Happy Birthday, Jennifer Kay!!!

Today is our niece's 23rd birthday!  WOW!!! 

Happy Birthday, Jenn!

We love you and miss you SO much!  We are so proud of you and all of your accomplishments!  Now, get your boo-tay down here to visit!  :)

Day 9 of Giving

For the past few weeks, I have been taking Hope (a toddler I care for sometimes) over for playdate with my friend Carrie's girls.  It is certainly a transition for her to be around other kids and it gives me a chance to get to socialize with Carrie.  Today, I brought Carrie a hot chocolate from Panera Bread.  It was kind of only warm chocolate by the time I got it to her, but Carrie's daughter Ella enjoyed it too!  A little gift of warmth and everyone is happy.  :)

Day 8 of Giving...Praying for Liz!

Today, I am SHARING.   I am sharing something with you that is very close to my heart.

My friend, McKenna's, sister-in-law Liz was recently diagnosed with a cancerous tumor above her knee- OSTEOSARCOMA.  Liz is a very beautiful and active 14 year old young woman, and she is NOT going to let this little thing called cancer get her down!!!  This young lady is so mature and has such a GREAT attitude about her upcoming battle.  She amazes me and I have never even met her!  Liz's blog name is LIZ IS A SURVIVOR.  Yep, I would have to agree with that statement!  Please keep Liz and her family in your prayers and thoughts as she fights the beast.  CANCER SUCKS.

Be sure to stop by Liz's blog and leave her a note of encouragement!  Also, if you are on Facebook, be sure to go by TEAM LIZ's group page and join to show your support for her!

Day 7 of Giving

Today, I decided to scroll through my address book with my eyes closed and pick three random people.  I then sent them e-cards to let them know how much having them in my life means to me.  I hope that those three people's days were a little brighter today!

Day 6 of Giving

Today was easy.  I went to the grocery store and saw that there were bags for sale that were filled with food to go to the food pantry's.  So, I bought a bag.  There was, to my surprise, quite a bit of food in the bag!  May someone's holiday be enjoyed with a full belly!

Day 5 of Giving

Today, I really didn't do much.  Scott GAVE me an extra few hours of sleep this morning.  I did not get up until after 11, I think!  WOW!  But, it felt SO good.  I love me some good sleep, LOL.

My friend, Michelle, invited me and Ethan (Scott was going to the Wake Forest soccer quarterfinal game against UCLA) over while she made a boat load of cookies.  Since Scott was going to be gone anyway and I could use some time of friendship, Ethan and I were off to take in the delicious smells of baking cookies.

I decided to make a quick batch of deviled eggs before I left and took them over for her family.  I am not sure if you can even compare deviled eggs to cookies in the giving department, but that's all I had and that's what I did.  LOL.  Michelle and I both gave each other great conversation and fellowship.  We should all make time to connect with our friends.  ☺

And, Ethan was able to show his love of feet and wiggling toes when Kayleigh put her feet up on the coffee table.  So glad that Ethan is not shy at all about his little fetish...my feelings on that may change as he gets older.  

Come Lay "Em Down

Come Lay 'Em Down

By:  Need To Breathe

Come down to the river
Come and let yourself in
Make good on a promise
To never hurt again
If you're lost and lonely
You're Broken down

Bring all of your troubles come lay 'em down
All you sinners
And the weak at heart
All you helpless
On the boulevards
Wherever you are now
Whatever evil you've found

Bring all of your troubles
And come lay 'em down
We're all tied to the same old failings
Finding shelter in things we know
We're all dirty like corrupted small towns

We'll bring our troubles
We'll bring our troubles lay 'em down
All you rich men
And the high above

All those with And without love
All you burdened Broken down
Bring all of your troubles
Come lay 'em down

I ♥ ♥ ♥ this song!  The lyrics really speak to me.  I also imagine dancing in the fellowship hall at Challenge Farm with the kids to this song.  ☺

Day 4 of Giving

I am not sure that this, technically, qualifies but I am rolling with it anyway...LOL.  On this 4th day of the 12 Days of Giving, I want to give you a REQUEST.  My request to all of you is to become a registered bone marrow donor and a blood donor.

When Ethan went through leukemia treatment, he received countless units of blood product- red blood, platelets, IVIG...  My son's life was saved because a selfless person walked into a Red Cross tent, bus, office, or event to give blood.  There is no way for us to ever know who gave a part of themselves in order to save lives- one of which was my son.  We are forever grateful.

While Ethan never needed a bone marrow transplant- THANK YOU GOD!!!-, both Scott and I decided to sign up on the bone marrow registry when they held a drive at the hospital.  It was a simple blood draw, we got our donor cards in the mail, and that was it.  Then, one day a call came...

