It's been so long. (How long is it?)...

..that I forgot my blogs name!  That's pitiful.  I don't know why I wait so long in between posts.  Too much has happened.  I feel like I start every post with that exact sentence.  Oh well, let's just start with today and I will try to post once a week.  Once a month would even be better than what's been going on! 

So, what's going on?  Here's the thing...things must have been going pretty ok for me to have let 4 months fly by without writing.  When I am really stressed, that's when I need to write.  It clears my head.  Well, stressed is an understatement.  Even as I sit here my heart is palpitating.  I don't recognize myself.  I have lost all coping mechanisms. Maybe I never had any and I was just never this challenged?  Either way.  Dominick has become a monster child.  I love him more than words, but I do not love his recent behavior.  It's gotten so bad that I am having anxiety attacks several times a day.  He whines and cries all day.  He tries to control every single thing and situation, he REFUSES to nap, even tho he is exhausted, and now he has started throwing fits at bed time too. Ok, so we have had nap issues for a few months.  But, he always at least had quiet time in his room.  Never has it effected bedtime tho.  Until this week.  And when I say tantrums, I mean "should I call the doctor" kind of tantrums.  Stomach curdling, blood boiling, total insane patient screaming. Just flat out refusing to go to his room. I have never experienced such a thing in my life.  I have been bothering the hell out of my friends, between complaining, venting and begging for help, it's just out of control.  I don't know what happened, maybe it has something to do with his schedule going out of whack in NY (Although, does that also explain the controlling behavior?) I really think that the bedtime issue is also about him wanting to control every situation.  It's a lose lose scenario.  By 4-5pm this kid is so beyond tired that he is a walking zombie crazy person.  This is even before dinner.  By bedtime it's just mayhem.  No matter how I try to distract, coerce, bribe or trick him into going to bed, the moment we hit the stairs he starts.  Screaming, kicking, crying.  He cries so bad that he loses his voice, can't breathe and can barely open his eyes.  It's mind blowing.  It's driving me I N S A N E.  Man, just describing it doesn't do it justice.  I'm tempted to attach the video I took.  Yes, I took a video - to show him in 15 years!

Well, I started this blog this afternoon.  Of course I didn't have time to finish it, how dare even attempt to sit down for 5 minutes.  Anyway, after saying all that and getting myself all worked up in knots for two days, guess who went to bed without a hitch tonight? Peaceful as can be even.  I have to thank Dada for that tho.  It seems like we balance eachother out JUST right.  When I'm a knotted up ball of stress, he's as cool as a cucumber and vice versa.  (for the most part, the most important parts, anyway)  It's a good feeling knowing that I can lose my cool and somebody will bring me back to reality with just the right amount of patience and good humor.  Thank you, Love.

So, that's what's new on the Dominick front.  Here's what's doing with Baby Eddie:

He's AWESOME!! haha, seriously tho.  Just this week alone he has hit TWO milestones.  TWO.  He's sitting up unsupported *with just a pillow to catch him if he falls* Just today he's starting to really get his hands out to catch himself, which is huge. We've been working on this in therapy for a long time.  AND he's been crawling.  Well, ok, backwards, but it's so exciting to see him trying to reach for something.  Stinks that he's going the wrong way and gets frustrated because of it, still exciting and adorable tho! 

Also, coming in just 2+ months we have the Walk for Down Syndrome! So excited about this.  I am going to dedicate another post just to this and to our amazing friends, the Romero's.  We have been absolutely blessed to have found them and can't imagine taking this journey, or "walk" withouth them.  More to come on that.....

Wait, what the heck am I doing sitting here?!!? The house is silent as can be, I must go enjoy it.  Who knows how long it will last?!?!

Stickers Are Magic! And Dominick is OCD

Man, I really hate when I wait so long in between my blog posts.  I never know where to start.  So much happens around here daily that I just couldn't go thru them all.  Nor could I remember all of it if my life depended on it.  Seriously losing gobs of brain cells by the hour.  Sometimes, it's so bad, I can't even form a sentence when speaking to another adult.  My mind just goes blank.  It's an awful feeling!  I have aged years over the last 3 months.  I'm gaining weight and losing my mind, simultaneously.  But, of course, it's all worth it in the end.  So, enough about my dwindling brain cells and growing pants size.  On to some serious cuteness, starting with Baby Eddie. 

