many years.  He loves what he does and is very passionate about what he does.  He has such a talent and heart for building pieces out of recycled/reclaimed wood. 

His Etsy store and link on this blog are still under construction, but will be up {hopefully} soon. 

~THANK YOU FOR YOUR SUPPORT~

Inspiration *tissue warning*

Thanks Marlene for reminding me of this amazing duo!

Have you ever heard of Team Hoyt?  If so, then you already know what an inspiration they are!  If not, then prepare to be inspired...and, maybe shed a few tears.



And, another...


I could watch those videos over and over again in amazement and awe. 

What Would YOU Do?

Last night, ABC aired their program "What Would You Do?".  They play out scenarios with actors while being filmed by hidden cameras.  Some segments have included:  An abusive man with his bruised girlfriend in a restaurant- do you say anything?; Airline pilots getting drunk at a bar before flight- do you say anything?;  Man lures drunk girl- do you step in?  Last night, one of the segments was titled "Woman Berates Grocery Clerk with Down Syndrome".  Please watch:



Now, ask yourself, WHAT WOULD YOU DO? 

This is why we fight so hard against the "R" word.  It is used to berate people, and IT IS NOT OK!  So, do all of us a favor who have a loved one who is the easy target, please please please STOP using the "R" word, and please do not be silent if someone is being abused such as in this scenario. 

I wish that I could go to Brooklyn and personally give the women that stood up for Josh a big hug of thanks! 

PBG Update

Got the "thanks, but no thanks" e-mail this morning.  Guess it wasn't meant to be. :*(

The hardest part was telling Scott, who after being told let out a big sigh and hung his head with a bit of discouragement/disappointment.  I would be lying if I don't feel like I have totally let the family down.  I know that I could have done the job applied for and I know that I could have done it well. 

Onward...

(thank you to everyone who prayed, kept me in your thoughts, and asked for updates- I appreciate it so much!)

Giving Life

I have been donating platelets on a regular basis for about two months now.  Every other Friday (typically), I go down to the American Red Cross, sign in, go into a little room, answer some questions, get my iron checked, pick out a movie, sit back, relax, get hooked up to the apheresis machine, and enjoy my chosen movie.  I am doted on with warm blankets and can even get my face scratched, if needed.  I look around and see about 3-4 other people doing the same thing that I am....giving LIFE. 

I know that the platelets that I give can save up to three people.  If all of those 3-4 people can also save up to three people, that is 12-15 lives being saved over the course of two hours!  How amazing is that!?!?!?

Knowing that you are saving up to three lives is amazing.  You want to know what is even MORE amazing????  KNOWING that there is someone out there WAITING for YOUR donation because of a specific antigen that YOUR platelets match with theirs. 

Today, after my donation, I was informed that a man named David was waiting for my donation.  Today's donation didn't just go to the blood bank for the next available need, it went specifically to save David's life because of the antigen match.  I have to say that is pretty freakin' amazing!

Seriously, I have said it before, I will say it again-  Ethan is alive because of blood and platelet donors.  He received countless transfusions during his leukemia treatment.  Without the transfusions, he would not be here today.  It is as plain and simple as that.  Scott and I are forever grateful for his donors for saving our son's life.  We are forever grateful for those people who took an hour (typical blood donation time) or two (platelets) of their time, faced their fears of needles and blood, and made the decision to donate LIFE. 

Please, please, please- call the American Red Cross at 800-GIVE-LIFE and make an appointment, or go to http://www.redcrossblood.org/ to locate a blood drive.  I hate needles going into my veins.  I hate the nurses touching my arm to feel for my veins even more- it makes me cringe actually, but I do it because I am healthy and able.  A fear should not keep you from giving life! 

Ethan didn't have a choice to hate needles and opt out of the countless port-a-cath accesses.  He was afraid each and every time, but it was necessary to save his life.  YOU CAN DO IT, TOO, IN ORDER TO GRANT LIFE!!!  Get past your hang-up's about donating blood/platelets!  There are people out there that NEED YOU!  DO IT!  DO IT TODAY!!!!