I got a call from the registry asking me if I was still willing to be a bone marrow donor.  OMG!  OF COURSE!  I was a 6 for 6 match for a 50+ year old man with lymphoma.  I was sent the paperwork and I immediately filled them out.  Everything was set to go to the next step UNTIL I volunteered the information that I have rheumatoid arthritis.  Nowhere on the health questionnaire did it ask about RA, but because it is a autoimmune disease, I felt the need to ask and disclose.  Sure enough, RA is on the black list of conditions that makes you ineligible to donate bone marrow.

I was crushed.  I cried for this man whose life was literally within me and that I couldn't save- or at least try to save.  I pray that there was another person out there who was a match and able to provide what I could not for that man. 

I highly encourage you to go to the National Marrow Donor Program and the Red Cross and become a donor today!

Day 3 of Giving

Today is Day 3 of the 12 Days of Giving and what did I do?  I gave a SMILE.  Yes, a smile.  I saw someone who was, obviously, having a bad day and I just gave them a smile.  She was able to even crack a smile back.  Sometimes you don't need words to encourage someone and lift them up, sometimes a smile is all they need.

Day 2 of Giving

On this 2nd day of giving, I gave an extra dose of hugs and snuggles to my Hope (a toddler that I love and care for some days).  Today's gift really wasn't hard to do as it is so easy to love on children, but I made sure to give just that little extra so she had an extra sparkle in her eye.

12 Days of Giving

My friend, Bethany, is hosting 12 Days of Giving for the first 12 days of December.  This is about all types of giving, big and small.  I am going to have to try and be creative here...LOL.

So, on day 1 of 12, I gave TIME.  I really am not in a position financially to give much that way, but I do have time.  I gave my time to my church, helping adhere address labels for a congregational mailing.  Many would think of that as petty work, but it was quite enjoyable to be able to give back to our church who is always right by our side praying for our family.

"Free" Weight Loss Trial

So, I am driving Bubs to school this morning when the following commercial comes on the radio...it went a little like this: 

 If you have more than 20 pounds you want to lose and are not enrolled in any other weight loss program, you qualify to be part of our FREE weight loss trial.  Weight loss is guaranteed or else you do not pay for your trial.

 Huh?  Why would you pay for a free trial in the first place?

Happy Thanksgiving!

CHOP update

(For those who don't know what CHOP is, it is the Children's Hospital of Philadelphia.  I have been working on getting Ethan into the intensive feeding program since before summer but insurance keeps denying for us to go since it is out of state.)

I got the call on Monday.  I could tell what was going to be said.  Denied.  Again.

Ok, so for what this time?  They supposedly don't pay for out-of-state claims for non-emergent services or for services that are offered in-state.  That basically means that over the past 2 1/2 months, the reviewers were picking their noses and daydreaming into space because my referrals CLEARLY state that the services that Ethan needs are not offered in North Carolina!!!!  Geesh people.  Doomosses.

Now, on to the appeal process.  I have to wait for the formal denial to come in the mail, but yeah- I have to call their bluff and appeal.  It just really, really, really sucks that I have to go through all of this to get a service for Ethan that could very well help him stay safe when it comes to eating or manipulating objects in his mouth. 

I'm not a Mama Bear for nothing y'all....onward and forward!

A Very Special Gift for Ethan

For the past few years, we have been, oh- bah humbuggish.  We have not been in a prime state of economic means- from Ethan's leukemia to my lost job, and now to Scott's lost job.  As each year passes, it becomes more and more painful to not be able to be giving to others as others give to us.  I know that if we were the givers, we would not expect anything in return because it is just something we enjoy- GIVING TO OTHERS. 

Our Christmas tree has not been put up in a few years mostly because we have nothing to put under it.  We can also claim that Ethan would "likely" pull all of the ornaments off or just plain terrorize the tree, but honestly it's the absence of gifts.  It pains me to not have anything for my Bubs under a tree for him.  I hid behind the excuse that he likely won't remember this time anyway because of his cognitive age.  Also, Ethan has SO many toys that he doesn't even play with.  The age range of toys that may be appropriate are hard to look at (selfishly) because they may be appropriate for a 12 month old- heck, even a six month old depending on the skill.  So, being as that we don't really have any money to spend on Christmas anyway we didn't "waste" our time or money with buying toys that just end up in the attic anyway.  All of these excuses to simply not put up a tree and be reminded of what you can't give.

But, what can we give?  We can give tradition. 

