I fell in LOVE on Valentine’s Day – and not with a person

Today, I fell in love. Hard.  With a dog. 

 

Wait! Don’t stop reading here!! This is important!  This is not some dumb dog post!

 

I’m not a “dog” person. Ok.. I like them, but I have never really shed a tear for a dog. They are nice to have around. The are fun. They can be a great companion. DSC_0204

 

Today, I cried big fat tears.

 

We met MIXIE.  Alexander’s seizure dog.  If you don’t know what I’m talking about – you can read HERE about how we fundraised and why we needed this dog. If you didn’t read yesterday’s post… it is a good one, because our introduction to Ohio was less than stellar.  But, today… today was magic.

 

So, I really didn’t know what to expect.  I mean… we were getting a dog that was supposed to alert us to seizure activity.  But – I had all these unanswered questions:

What else would this dog be able to do for us?  Anything? Were we wasting all this money?  I knew these dogs could be trained to do many things, but … we didn’t even know what to ask for.

 

OMG. OMG. OMG.  They trained Mixie to do it all.  No kidding. I cried.

 

Mixie can is trained to do the basics, like walk next to us, sit until “released,” lay down until “released” – (think of this potential at school… the dog just lays there – not causing any commotion in the class room), stand, etc.  But that is not all… Mixie can also: Turn on and off lights. Open and close doors; from both directions.  She can get toys that Alexander drops or are laying on the other side of the room and bring them to Alexander or put them in a box.  She is trained to stand for periods of time to help Alexander with stability.  She is trained to help Alexander redirect any “tics” he might have or develop into petting.  She is trained to provide deep pressure to help calm him (he loves deep pressure.)  She is trained to help him to not “wander off” – there are specific things she does – and we’ve seen it in action. So… imagine this – in 2 years, Alexander is walking.  Mixie has been a living breathing motivator to help him learn to stand and walk and she is trained to do this, and then …. she is trained on how to keep Alexander from wondering off while I write out a check at the grocery store or into traffic, etc.  I plan to hold Alexander’s hand – but you all know that holding a writhing “toddler” for years can be demanding. Imagine it…  Not only that – but … let’s say that Alexander doesn’t need some of these things for a few years.  We can bring Mixie back and they will do a brush up for the skills she now needs to remember.

 

Four Paws for Ability – I think I love you. Mixie, I know I love you.  I knew this would be “life changing” – but I meant in the scary sort of long term way.  I didn’t realize it would be life changing every day.  This is only the first day. My brain is taxed from trying to learn all the commands.  This is all I can eek out today.  But, I do have pictures. Enjoy. We love you – who love us. Thank you again…

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Alexander reached up to hug Mixie. … I don’t think we are going to have to worry about bonding. 

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Thanks, Shell.  As Always, for letting me Pour My Heart out – even if it is about my love for our new dog.

 

 

 

My First Troll

I knew it was going to happen.  I mean…. how many times have I told other bloggers, “Ignore them! They are trash!” “They suck the life out of you.”

 

It was only a matter of time.  Those words are easy to say.  It is easy to comfort someone who has been smacked by a hurtful phrase or comment.

 

It is hard to hear.  Even though the words keep playing in my head, “Let it go.  They are trolls.  You know trolls suck.”  … I can still see that hurtful comment.

 

Dear Troll,IMG_1087

You suck.  The end.  If people want to know what words brought me to tears – here they are.  In mini size because that is about all I think of you. Mini size.  Also – to future trolls – I will not acknowledge your presence again.  I will just delete and smile and post something that says L.I.F.E.

 

So how about this:

We Love Life here.  The twins went roller-skating tonight. It was awesome:

 

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Addison wasn’t totally sure she wanted to skate at first. Of course – Andrew was right out there.

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It didn’t take long for Andrew to decide he needed to do tricks like the “big” kids.

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And just like that – Addison wants to do the tricks too.  “Here Addison – let me show you.” L.O.V.E.

 

And… Just in case you are still wondering how “happy” we are.  Here is a video shot last week. Still Laughing.