Baby Eddie is growing by leaps and bounds!  He is in the chubby faze.  So love this part of babyhood.  (babyhood?)  I remember Dominick going thru the same growth spurt.  Eddie's cheeks are all filled out, totally plump and juicy and ready to nibble.  Oh, and I nibble, let me tell you.  He is just honestly the most beautiful baby I've ever seen.  I'm not just saying that because he is mine, he really is gorgeous.  See, I know Dominick was .... well, let me just say NOT as beautiful as a baby? ha, he looked like a little monkey! SERIOUSLY. take a look:

See? I told you! Ha, I have no idea WHERE time went or HOW this little monkey turned into the screaming, tantrum throwing, whiney, yet totally handsome toddler that now rules my house, my sleep and my sanity.  It happened when I wasn't looking.  One day he was this little itty bitty, the next he was talking in sentences and using the potty!  What!?  Well, I guess I can now say it's official.  Dominick uses the potty like a big boy.  He hasn't had a pee pee accident in almost a week, his unders or pull ups stay totally dry and he uses the potty on his own when he feels the urge.  It's incredible to me.  I have only one thing to thank for this miracle.  STICKERS.  Holy heck, what is it about stickers that is so magical??? The first few days he would pee every 5 minutes, just to get that magical little sticker.  Or, maybe it was to watch Mommy make a total fool of herself as she danced around the kitchen like a maniac?  Perhaps a little of both.  These little pieces of gooey gold have also helped with getting in the car.  The process of loading the boys into the car became war time around here.  That is until I introduced the Yo Gabba Gabba "Be A Good Boy & Get In Your Damned Car Seat" chart.  All of a sudden, all I have to say is "you want a sticker? Then be a good boy and sit in your seat please" and it was like he would wake up from his tantrum coma and be that perfect little boy that got lost in there somewhere.  So, yeah, STICKERS ARE MAGIC!   And, yes, Dominick is OCD.  Well, not seriously.  I don't think, although, maybe? ha.  He has taken to a whole new form of...I don't know what, independence maybe?  Every single little task that needs to be done in this house has to first be attempted by Dominick.  If I try to, how dare I, close the refrigerator door, he will be throwing a tantrum behind me "DOMINICK DO IT!"  It was cute at first, now it's just out of control.  It's literally everything and totally exhausting.  Aside from that, his new thing is .... I can't even explain it.  If we are walking to the bathroom or from the bathroom, or anywhere he will have to go back to the furthest wall and "start" there.  Even if that's not where we started from.  It's kinda nutty, and again...exhausting!  I now am a step ahead of him and just automatically go back to the furthest wall before taking his hand to do anything.  This probably is just feeding into the nutso behavior, but it saves me a lot of tantrum throwing time. 

Look what happened, I was supposed to be talking about Eddie, and I totally went off babbling.  Eddie is doing great, I am so grateful for his health, oh and for his AWESOME sleep habits. Yay for sleeping thru the night since he was 2 months old!  Well, I've used up all my Mommy time, nap time is over for big boy, and just about to start for the itty bitty.

Thanks for stopping by!!
<3

The "r" Word

So much goes on in a day in my life, that to blog about it all would bore you to tears. Right now I just want to focus on something I can't seem to shake. The "r" word. Retard. Retarded. I've used this word so many times and never once thought a thing of it. Now, everything is different and I am having an internal conflict. I have slipped and used it even just today. As soon as it comes out of my mouth my heart sinks. The word has a whole new meaning now and part of me doesn't even want to accept it. I can't even decide if I'm actually offended by the word, or not. I've never said or meant it in an offensive way to someone with an actual disability and I've been wracking my brain trying to think of a similar word or phrase to compare it to. Maybe that's because I've never known anyone it actually applied to, in the literal sense. It's just something I say, without thought and without cruel intentions. I know that a lot of people, parents, in my shoes are so offended by it that they are outraged. Maybe they've just been at it longer than me? Maybe I just can't bring myself to admit that this could be true of my precious angel. Yeah, that's definitely it, or at least a huge part of it. More than huge. Denial. Denial. Denial. Does anyone mind if I live here, just a little longer? Thoughts? Opinions? Advice? Just a quick snippet of what goes on in my mind. I have the hubby home on a rare Wednesday night, so I'm gonna go back to hubby time.