I did not grow up with a Christmas tradition except going to my Grandparents house for Christmas dinner and presents- one of which was ALWAYS a box of See's Assorted Box with the yummy lollipops and gummies.  I guess this is why I haven't put so much into a Christmas tradition.  That, and we are celebrating Christ's birth and not some secular traditions.  Well, I think that you can have both.  Even though many are not celebrating Christmas to celebrate Christ, you really are.  To give is to love and God gave the ultimate for us because He loves us.

That was a lot of background blah, blah, blah to get to the point.  I was NOT going to put up a tree again this year- much to the disapproval of a very vocal friend (love ya!)- for the same reasons that I mentioned above.  Then, I started to change my mind.  I wanted to have at least tradition in pictures for Ethan.  So, I was mentally preparing myself for putting up the Christmas tree.  Then, I got a call...

Trish from our church called to see if we would like a Christmas tree.  ???  Well, there is a fundraiser for Brenner Children's Hospital every year called the Festival of Trees.  It is one of the biggest fundraisers for the hospital.  One of our church members sponsors a tree every year and wanted to donate it back to the church.  Well, our family was chosen to receive the tree.  We had no idea what it would look like, we were just so humbled that we were thought of for this amazing gift!  It ended up being a beautiful gift back to Ethan for all of the time he spent at Brenner's during his leukemia treatment and beyond.

The tree was delivered today.  I was at the bowling alley with Ethan when the delivery men called.  It was drizzling, so I didn't want them to leave it outside.  Thank God that our neighbor was home to go and open our garage!  Ethan and I arrived home this afternoon to this HUGE box in the garage.  All I could see was the topper- oh, what a beautiful creation! 

The tree is so perfect for us!  The majority of the ornaments are soft, so even if Ethan takes them off, we don't have to worry about it!  Special thanks to Connie Miller for sponsoring the tree and then giving it back to our family.  THANK YOU!!!  When Ethan came home today, he looked at this tree and just had the biggest grin!  This is HIS tree.  This is Ethan's tree.  He deserves it.  He deserves this tradition. 

Ethan, I am SO sorry for keeping this tradition from you for my own selfish reasons.  You will have a very special Christmas this year, I just know it!  Love you son.

New Layout is done!!!

Rebecca has worked feverishly on our new blog look!  I ended up having more ideas than I thought and she was awesome through it all!!!  I ♥ it!  Take a look at the header and see if you can tell me some of the extra's that were added!  ☺

The Faulkner Woodworks tab is still being worked on- stay tuned for that!  And, it will take me just a bit to get the blogroll going.  Let me know if you would like to be added!

We also have a new button!!!  It is on the right sidebar- be sure to grab it!  SO CUTE!!!

THANK YOU, REBECCA!!!

It's been a year

Since Ethan's tethered spinal cord release surgery.  Even though the doctor assured me that the surgery should be a fairly simple one, the fact that my baby's back was being cut open and his SPINAL CORD was going to be released made me beyond nervous.  I was elated when I was able to post this.  What a difference a year has made with Ethan's walking!  He still gets stubborn, but it's not because he can't do it, it's because he WON'T do it.  Sounds pretty typical. 

We are SO proud of Ethan's achievements post surgery!!!

Permission to Procreate?

This should be a requirement for some.  No joke.  Take a test, whatever...something to deem you responsible to have a child.

I know that seems extreme to some, and it is, but when you witness what I witnessed today you may change your mind.  A young boy at Ethan's school who has asthma was coughing horribly and wheezing.  Mom is called.  Mom says that the reason he's like that is because he was pushed on the bus.  Ok, wait...being pushed causes wheezing, coughing, and hives?  Check.  Mom also says that she took the boy to the ER last night and they didn't do anything.  Um, right.  I know that ER's get a lot of flack, but I know that if a child is brought in unable to breathe properly, he is going to be given a breathing treatment at the very LEAST.  Mom did not take said child to the ER, I am willing to put money on it.  Boy is asked if he has an inhaler.  His response was a little like this:  *wheeze*, Yes, *gasp, wheeze*, but, *wheeze* I, *wheeze, cough, gasp*, am *wheeze*, all *wheeze*, out *wheeze, gasp*.  Yeah, you're probably out because someone in the house used your inhaler to get high.  Poor kid.  My heart broke for him. 

So, Mom is asked to come get child.  She says that she will try to find a ride and Daddy's in jail.  I tell the teacher to give me the address and I will go get her!  I am then told no because they live in the most dangerous neighborhood, where a mother was actually shot before.  Well, since I wasn't really feeling getting shot today, I didn't argue. 