 

So… Officially – I hate trolls.  I have always disliked them – but from afar.  When they attack my son, my “Momma Bear” instincts come raring out.  I want to hunt down the troll.  I want to scream in rage that someone would write something – so hideous.  So hurtful. To a baby.

 

But, those feelings would rot my soul.  So, I will turn that negative comment… that troll into some positives.

1. An excuse to show off my happy kids.

2. And excuse to show off my beautiful kids.

3. An excuse to show everyone how happy my heart is.

4. We must have hit the big time.

 

**Future trolls… No attention will come to you on this blog. FYI.  Just a simple delete. **

 

Thanks Shell….

Sweet Boys

I already knew I wanted to do the “Memories Captured” link-up.  I love pictures.  I love the raw power of them.  And I love the idea that I can put the raw power of my words with the pictures.

 

I had several pictures picked out.  I couldn’t decide… which one was the one to use to describe my family (or part of my family) at this time?

 

Nothing seemed right.  I had plenty of photos to choose from. I had plenty of words to describe each picture.

 

And then I stumbled upon this one. Even though this was taken a few months ago, it perfectly represents my heart today.

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The twins came down with Pink Eye on Friday.  It has been a brutal weekend trying to keep them away from Alexander – who can not get sick: he is getting tubes put in his ears tomorrow.  Every time I turn around, one of the twins is trying to cuddle Alexander.  It makes my heart melt.  And breaks my heart to tell them, “Get away from your brother,” when we have spent the last year and a half making sure the three of them were connected. 

 

I will be a happy Momma when they can cuddle after bath again….

Thanks, Mama Wants This – for letting me share!

 

I will FIX you

Most of you who read regularly have probably seen the video I made about our feelings when we first learned Alexander had Wolf Hirschhorn Syndrome.  If you haven’t seen it… here it is.  If you have – skip below. It gets better.

 

A close friend of mind made a video that touches me in such a way – that I need to watch it every once in awhile.  She reminds me constantly that God’s plan is divine for each and every one of us.  She doesn’t need to “fix” her daughter.

 

 

I’ve been struggling these past few weeks with sorting this out.  I posted a little bit about this HERE.  This fall has been pretty brutal for Alexander.  4 ear infections, one UTI, a bought with Pneumonia, and 3 seizures.  It looks like we may be headed for surgery in the near future.  We are going to see a urologist and then move on to a nephrologist. (they look at the kidneys.)  We have “classic WHS kidneys.”  – We shall see to what extent the kidneys need “fixing” – but it does look like the urologist will be “fixing” us up so he doesn’t have so many UTI’s.  We are also going to see an ENT to “fix” Alexander’s ear infections.  Probably we will have tubes put in.  That seems the most logical choice.

 

Again. I will move mountains for my child.  I do not want him to suffer.  If tubes are needed, then tubes it will be.  If other surgeries are necessary, then those will be also.

 

Our appointment on Friday was with the Neurologist.  *sigh*  This is where the “how much can I ‘fix’ Alexander?” eats at me.  His illnesses have caused him to fluxuate in weight gain.  He’s been growing longer and not chunkier.  He seems to have a loss in muscle tone.  Ok. He’s lost muscle tone.  But he has this increase in appetite.  SO…. I’m thinking that his dose of Keppra is making him a little “off.”  We switched to name brand (which controls better) and upped his dose.

Should I ask the doctor to lower the dose a little?  To avoid the zombie – like state I’ve seen him spiral into several times?  What if he has a seizure then?  How can I help him? without needing to “fix” everything about him?

 

Usually I’m ok.  I can balance these dualities pretty well.  This past week I was not that fine.  I kept replaying my friends video and wondering if I was pushing too hard.  Especially when it came to the neurology visit.  Keeping the seizures away is our number one priority.  All else must take a backseat.  What if he just doesn’t have great muscle tone?  What if that is the price we must pay to keep the seizures away?

 

Our visit went well.  We had a great talk.  We made some plans.  Alexander is going to have some good Omega 3’s entered into his diet.  I’m going to try to put some weight on him and see if he can “grow” into his dose.