2 Months and More Pictures!



Eddie @ 2 Months with Brobee for comparison

Let's reiterate: Baby Eddie is 2 months old!  I hardly believe it!  It feels like a lifetime and a nano-second all wrapped into one.  Now that he is smiling my heart is completely full of joy.  We had Eddie's 2 month well baby checkup yesterday.  He is doing great! Gaining weight and growing wonderfully!  Here are his "stats": 10lb 7oz & 22 3/4in.  I am trying hard not to compare him to his big brother, who at that age was 12+lbs and 24 in, but he's the only other baby I knew so intimately! Hey, I know, every baby is unique and they all grow at their own pace, still can't help but whip out Dominick's chart to compare.  One thing that I know is the same with my two boys: they are STRONG!  Eddie's Dr was very happy with his muscle tone.  He was showing tons of resistence, holding his head up, positioning his arms to lift his head from the belly and pushing back with his little leg muscles.  The Dr. made me feel very optimistic, saying that his tone is great and that he is going to be a strong boy.  He was talking about him someday playing sports, as if he had a choice there, Daddy has it all planned out already!  He said it is now our job to keep him strong and active (when he is mobile anyway) - to which Daddy replied "that's big brother's job" I look into the future with my boys now and see so many possibilities.  Nothing will ever hold either of my little guys back. 

Speaking of big brothers, I am thinking I may need to figure out how to make separate tabs, one for each of my boys because since Eddie was born I feel like Dominick is getting lost in the shuffle.  Well, not around here, but in my blog posts.  Around here he is VERY much the (shared) center of our universe.  He is talking up a storm, talking so much that he'd rather lay in his crib and talk to himself than nap.  I think he is just too smart for his own good.  My hunch is that he doesn't know how to turn his brain off long enough to rest it.  Looks like it'll be permanent early bedtime around here for him.  Hey, I am NOT complaining.  By 7pm I am ex*haust*ed and gladly welcome some peace and quiet *and a minute to pee would be nice too*... of course, flash forward to about an hour later and there I am on the couch, ipad in hand watching the videos I took that day because I miss the little booger.  Pathetic.

Nighttime around here is a little too easy actually, with the exception of juggling a newborn while trying to bath a 2 year old - that I still have yet to master - but actual bedtime routines are going well.  Baby Eddie is on a nightly Tubby*Massage*Swaddle routine, throw in a few bounces and pats on the butt, he's down for the count!  I've even transitioned him to his own crib.  WHAT?  I didn't do this with Dominick until he was 5 months old, but, hey if it works, work it!  He will stay asleep for a good 4-7 hours before he is looking for a midnight snack.  This gives Mommy time to - ugh - CLEAN THE KITCHEN!? Even with the much welcome time to myself at night, I still cannot relax with a dirty kitchen, not to mention living/playroom.  It seems by the time I sit down it's more like dropping like a load of bricks.  And I wouldn't change it for anything. 

Ok, that's my update for today!  But because I just love to take photos, I will leave you with a photo montage of a week in my life.  Enjoy :)

Happy Birthday Mama!

Sweet Dreams. Precious Angel

Pants. Off.  Dance.  Off.

Marker Time!

Sneaking A Seat In Big Brother's Chair!

Let's Go Giants! Letting A Very Overtired Boy Stay Up Late To Pound On Tables And Yell GIANTS At The Top Of His Lungs.  So Worth It!

Must Capture Every Sweet Moment Possible, They Go By Way Too Fast!