I made my opinion known that instead of waiting on Mom, that 911 should have been called!  At the very least, an ambulance would have oxygen for the boy.  Geesh.  I don't know if Mom declined the call to 911 or what, but it was some big deal to not call.  I was ready to do it myself but was asked not to.  I told Mary that if Ethan is ever choking, can't breathe, or has some other life-threatening situation, DO NOT CALL ME FIRST!  CALL THE FREAKING AMBULANCE and THEN CALL ME!  I know that she would, but I just felt the need to throw it out there. 

How much you wanna bet that this boy is back at school tomorrow?  *eye roll*

Cleaning out the Garage!

Scott is clearing things out of the garage and he has demanded that I get rid of some stuff (rightfully so).  Some of the things that I thought someone may like are:

Mary Kay bag (so nice, holds samples and such)...will post a pic later

Beauticontrol Bag...this one is so nice too, I think you can carry supplies in it or even a laptop.  Don't quote me on that one yet....pic later too

Duffel bags
Child swing just like this one, except in red.  For 3months- 3 years

I surely have MORE, but that's all I can think of off the top of my head.  If you know of anyone that would like any said items, let me know!

Christmas Deco

My sister, Kim, sent this to me in an e-mail.  Made me chuckle...

EMHE: My Experience

Just in case you haven't figured out what EMHE stands for...

Yesterday, I had the privilege of working on the new home of the very well-deserving Creasey Family in Lexington, NC for the ABC tv show, Extreme Makeover Home Edition.

I got to the site volunteer check-in right around 8am.  I made sure to take a "before pic" because I knew that I wasn't going to look too pretty afterward.  I was scheduled from 8am-2pm, but ended up staying a little over an hour past that.  On Day 1 of the week, the remnants of TS Ida came through and made everything a muddy mess!  Thankfully, my friend, Ellen, who had worked the site the day before had warned me about all of the mud and to wear boots.  This is when I am thankful for my "man-feet", LOL, because I can wear Scott's shoes.  I was able to wear his hiker boots and not lose my shoes in the thick mud!  And, I can guarantee that if I wore my own shoes, they would have been a gone'er, just like Mr. Rooney's.

The setup was surreal;  the tents, the masses of volunteers, the construction workers inside and out of the house, the spectators, the calmness, the generosity, the charity, the common goal and purpose to build a new home for this family that, probably, none of us even know...AMAZING, truly amazing.

Yesterday, I put on a hardhat with pride.  I moved excess lumber, decking, excess sheetrock, and an insanely heavy piece of something.  Scott said that it was probably some backer board for flooring- that was the worst part of my day because it was so heavy and it threw these RA-stricken hands into shock!  I also helped with crowd control, which was the most boring part of the day.  I ended up taking spectator's cameras and taking pictures for them from a different angle that they couldn't get to.  What else?  I swept and created a makeshift dustpan.  Oh, and I assisted in the moving of one of the big trucks in the driveway so it didn't get stuck in the mucky mud.  That's right, I am not just beauty, but brawn too.  HA!

My big highlight of the day?  Ed winked at me.  For those who don't know who Ed is, this is he! ------------------------------>>>>

So, I was standing on the staircase in the house as part of an assembly line to remove the excess sheetrock from upstairs and I look in front of me at the front door and he's standing there.  (OMG!)  I keep working as to not appear all starstruck, but I had to keep looking and then it happened:  EYE CONTACT followed by a wink.  Yep, now me and Ed are "like this". 

Overall, this was a blessing of an experience!  I am not in a position financially to help that way, but I do have time to give.  I gave time.  Hundreds of people have given or plan to give time.  I am sure some people signed up to volunteer just for the chance to be on TV, but from what I saw yesterday, they have to be very few because everyone was there to WORK (ok, except for some woman who kept pulling out her digital camera to take pictures, which is a big NO NO!  No pics of inside the house were permitted and yet, she kept doing it!  Grrrr...).  It was great to be part of a team to build a dream!

My pictures are not great quality because I, unlike some others, followed the rules and kept my real camera in the car and only used my camera phone outside (again, inside pics of the house were not allowed).

MOVE THAT BUS day is Tuesday, but unless I can make arrangements for Ethan and Loren, I won't be able to make it.  Here's to hoping!  ☺

Lookin' foxy in my hardhat, don't ya think?  The braids?  Well, that was a total improv since I left my hair tie in the car!  UGH!  It was HOT, so I had to do something with that mane of mine!!!


The last pic is just because I had to have a pic of the back of my shirt.  You can see how awful my hair was.  It was matted and gross.  I took a very long and HOT shower last night before crashing before 9pm!  I am very, very sore today, but it was ALL worth it!