 

Still… I must tread with caution.  To help my son, but not need to “fix” him.  Something I will continue to ponder.

It is So Much Work

I need to choose my words carefully.  I don’t want to offend anyone or misrepresent my true opinions.

Got everyone’s attention now?

There are these tools.  For children with special needs.  These … amazing resources.  They give life (literally) where life would not have survived.  They change lives. 

- In the literal sense… Alexander’s feeding pump has saved his life.  His g-tube has allowed him to be hydrated and nourished; I know he would not have survived the past year without it.  You have no idea how hard that is to actually say. Because the reality is I hate that thing.  I’m the mom that dreams of ripping that thing out. Who dreams of the day when we don’t need it.  Alexander didn’t use the pump regularly until last spring.  You can read that post HERE.  And…. then he just didn’t eat enough.  Went way down hill….. This past summer, there were days where he was not oral at all.  *sigh*

- In the life changing ways… we have standers, a wingbo, sensory toys, AFO’s, Vision therapy tools, a z-vibe, the iPad, and tons of other things to help Alexander develop skills he might never have gained.  I really feel these therapies are changing the things people (especially with Alexander’s syndrome) can achieve.  Sometimes older children are scary.  But, what if that is just because they didn’t have access to all the things we have now?

Ok. So here comes the controversial part.  To help a child with disabilities reach their full potential requires a ton of work. And… I’m not only talking about from the child. 

IMG00019-20101105-1136Don’t get me wrong.  Alexander is the hardest worker I know.  He puts more energy into sitting up than I put into any activity.  And often I find it ** tactless ** when parents of children with special needs whine.  This is a little different.  It is not a whine.  It is not a post about “why is this happening to me?”

But … on a very regular basis – I beat myself up because I haven’t done enough to help Alexander that day.
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In case you missed it … Alexander is eating now. And I mean eating like a champ.  He is almost 100% oral.  I say almost because he is probably just shy of his caloric mark.  Here is where it becomes a lot of work.

* If Alexander is fed on the pump – all I need to do is calculate how many calories he needs, formulate a feeding plan, and pump it into his stomach.  (In all honesty…. easy)  There are other things that go into it… but you basically figure out  the best nutritional cocktail and serve it.

* I have fought the pump since the beginning and it has required a lot of extra time and energy.  And now… It is a ton of work.  Not only does it take him a long time to eat (time that I can’t do much else), but I must also count every single calorie and nutritional aspect of what he takes in.  Do you know how many calories are in 3/4 of an egg over easy? Or in 1/2 slice of bread? with a little bit of butter?  How about how many calories are in an oz of cheese? Or is it too much to give cheese and eggs on the same day because of protein overload?  How many calories are in “some” pizza? Or “some” pork? Anyway – you get the idea.  It is not easy to figure out how many calories he is getting during the day to recalculate how many he needs to grow.  It is so much work. I’m not going to lie. It is hard work for him to eat and it is hard work for me to help him to eat.

IMG00116-20110317-1828* The same respect, every piece of physical therapy equipment takes so much work.  Alexander has to work so hard to move those muscles, but I have to put his braces on, his shoes on, give him time in the stander, adjust the stander, put him on tummy time, help him roll over, help him grasp for things, make the signs for “more” and “all done” when he is eating.  We also have to use the z-vibe on him, mimic his coos, practice sitting, practice with the iPad technology…. practice.  It is labor intensive and … work.

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It is really a labor of love.  I once heard a woman speak about how she spent 2 years touching her son on the shoulder to indicate when he should put the spoon to his mouth… until he was able to self feed. Two Years.

I am so grateful for all these things to help my son.  But, there are times when it still really lies on the motivation of parents to move past these tools… to put the tools to necessary use – so development happens – and they aren’t necessary anymore.  So much work.

So next time you see a parent of a child with special needs.  Celebrate any milestone you can. And give the child a high five. … and the mom a hug. Because she probably needs it. 

Thanks Shell…. For letting me Pour My Heart Out.

Somebody Catch That Elephant!