*If you or someone you love has been blessed by blood donation, please comment!  Let people know how important it is!!!*

IEP/Eval TIME!

Happy Happy Joy Joy!!!

Last Friday was Ethan's IEP (Individualized Education Plan) and 3-year evaluation.  Last year's IEP lasted a little more than 3 hours, so I anticipated a longer meeting considering having to go over the evaluations, but it went for close to FIVE hours!!!  OMG.OMG.OMG.

I am fortunate to have an awesome IEP team for Ethan.  Among those people is our Carolyn- yep, shout out to our favorite, most awesome-ist case manager EVER!  ;-)  She is there to have my back and support me through these wonderful meetings that sum up my son on paper with goals and labels.  I hate labels. 

Labels....ugh.  I am not, nor have I ever been the mom that doesn't care what label is slapped on Ethan just so he can get more services.  My opinion is that if the child needs a service, he should get it based on his need, period, not because of some label attached to the end of his name. 

A good portion of the meeting was spent on the evaluations and label choice.  There are a number of different labels available to the Exceptional Children (EC).  Some are:

• ID-Mild 
• ID-Moderate
• ID-Severe
• AU (Autism Spectrum)
• MU (Multiple Needs)

ID = Intellectual Disablity

Whether you fall under the ID-Mild/Mod/Severe category depends on how you test and where your IQ falls.  Ethan has been under the ID-Mod label even though he is in the Functional Primary (severe) self-contained classroom.  I did not want his label to change to ID-severe and I was pretty clear about that.  The LEA rep (http://www.specialed.us/pl-07/pl07-ieppro/07-team1d.html) was great, but she asked me why I didn't want Ethan's label changed to ID-Severe.  This opens up a bit of discussion that is somewhat hard to explain, but is pretty much this:  there is NO test out there that will ever accurately gauge Ethan's IQ.  I do not feel that Ethan's intellectual abilities are severely affected, moderately yes, but not severely.  And, the main reason is purely personal.  When you look in Ethan's classroom, you see four other little boys with different abilities, but you don't know what their disability is.  When you look at Ethan, you KNOW he has Down Syndrome.  I can only speak for myself, but I would venture to say that any parent of a child with Ds out there would not want their child to be the face of the severe side of Ds.  Do I celebrate Ethan every single day?  Ab-so-freakin'-lutely!  The fact is that if I let Ethan's label change to ID-Severe, it would be a heck of a lot harder to get it bumped back up to ID-Mod and then our options would be significantly reduced. 

The other option was AU.  Is Ethan on the Autism Spectrum?  Yup.  He was diagnosed with PDD-NOS a year and a half ago.  Do I think that he is severly affected by autism?  No.  Neither does other people in the special education profession, so I didn't really see how he could be labeled AU.  The back and forth discussion between myself and the rest of the IEP team went on and on, all about a frickin' label.  I hate labels.

After the extensive deliberation, Ethan's label was changed to AU.  I was assured that the AU label will be better for him in terms of access to different methods and classrooms.  And, as much as I hate, hate, hate labels- this will, supposedly, be best for Ethan.  And, at the end of the day, it is what is best for Ethan. 

One specific part of the papers that I had removed and changed was that the psych report came back that Ethan had "very low intelligence".  Um, no.  Anyone that knows Ethan can contradict that statement, so I refused to have that statement in his IEP.  It was changed to say he had cognitive limitations.  Now, to some of you that may not seem like a big deal, but it is to me and that's all that matters.  HA.

On a positive note, Ethan was exited from school PT.  Ethan has met his physical therapy goals!!!  It was so amazing to see GM (Goal Met) on his progress reports!  So, here is a public shout out to Diane, Denise, and Della- his school PT's throughout the years, YOU GALS ROCK!!!  Thank you for your continuous determination to help Ethan attain the goal that we have met today. 

Oh, and we documented (once again) that Ethan does not respond well to high praises, so to keep it limited.  HAHAHA.  Gotta love that boy.  And, I do!  ♥♥♥

Deep Thoughts

I have been in deep thought lately.  It is not over one thing in particular, but a mishmash of things...mostly friends and church and how they pertain to Ethan. 