Beautiful Song

This morning, I was looking at the new Challenge Farm website.  As I navigated the pages, I was on the "see farm" slideshow and a song began playing with the slideshow.  I had never heard it before, but it is truly beautiful.  It is "Winter Song" by Sara Bareilles and Ingrid Michaelson. 



As I listened to the lyrics, I was also reminded of the many orphans across the world waiting to be adopted before they are given their ultimate death sentence with life in an institution.  I have had quite a few friends who were called to adopt children with Down syndrome or other special needs from Eastern Europe- many of them traveled in these cold months and these lyrics struck me.  Read these lyrics, listen to the song and head on over to Reece's Rainbow, who currently have their Angel Tree project going.  Maybe YOU can make a difference in a child's life today?

Winter Song

Bum bum bum bum bum bum bum bum
Bum bum bum bum bum bum
Bum bum bum bum bum bum

This is my winter song to you.
The storm is coming soon,
It rolls in from the sea

My voice; a beacon in the night.
My words will be your light,
To carry you to me.

Is love alive?
Is love alive?
Is love

They say that things just cannot grow
Beneath the winter snow,
Or so i have been told.

They say were buried far,
Just like a distant star
I simply cannot hold.

Is love alive?
Is love alive?
Is love alive?

This is my winter song.
December never felt so wrong,
Cause youre not where you belong;
Inside my arms.

Bum bum bum bum bum bum bum bum
Bum bum bum bum bum bum
Bum bum bum bum bum bum

I still believe in summer days.
The seasons always change
And life will find a way.

Ill be your harvester of light
And send it out tonight
So we can start again.

Is love alive?
Is love alive?
Is love alive?

This is my winter song.
December never felt so wrong,
Cause youre not where you belong;
Inside my arms.

This is my winter song to you.
The storm is coming soon
It rolls in from the sea.

My love a beacon in the night.
My words will be your light
To carry you to me.

Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?
Is love alive?

A Man Worth Loving

Kim's new book, A Man Worth Loving, is out!!!  I have not been able to start reading it yet, but I am super-excited to!  Kim's writing keeps getting better with each and every book, so I want to encourage everyone to go pick up your copy of this new novel today!  I may even be able to work out an autograph if you buy some for Christmas gifts!!!  *wink, wink*

Under Contruction

My friend, Rebecca, is doing me an awesome favor and taking her super-creativeness and putting it to use on my blog!  I didn't give her much to work from, so it will be all her with her creative mind!  I cannot wait.  I am already excited that she found the nasty code that was on here that made my sidebar stuff show up at the bottom.  That was driving me Crrrrrrazy! 

I will be sure to announce when the remodel has been finished! 

Reflections Project Update

Remember the Reflections Project that I told you about here?  Miss Kayleigh WON the contest at her school!  This is the final submission with our Master Ethan, Miss Sassafrass Ava, and Mister Loveypants Ryan.  This picture was submitted for "BEAUTY IS...".  I think that she nailed it, how about you?

Congratulations Kayleigh!  We are SO proud of you!  While I am completely biased to the beauty of these wonderfully and perfectly made children in the project, I would like to say that the loving and accepting heart that Kayleigh has is also how I would define beauty.

Good job Michelle & Michael!  You have one amazing daughter!  (ok, you have TWO amazing daughters AND TWO amazing sons!!! ☺)

Halloween Pics

For Halloween, we went over to Theresa & Chris' for the 6th year- well, we actually missed one year in there because Ethan was in the hospital, but anywho...Ethan was a doctor and Madison and Delaney were chef's.  So cute!  Theresa and I talked about Ethan being Ratatouille, but that would have cost and his costume this year was 100% FREE!  Thanks to our neighbors for lending us the stethoscope and medicine bag (which actually doubled as the candy bag!).  Everyone had a lot of fun this year.  It rained a little, but it was not too cold and even not that wet.  Ethan walked up to all the houses that the girls did!  This year was the first year we didn't bust out a stroller or walker for him to use!  Scott did carry him when we weren't actually walking up to a door, but still!  This is PROGRESS!

After roaming the neighborhood, we came back and had some yummy finger foods!  The bonus of my evening was being able to watch the Bon Jovi documentary that was on Showtime!  Theresa had a free trial of it and was able to record it on her DVR!  Scott didn't exactly share my enthusiasm as that meant that we were going to be staying until close to 1am to finish watching it!  LOL!  It is safe to say that I still love my boys for Jersey, but I do NOT like to see Jon smoking!!!  Bon Jovi will be playing at the Today Show next week and the Wednesday before Thanksgiving...aw, to dream.