Problem:  I am a buzz kill.
Solution: None.
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I went to a party last night.  I took my date… a very handsome man. 

And… I’m nervous.  A lot of people haven’t met Alexander.  Sometimes I just want to shake that elephant in the room. 

It’s not that people don’t know…. or that we can’t talk about it.  But… all these topics come up and conversations die out.

We are not a newborn… but we fit into newborn status.  People comment on how cute he is. Because he is.   People say how good he looks. Because he looks good. … but, he was tired. He didn’t want to sit up or hold his head up or play with anything.

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And I could feel it… the worried looks.  That Alexander was still so “newborn.”

And that Elephant in the room is off and running.

Friends say things and it seems I can never have the right response.  I feel defensive, “he isn’t feeling well. He normally sits so big.” 

I don’t want them to pity me so I try to make light of the questions asked, “Yeah, nothing like forgetting to feed your kid.” or “here’s a photo for Bad Parenting Magazine – how to smoosh your kid on the couch between 2 fluffy pillows.”

I’m probably over sensitive.  I don’t want to be a downer because people don’t know what to say.  And the truth is… sometimes I don’t know what to say either.

I’m better when I can write it out.  I’m better when I can think before I commit words to a page.  I’m better when I have a chance to use backspace and erase words I didn’t mean to say. 

Dear Friends,
Please continue to invite me to things.  That Elephant is growing smaller… I promise.  I need to get out.  I need to practice.  I know I have to work on it.  I need to build a little more confidence.  I need to chase that Elephant out of the room.  Just… let me keep being “normal” until “normal” is all we are.
Thanks,
Owner of the elephant.

Didn’t You Know I Love You Too?

In case you haven’t been following along… Here’s what we’ve been up to the last week or so…
seizure
hospital
fights with doctors
blah blah blah
home
love
back to normal
blah blah blah.
family time
awesome students
fun lessons
blah blah blah
Got it? That’s pretty much it in a nutshell. (Throw in a few shin splints and barely runs)

But that is not what is on my heart.  My heart has been focused on what I saw last week.

The look in my son’s eyes.  The look in Andrew’s eyes.

Andrew has been a wreck this past week.  He’s kicked something or someone every day…. repeatedly.  He’s acted out, he’s back talked, he’s hit, and he’s bullied.  He has taken the most simple activities and turned them into show downs between us.  He will defy me just to defy me.  If I say, “let’s go take a bath,” he refuses; but If I say, “fine. We won’t take a bath,” he will run to the tub instead.

It isn’t Andrew.  It isn’t his fault.  This post isn’t really about him lashing out.

It is about the fruition of my “Mommy Gut Fears.” 

I knew this day would come, I just prayed it would take longer to get here.  I knew the day would arrive when the twins would put together Alexander and our absences.  It happened last week.  I saw it on Andrew’s face when I walked out of the store and Alexander was having a seizure.  From there, our ‘emergency routine’ was enacted.  An aunt was called.  The twins were taken care of.  They spent the night away from us.  They didn’t return to us for many days.IMG_0283[1]

He put it together.  He always was a bright kid…

What am I to do now?  Now that he knows… in the way that a three – year – old “knows?”  That Alexander has needs and sometimes those needs get put first.  *sigh*

He doesn’t understand the difference between life threatening needs and normal life “wants.”  He shouldn’t be expected to.  He is 3.  But… it doesn’t stop the fact that he feels…  (so many words come here that I can’t even begin to write them all.)

I wonder if a person can’t understand the true magnitude of a mother’s love until you have children yourself?  But really….
I wonder if a person can’t fully understand until they’ve had more than one child? Please allow me to explain – I’m not trying to minimize the motherly feelings of anyone who has one child.

I remember when a good friend of mine was pregnant.  She was already a mother and … in love with her daughter.  I remember asking her if she worried that she would love this baby as much as her daughter.  She said, “I know I will… but I honestly don’t know how I will.”

She wasn’t alone.  When I was pregnant with Alexander, even though I had two children already, I remember thinking… “I know I will love this child beyond belief, but how will that be possible when I already love the twins so much?”