Sweetest Face

2 Months!

Today Baby Eddie is 2 months old.  Of course, being so busy all the time, I forgot to take his monthly picture.  I wonder where the days go, they just fly by.  Eddie is doing great!  He started smiling, the most beautiful smile I've ever seen.  I am not sure if that is the reason, but I have been feeling so upbeat and happy lately.  I am in a very positive state of mind.  Seeing this several times a day does not hurt:

 I look at that face and all my fears are just melted away.  I can handle anything that comes our way, as long as I have these eyes, that smile, those cheeks to look at every day.  I was taking full advantage of Dominick's nap time yesterday, spending valuable one on one time with Eddie.  I will do anything, say anything and make the most ridiculous sounds to coax that smile that I love so much out of him.  Sitting on the recliner I swear he and I had a conversation without words.  I would coo at him and make a silly face and he would look at me, almost into my heart and smile back at me. He was starting to move his mouth and make little cooing noises right back at me that just filled my heart with utter joy.  My fears had started to subside before this, but this conversation between my Eddie and me have absolutely absolved them completely.  He was looking at me and telling me how amazing and special he is.  Nothing else matters.  He is perfect, absolutely, the way he is.  He was brought to me, to us for a reason.  I know now more than ever that I will do ANYTHING for this little angel. I cannot wait to start therapies with him, to watch him grow and learn and flourish and to step up to the plate and challenge him in any way I can.  He is going to be brilliant!  He is going to be amazing, he already is.  I look to the future with hope and excitement now.  I cannot wait for the rest of our lives. 

Transition

Today was Day One of the rest of my life.  Reality has hit me hard.  Daddy went back to work last night, leaving us to fend for ourselves today while Daddy sleeps.  Done this a million times with Dominick, not a problem. . .today? Problem.  I feel like today lasted a hundred years.  A hundred AWFUL years.  I've been crying all day.  I am completely,  physically and emotionally exhausted.  I could sit here and give you the ins and outs of the day, but I'm sure you could imagine.  A teething 2 year old and a newborn.  Add to that our first trip out of the house, just the 3 of us = hysterical 4 week old and a temper tantrum in the pediatricians parking lot.  It was ugly and embarrassing.  But hey, it happens.  I know I am not the only new mother to 2 to have gone through something similar, I get that.  Today tho, today was not just that.  For some reason today, on top of all the typical, to be expected stress I have also been overwhelmed with grief.  Grief in so many forms I can't even process it.  I find myself returning to the Down Syndrome birth board for comfort then breaking down crying with the weight of it all.  I am stuck in this in between world.  I have yet to uncover my new reality.  I cannot help but fear the future.  As hard as I try to stay positive, I just can't let go of the pain in my heart.  I have had so many kind and amazing words from family, friends and even strangers to help me see that everything will be ok. I know it will.  My head does, my heart is still in denial. I love my little angel with all my heart.  Sometimes tho, like today,  I think back to just a few short weeks ago and I wish I could go back there, where things seemed so manageable and hopeful.  I would lay on the couch rubbing my baby belly and envision our whole lives.  Who did I think I was?  Now everything just feels so out of control and just flat out scary.  All these fears and feelings of grief have made today so much worse than it needed to be.  I try to imagine what today would have been like if we never got that diagnosis a few weeks ago.  Would it have been any less crazy, scary and frustrating.  The answer is yes, I would have been the old me, the one with all the patience in the world.  The old me that hasn't had to live with these scary emotions for the past month.  I would have been more than up for the challenge.  The new me, not so much.  Will I ever be that person again?  I feel terrible for even feeling that way.  I know, or I hope that someday soon I will look back on today (and probably tomorrow and the day after) and say "what was my problem"??  I long for that day, the day of acceptance and peace.  Until then I only find it in bits and pieces.  I am scared.  My heart hurts.  I never was very good at accepting change or letting go.  I wish I could just let it all go, accept one day at a time and find the patience I so desperately need right now, but today is not that day.  I suppose I need to give myself time to let things become normal, but the more I try to tell myself that, the more my heart hurts with the loss of what that normal was supposed to be.  I am grieving all over again.  Maybe this will happen in many stages.  Maybe every time something comes up that I had so foolishly thought I had mapped out I will feel like this.  I hope not.  I hope eventually these feelings of grief and mourning will pass.  Is it possible to have some sort of combination of the life I dreamed of and the one I am living?  I don't want this to sound like I love my son any less because I could not possibly love him more.  He is the sweetest little being you'll ever meet.  Just writing that made me feel better.  My homework assignment for tomorrow: Every time I feel a twinge of sadness I will look into my sweet baby's eyes or watch him sleep peacefully and let his light shine on me.  He deserves a Mommy who can be in the here and now, not in the could and would have been. 