Neuro Appt. Yesterday

I took Ethan to the neurologist yesterday to discuss the possible seizure activity and she is concerned enough to want to refer him to the Epilepsy Monitoring Unit (EMU). The stay in the EMU can take up to three days. Ethan will be hooked up to an EEG (Lord, help me already!), meaning that he will have a couple dozen, if not more, electrodes glued to his head in order to catch any different brain activity. I asked if we could put a helmet on him or something to keep him from pulling at the wires, but she said that the turban/rope is usually sufficient. HA. You don't know my Ethan... I think some more arm restraints will be necessary.

Neuro doesn't have a clear reason why Ethan is walking into walls. Remember, this also happens when he is crawling, and he only falls to the right. She pretty much ruled out vertigo, he doesn't have fluid in his ears, and his vision has not changed drastically enough to cause such a ruckus "Can you describe the ruckus?". She also did some reflex stuff to see if there were any other signs of a retethering of his spinal cord. So far, so good on that one, but it did enter my mind. He should NOT be able to retether, but again, this is ETHAN we are talking about. E.T.H.A.N.I.S.M.S

Some people have asked me about sensory seizures. To be honest, I don't know a whole lot more than what the internet says and what Paula Aquilla told me last year. From what I know, they are very hard to diagnose because they are triggered by some form of sensory overload. People that have had them can describe how they feel after they happen, but Ethan can't. That is why all of this is even more difficult.

The definition on www.epilepsy.com is this:

Sensory seizures:

These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

I guess only time will tell after we get the test results back. Neuro said that we can probably expect to hear from EMU within two weeks. Fun times.

People First Language - A Reminder

Today is the last day of Down Syndrome Awareness Month.  It has been quite the challenge to blog every single day.  I found myself some nights running into the computer at 10pm just to make my 31 for 21 Blog Challenge post!  I made a point to make sure that everything was NOT about Down syndrome to make the point that our lives do not solely revolve around Ethan having Down syndrome.

I have been meaning to revisit the topic of People First Language for a while and just this morning my friend Jenna posted on Facebook this morning about it, so I am taking a moment to touch on it as well.

People First Language is simple:  Whether you have Down syndrome, Autism, freckles, cancer, or one leg, you are a PERSON FIRST.  We are not defined by labels or diagnoses, it is just part of who we are.

Examples:

COMMON INCORRECT VERBIAGE:  He is a "Down child", "Down's Boy", "Down Baby", or a "Down's kid".

CORRECT:Ethan is a boy with Down syndrome.

Down syndrome is just part of his genetic makeup- it does NOT define who he is. 

INCORRECT:  Ethan is a four-eyed boy.

CORRECT:  Ethan is a boy who is supposed to! wears glasses.

Some would say that this is just another act by the PC Police, I say it is an act by parents and loved ones of someone with a disability asking for respect.  Respect.  Respect.  Respect.

I understand that times have changed, and are continuing to change and that sometimes change takes time, so what I ask you all to try your hardest to do is this:  the next time you find yourself not using People First Language, make a note of it to not do it again.  I realize slip up's happen when you first learn new things, but with time, you will use appropriate and respectful language.  And, I know of a precious 8 year old little boy who would very much appreciate it, thank you. ☺

Triad Flight of Honor

The other night, Scott, Ethan, Baby Loren, and I set out to the Greensboro airport (PTIA or GSO) to welcome home the second Triad Flight of Honor.  We had seen the coverage for the first TFoH and were very emotional and we said that the next time around we were going to go and be a part of it.  We were going to go and be a few more bodies showing up to honor, salute, and respect the men and women of WWII who were being treated to a special trip to see the WWII Memorial in Washington, D.C. 

I was emotional thinking about it, but as soon as we heard the roar of cheers from the crowd as soon as the first veteran was being wheeled down the walkway in his wheelchair my heart started racing.  Then it happened.  A man directly in front of me saluted the men.  I choked up right then and there.  I just think that there is a certain level of respect for our military that seems to be lacking these days and to see the respect given to these people who served for US- these men and women who served to protect ME, to protect MY family, to protect YOU and your family...I was filled with emotion and I am very thankful for their service.

Unfortunately, the crowd was a little too much for Ethan, so we had to leave early but wow- what an honor to be there!

(Not the actual plane)  The plane was provided a water salute at departure and arrival.  Pretty cool, huh?

As we left, I started thinking about how I couldn't think of any immediate family members who were in ANY war.  I had to call my grandparents to see if my Poppy was in the military at all, or even Great Grandpa.  Nope, neither one.  Is that odd? 