Truth.  I love them all.  Heart achingly so.  Breath Takingly so.  Equally.  Completely the same.  And Completely different.

I can’t explain it to anyone.  I think the only way to truly understand it may be to live it.

Dear Andrew, IMG_0544[1]
Please understand that I love you more than words could ever express.  I would lay down my life for you.  I would move mountains for you.  Please don’t question my love for you.  Please let me cuddle you.  Please let me kiss away your tears.  Please do not turn to anyone else.  Please know in your heart… let me prove to you that I love you as much.

Dear Addison,IMG_0506[1]
You are such a blessing.  Please know that I love you also.  For your feisty spirit and your amazing heart.  I love the way you say “Alay- zan – der.”  I love that you say, “where’s Andrew?” about 100 times a day.  Please remember that I would travel to the end of the Earth for you, my baby girl.  Please allow me to continue to prove to you that you matter too.

Dear Alexander,IMG_0541[1]
Please don’t feel left out.  I’m so torn.  I need to cuddle them a little extra right now because they are hurting.  Please know that this is completely on my shoulders.  Please remember that I love you.  You are a blessing to all of us.  Your brother and sister are proud of you.  They love you.  They have a bit of 3 year old jealousy, but this is to be expected.  Just know that needing help is never something you should be ashamed of.

My post of my heart is also my most difficult aspect of parenting right now.  How can I convince all my children that I love them equally?  It really does seem like a foreign concept… that you can love so many people so much – but … I do. 

Thanks Shell…. For letting me Pour My Heart Out

I’m linking up with Mama Kattoo… I know it’s sort of cheating – but it was her writing prompt that gave me some clarity on this situation.

3 am

You know who is beautiful at 3am? My baby boy.IMG_0421

I watch him… as I promised.  To get us this room.

He sighs. His chest rises and falls. His eyes are just cracked a bit.  His downturned mouth… is slightly up.

I love that boy.  That miracle baby.  A few hours ago they went for the femoral artery to get blood.  They had to do it twice.  And when I walked back in the room… he let me soothe his tears.  I was too weak to stay in the room with him – my fighter baby – but he still let me comfort him.

I would move mountains for that kid.  To see him BE.  Just … BE.  No more seizures. No more arterial sticks.

Earlier today, I just had to get the anger out.  If this blog is my outlet, then I have to be able to be angry every once in awhile.  It was anger that stems from Mommy Fear.  Fear for my son.  My baby who cannot speak for himself.

I said I wasn’t going to do this, but my heart has mended.  My baby hero has once again shown me the way.

I am thankful for LIFE.  His life, Andrew’s life, Addison’s life, Ray’s life….. My parent’s life (including in-laws – because they are my parents just as much)… those who love us…. LIFE

Speaking of LOVE… I am thankful for it.  Today my friends and family lifted us up in prayer.  My friend, who has precious little time to spare, listened to my tears of frustration.  My colleagues will ask how we are.  My students will want to see a picture of Alexander smiling in reassurance… the way kids do. LOVE in all forms.

I am thankful for a seizure.  We have a shirt covered in Alexander’s seizure “aura” to send ahead for his dog.  We are to send 2 shirts… One with the seizure sent and one without.  Our dog will be prepared.  (Alexander’s seizure started while he was in his car seat waiting in the van…. It was the grace of God that gave this seizure a new look and sound, or Ray would have never known he was seizing.)

I am still angry with insensitive people who forget that a person’s life is in their hands.  I will still be calling about this.

But life is more than anger.  I needed to blog it away… and almost immediately I could feel the tension release from my fearful heart.  The anger is poison that threatens to eat all those blessings.

My heart doesn’t have room for it.

I’m Not Ready

Dear Andrew and Addison,

I started this whole post… starting from your birth story.  And then I scratched it… because your birth story isn’t really the words I need to tell today.

Truth is, I’m not ready.
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I’m not ready for you to be 3.  You can’t be 3.  Just yesterday you were in the NICU.  Just last week I was pregnant.  Being pregnant with you was one of the true blessings in my life.