My eyes hurt,  my head hurts, my heart hurts.  I will go rest them all now so I can be the Mommy I need to be tomorrow.  Wish me luck.

Quick Update

As much as I'd like to update my blog more often, time is not on my side.  I did want to post a quick update on Baby Eddie's cardiologist appointment tho.  We were, of course, very nervous and worried about this particular appointment.  I still feel pretty uninformed about everything regarding Down Syndrome.  I find myself looking at informational websites and zoning out.  It feels like my brain is unwilling to process most of the info.  As part of the Down Syndrome birth board on my baby site I do see a lot of heart issues, some of them requiring open heart surgery.  This was my biggest fear.  I am not going to pretend to know any of the medical details, I was only hoping that my itty bitty did not need any kind of major surgery.  That being said, here is what happened at our appointment. 

Our heart doctor is located at Phoenix Children's Hospital.  When we arrived I was amazed at how beautiful the hospital was.  There must have been 100 Christmas trees on each floor.  It was colorful and gorgeous.  The worst part, naturally, was seeing way too many sick babies and children.  No amount of Christmas trees and colorful couches can make that sight any easier to see.  Ok, back to Baby Eddie.  He got an EKG and an Echocardiogram.  He was a perfect angel for both tests, even fell asleep during the echo as I rubbed his head.  After the tests we waited for what seemed like hours to meet our doctor and get the test results.  When he did finally come in he took out his little heart model and proceeded to go over all the heart issues associated with DS.  I was trying to absorb the info he was giving us but was just so anxious to hear our results I couldn't.  Finally he tells us that Baby Eddie does have a hole in his heart.  (excuse me for lack of medical terms ~ I'm still learning here, barely) He showed us on his model heart where the hole was and says something to the effect that it's in a good spot.  It's not something that needs immediate attention and he even says there are likely people walking around with such a condition and living perfectly normal lives.  OK, I can now breathe.  Basically, the hole is not small, but not huge and all we need to do right now is keep an eye on it.  We go back in 4 months for another Echo.  It's possible that it could close on it's own, but not likely.  The doctor says if it doesn't close on it's own, he will have to have it closed surgically probably by the time he is 2. Scary, but he says the procedure to close his particular hole does not require open heart surgery.  Instead they would go in with a catheter thru a vein in his leg.  A much less invasive procedure. 

Obviously, this news is great.  I feel like every day gets easier for me.  So far all of his symptoms seems mild and manageable.  Our next big hurdle is finding out how much he will be affected mentally and starting physical therapy asap.  We are hoping he puts on some more ozs by next week when we take him in for a weighing. 

As far as his hearing, it seems like he is really reacting to sound much more than he was initially.  I wonder if there really was just fluid build up.  Hopefully the ENT can get a good reading in March when we go back.    Until then I am content knowing he can hear, even if it's just partially.  Side note, the night before last he was having a hard time breathing overnight and yesterday morning.  We were out food shopping, Dada and Dominick in the store, me and Eddie in the car.  He was so uncomfortable not being able to breathe so I took him out of his car seat and noticed a boogie.  I somehow managed to get a fingertip up his nose to pull out that stinker, well, it kept on coming.  I must have tickled his sinuses cuz as I was pulling it out he sneezed.  Well, let me tell you what came out of my baby's nose looked like something out of a sci-fi movie.  It was a huge, hard ---something.  It was black/green and the size of a peanut.  No wonder he couldn't breathe!!  As soon as that sucker was out he was breathing fine and fell asleep almost immediately.  But, what the heck was that thing!??!  Maybe it was something to do with the fluid in his ear?

Anyway, that's my "quick" update.  Dominick has 4 teeth coming in at once.  The sharp ones too (incisors?) so he is in a lovely mood today.  He is currently running around, jumping on the couch and whining the whole time.  Ah.  Help!!!!