A Birthday Wish

Happy Birthday to Ethan's Grandma Lynda, AKA:  Scott's Mom.  We hope that your day was fabulous!  Sorry that Ethan didn't get to call you tonight- he fell asleep at 5:30 and hasn't woken up!!!  We love and miss you!!!

BONK!

Ethan bonked his head around 4:30 this morning.  We don't know what he hit, but it could have been his TV stand.  It sure was a bleeder, as you can see from the blood stained band-aid. 

I got the band-aid off in his bath and it didn't bleed anymore, thank goodness.  He did rub it on his carseat, though and it did NOT feel good.  It then started to bleed a tad bit more, but nothing major. 

I am hoping that he just rolled out of bed and hit his head instead of possible seizure activity.  He was on sensory overload last night, so I will just be sure to bring it up at his neuro appointment on Wednesday! 

Confession

Sometimes, I don't want to see other kids' birthday party pictures/Christmas pictures/playdate pictures. It's pure jealousy and selfishness. Thankfully, I said "sometimes". I would really not like me as a person if it was an "always" thing.

I've really been trying to figure out why this *sometimes* bothers me more now than before and the only thing that I can come up with is this: When Ethan was 2, he was still in 12-18 months clothes. He was still so babyish. You don't get upset if a baby goes to a party and just wants to sit there or get into things...you don't care if a baby doesn't care about opening presents.

Now, that Ethan is obviously not a baby anymore- even by appearance, it is just harder. And, I have a slight suspicion that it is just going to get harder and harder as he gets older. *sigh* So, prepare for random "confessions and pity parties" because that's just how things are gonna roll when it comes to my emotions. Please don't judge, bare with me.

More Seizure Talk

I don't remember if I have mentioned this already, but Ethan has been having balance issues. This is a new development- within the past few weeks. He will walk into walls or even just fall over when crawling on the floor. He always falls to the right. My immediate thought was neuro since we already know that he has a smaller cerebellum, which affects balance.

I played phone tag for almost two weeks with neuro, but finally touched base at the end of last week. Ethan's neurologist wants to have his thyroid checked again. I asked if thyroid issues cause you to walk into walls and the response was "the thyroid can make you do lots of weird things". Ok, so I need to take E up to have a blood test. But, our appointment that was originally scheduled for March has now been moved up to next Wednesday.

My friend, Kimberly, asked me if Ethan had any fluid in his ears that may be causing him to be off balance. Hmmmm, Good Point- especially since his tubes fell out a couple of months ago. We saw the ENT today and Ethan's ears are perfect. No sign of infection or fluid, but he had Ethan do a tympanogram to check his pressures and those were fine too. He told us to definitely stick with the neuro idea because the only other thing that really might be causing an issue would be vision, but we have already cleared that too.

One thing that we also discussed with our ENT was how Ethan hasn't been sleeping very well and how on Saturday night after Carowinds, he kept waking up disoriented and kinda freaked out. I was laying down with him, so I saw his face and it was almost like he didn't know where he was and/or who *I* was for about 5-10 seconds. This happened numerous times during the night. I was surprised how many times he woke up considering the exhausting day we had at the theme park.

When I was telling our ENT about that night, he asked me if it seemed like he was having a seizure. I really hadn't thought about it until he said that, but considering the type of seizure I question he may have (sensory seizures), it would make sense ESPECIALLY because of how much sensory input he had during the day.

So, we are back to neuro. This will definitely be a topic of discussion next week. It makes it so hard to diagnose these types of things when the child is non-verbal and can't tell me if he has a headache. I just really think that there is something extra going on and my gut tells me that it's not his thyroid. But hey, I could be wrong.

Down Syndrome & Leukemia Article

http://www.medindia.net/news/Scientists-Identify-New-Chromosomal-Abnormality-in-Leukemia-Associated-With-Down-Syndrome-59671-1.htm Interesting...

A new chromosomal abnormality in acute lymphoblastic leukemia (ALL) that appears to work in concert with another mutation to give rise to cancer has been identified by scientists. They revealed that the latest anomaly is particularly common in children with Down syndrome.

The findings have already resulted in new diagnostic tests and potential tools for tracking a patient's response to treatment. The research, led by scientists from St. Jude Children's Research Hospital, also highlights a new potential ALL treatment. Clinicians are already planning trials of an experimental medication targeting one of the altered genes.

This study is published in the October 18 online edition of Nature Genetics.

"A substantial proportion of children with ALL lack one of the previously identified, common chromosomal abnormalities. Also, children with Down syndrome have an increased risk of ALL, but the reasons why are unclear," said Charles Mullighan, M.D., Ph.D., assistant member in the St. Jude Department of Pathology. Mullighan is senior author of the study, which involved scientists from 10 institutions in the U.S. and Italy. "Our results have provided important data regarding the mechanisms contributing to leukemia in these cases," he said.