Addison, you were baby A.  The lowest. The official “first born.”  The hardest to name.  Full head of hair and a perfectly beautiful face.

Andrew, you were baby B.  Feet always in my ribs. Bald, beautiful, and truly a Momma’s boy.  I have a secret to tell you… Your name is not really Andrew.  It is Raymond Andrew – the fifth.  Maybe you will learn it later – like when you are in kindergarten and the teacher calls your name and you don’t answer.
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I cried the day you were born.  I was drugged and it was too dangerous for me to go down to see you in the NICU.  I begged and pleaded with the doctors and nurses to please let me see my babies.  I’ve loved you since the day you were dreamed in your Daddy and my heart.  I could not bear to be away from you… even for those hours.  Here were the pictures they sent me instead.

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Those pictures were not enough.  Only when you were placed in my arms could I feel like a Mommy.  Your Mommy.  The most amazing gift.  How did we manage to create twins?  Born at 33 weeks.  21 days in the NICU.  And completely amazing…

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Only a blink of an eye passed before you celebrated your first Christmas, first Easter, were Baptized, and enjoyed the long days of summer.
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Then … you were a year old. A year of life. A year of celebrations, help, more help…  A year of LOVE.

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How did another year pass by?  Where did that year between one and two go?  Six months in, we added Alexander, and I admit … things became blurry for awhile.  But I think these things happen to others also.  I think all moms feel like this time goes so slowly when you are living it, but so quickly at the same time.

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I’m just not ready.  I’m not ready for the “grown – up-ness”  Honestly? You can go back into diapers.  I’m not ready to kiss my babies goodbye.  I’m not ready for the preschool I know you need.  I’m not ready to give up the snuggles you no longer crave.  I’m not ready for the big boy and big girl cups and spoons and forks and … I’m not ready for you to be able to wash your hands by yourself.

Tomorrow is your birthday.  3.  It is happening, whether I’m ready or not.  You  are growing, whether I’m ready or not.  And you are growing into such amazing children.  I’m really proud of the people you are becoming.  I love you…. you who made me a Mommy.  You who opened my heart to this beautiful thing called unconditional love.

Happy Birthday, sweet babies.

Thanks Shell– for letting my Pour My Heart Out.

“My Sweet” Third Birthday

This is the party we debated.  Debated sounds more diplomatic than any other term, right?
This was the party Ray planned.  This was the party I attended.
This was the most rockin’ third birthday party ever… And I will forever be grateful for all the hard work my husband put into it.
Not only did we have an opportunity to make memories with our children, but we also had the opportunity to share it with our friends.  I have to tell you – this part of the party felt the best.  As I’ve said before, sometimes I feel like we are the recipients of so much generosity.  It was so nice to be able to share it with others.  So here you go…. The Twins “Sweet 3rd Birthday Party”.
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Welcome to the Wild Wild West. 

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There were bandanas.  There were hats.  There were pumpkins.   There was “pin the spot on the cow.”
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There was a hay ride.  You can’t actually see Andrew and Addison on the ride – but they are in the front right corner.
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The corn maze… and featured in the center – the reason we made it through the corn maze.  He’s a clue genius!
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See small children walk the corn maze.  See small children get tired.  See small children suddenly become heavy children….
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The petting zoo was the hit of the day.  Everything was “touchable.”  There was a calf, a bunny, chickens, peeps, and a few pigs.  All the kids LOVED the little animals.  (some loved them a little too much…)
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They also had an old fashioned water pump.  The kids pumped rubber ducky’s down the pipe… or drank from the well.
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You probably recognize Caleb from other pictures.  He’s Andrew’s BFF and Hero all rolled into one.
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People closest to our heart.  It is amazing how much our family loves people we didn’t know a few years ago.
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Happy Birthday, sweet babies.  I’m glad we celebrated your birthday a few days early – because I’m not really ready to watch you enter the world of “three” yet.  Those tears will come later this week.  Saturday was a day for laughter and memories… with good friends and great ideas.  Thanks, Ray, for making the day one we can all remember.
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