This has been on my mind for a while, but it was right in my face a week ago at a small group gathering.  We were surrounded by friends and their children in a beautiful home and backyard.  Laughter and good food.  Friendships growing together.  Children playing together.  And, Ethan was alone. 

My baby was alone.  Did he care?  Not likely.  But, I cared.  And, it broke my heart.

So, I started evaluating my own "friendships".  Are they really considered friends or just acquaintances?  Do these people call just to chat?  Do they want to get together for coffee?  Do they want their kids to play with Ethan?  Is this a search for significance?  Maybe.  I don't know.

I just know that the older that Ethan gets, the harder this gets.  It gets harder to watch everyone else grow up and have friendships while Ethan is alone.  No playdates, no birthday parties, no siblings- alone.

I have reached out to people, trust me.  I'm tired of it, honestly.  Life is life and it is what it is.  That doesn't mean that it isn't hard some days.

The love I have for my son bursts from my soul.  It is also why I get so crazy emotional when it comes to him and my hopes and dreams for him.

Anywho, too much to say, too many thoughts to get it all out.  Maybe I will try again another day.

Job Interview

Tomorrow morning, I have a face-to-face job interview with Pepsi Bottling Group.  I have already had the phone interview- actually, I had the phone interview while in New York.  The interviewer asked me if it was a good time, and I told him as long as he didn't mind the occasional sirens, we were good!  ☺

I have friends that work for PBG, so I know that it is a great company to work for.  They actually have a great benefit package that, I am told, begins on Day One of employment. 

So anyway, I am just asking that you say a prayer for me.  If this is a job that God wants me to have, then I have faith that it will all fall into place.  I have to admit, though, that I am having a bit of anxiety about going back to work.  But, again- I have to have faith that it will all be ok.

Napping

I am not sure if I will ever not love watching my son sleep.  I know for a fact that I will never deny a snuggled nap!  Ethan was so sweet today- he climbed up on my lap, curled up, grabbed my face, gave me multiple kisses, and he went to sleep. 

Needless to say, my motivation to get things done while he napped went into dreamland and I am perfectly ok with it.

Special Olympics Spring 2010 Games

This past Tuesday, we arrived at Kentner Stadium at Wake Forest University for the Special Olympics Spring 2010 Games.  When we got there, Mary was asked if she had any students that could run the torch with someone from the police department.  After some quick thinking, Ethan was chosen!  Oh my gosh- just two years ago, we were at the same stadium with a walker, doing our best to get him to stay on his feet and walk, and this year he will be assisting in the opening ceremonial torch run!!!  Can we say "Proud Mommy Moment"?  ☺

Ethan and Mary made the newspaper!

{Torch Run Video - Don't pay any attention to the annoying arm interfering with the shot toward the end of the video, LOL.  I love how there were people I didn't know, cheering Ethan on!}

Always happy when Daddy is around!

Waiting for the next game!

On the move!

Giggles!

He was actually pretty good at this game!

Making baskets!

Proud Daddy & Son!

He was really good at this, too!

On Wednesday, Ethan participated in his first "official" events (you have to be 8 years old in order to officially participate).  His first event was the softball throw.  He placed 5th, which may have been by default in his bracket because there were some awesome arms that threw before Ethan!  And, I don't encourage throwing much, LOL.

Almost ready to throw the softballs!

On to the next event!

His second event was the one that we had looked forward to the most- the 50m assisted walk.  The weather was beautiful, but B-R-R-R-R COLD!!!  The temp was fine until the wind blew- *shivers*.  This didn't make for a happy camper, AKA:  Ethan.  Even with being grumpy and tired, Ethan did a great job and placed 2nd place in his heat!!!  We are all so proud of Ethan and his improvements with his walking!  I would like to send a shout out to Dr. Fuchs, Ethan's neurosurgeon, for de-tethering his spinal cord and making it possible for Ethan to compete in a walking race for the Special Olympics!!!

{Video of 50m event!}

Ethan refuses to stand or even sit on the podium- maybe next year...

Congratulations to all of the athletes!!!  What a pleasure to see all of you competing!