Instead of the normal pairs of 23 chromosomes, individuals with Down syndrome inherit an extra copy of one chromosome, in this case chromosome 21. Chromosomes are made of DNA and carry the genes that serve as the assembly and operations manual for life. Down syndrome is associated with a variety of medical and developmental problems, including a 10¬-to-20–fold increased risk of ALL. But patients with Down syndrome rarely have the genetic and chromosomal alterations commonly associated with childhood ALL. Until recently the genetic basis of the elevated risk for these patients was unknown.

The new gene alteration was identified by St. Jude scientists following up on an earlier observation. They had previously found a recurring deletion in a region of DNA duplicated on the X and Y chromosomes. The region is known as pseudoautosomal region 1 or PAR1.

The PAR1 deletion was found only in patients with a subtype of ALL known as B-progenitor ALL. It was most common in children with both B-progenitor ALL and Down syndrome. In this study, investigators screened almost 400 children with ALL, including 75 patients with Down syndrome. The deletion was present in 7 percent of patients with B-progenitor ALL, but in more than half of the patients with both B progenitor and Down syndrome.

The deletion results in a fusion of two genes, P2RY8 and CRLF2. The fusion puts CRLF2 expression under the control of the P2RY8 promoter. As a result, CRLF2 expression jumps as much as 10 fold.

"CRLF2 over-expression identifies a group of ALL cases which were not previously well characterized, and suggests some novel treatment approaches that may improve patient survival. Patients with Down syndrome are particularly vulnerable to complications from standard chemotherapy, and could therefore benefit from novel therapies," said Karen Rabin, M.D., of Texas Children's Cancer Center and a study co-author. She is a Baylor College of Medicine assistant professor of pediatric hematology/oncology.

The CRLF2 protein normally forms part of a receptor where a small growth factor known as a cytokine binds to white blood cells known as lymphocytes. Both the cytokine, thymic stromal lymphopoietin (TSLP), and CRLF2 are known to play important roles in the development of immune cells known as T lymphocytes as well as in inflammation and allergic disease. They had not previously been linked to leukemia.

CRFL2 is the second gene implicated in development of B-progenitor ALL in patients with Down syndrome. The first, a gene called JAK2, was identified in 2008. JAK2 belongs to a family of genes that produce enzymes called kinases. If permanently switched on, kinases can trigger the uncontrolled cell growth that is a hallmark of cancer.

JAK mutations have also been linked to other cancers. Drugs targeting JAK kinases are already in clinical trials against a variety of blood disorders in adults. Additional trials are being planned against other subtypes of childhood ALL.

In this study, researchers reported a significant association between alterations in both the CRFL2 and JAK2 genes. Almost all JAK mutations were observed in patients with CRLF2 alterations. Almost 28 percent of children with Down syndrome and ALL had changes in both the CRFL2 and JAK genes.

"It has been a mystery as to why the JAK mutations in Down syndrome ALL are different from those seen in other cancers," Mullighan said. "Here we show that the JAK mutations in ALL are almost always observed together with a chromosomal alteration that results in over- expression of CRLF2."

When both the JAK mutation and increased CRLF2 production were introduced into white blood cells growing in the laboratory, those cells were transformed and no longer needed cytokines to grow. Neither genetic alteration on its own produced the same effect. Researchers also reported their impact could be weakened by the addition of drugs that target JAK mutations.

"We showed that the two proteins, CRLF2 and mutant JAK2, physically interact, and together transform white blood cells. This work has identified a new pathway contributing to the development of leukemia," Mullighan said. A next step is to determine if these mutations also interact in mouse models of ALL.

Parenting.com

Because October is Down Syndrome Awareness Month, the good folks over at Parenting.com highlight children with Down syndrome! Last year, I submitted a picture of Ethan that I adore from when he was two years old.

This year, I submitted one of my favorite pictures that Kayleigh took for her Reflections project- plus, I thought it would be really cool for a 15 year old to see their work gone national! :)

I was looking through the albums tonight and found that our picture was put in album 6! You can see it here!

What I found interesting was that both years, Ethan's picture is #17 in the album. It's a good number- Scott and I were married on the 17th. ☺

In the same album as Ethan are our friends, Kayla and Karli!!!

I haven't made it through all of the albums, but also in the same album as Ethan is a baby in Mariposa!!! So, to all my 'Posa family, be on the lookout for an extra-cute little bundle of Trisomy cuteness!