My Heart is Tugging

Monday...January 23rd, 2012

I had just dropped Aiden off at school at 10:10, he had speech therapy that morning.  At 10:40..Robbie brought me my phone and said someone had called it.  I checked and it was Park Elementary ( Aiden's School ).  I didn't listen to the message, I just called them back.  Already having a feeling of what happened.  I spoke to the nurse and as she is telling me what happened, my worst fears are coming to light.  She told me that Aiden's Aide ( Sue ) had been trying to get Aiden's attention and she couldn't.  He kept staring off...wayyy different than his usual.  She proceeded to wave her hands around in front of his face saying his name over and over.  She then picked up his chair with him in it and turned it to face her, trying to get him to focus on her.  Sue yelled for the Teacher to tell her what time it was, she wanted to time this.  All of a sudden Aiden's eyes got BIG and he looked right at Sue and she asked him "are you ok Buddy?"  He lunged at her and started crying really hard..burying his  face in her arm.  Sue and his teacher both thought he looked really pale, so Sue took him down to the office and they gave him some crackers and juice.  Everything seemed to be fine, so they started to walk back to the classroom, when Aiden looked at Sue and said " Mrs. Smith, my hand won't stop shaking ".  She tried to hold it to get it to stop, but it wouldn't.  They then went back to the office...Sue was worried something else would happen and she didn't want to be alone in the hallway if it did.  It stopped and that's when they called me.  It's crazy how fast things can change.  I told the nurse at the school that I was gonna call his primary doctor and I would call them back.  Aiden was back in class at this point, but I was FREAKING!!!  I called the doctors and tried my damnedest NOT to cry while on the phone.  She told me to call his Neurologist because it sounded neurological.  This isn't happening.....long story a little short..Doctor was not in and nurses weren't either.  I looked at Robbie and said "let's go pick up Aiden".  We kept thinking....seizure, but maybe his sugar was low.  We don't know..we are not Doctors.  Five hours later, I get a call back from the neurologist office telling us to UP his Trileptal to 5ml in a.m and 5ml in p.m.  Ok............soooooo is the neurologist thinking this has to do with his Epilepsy?..does he think he had a seizure? are you sure it wasn't his sugar?  Come ON!!!!  That is all she was gonna tell me.."up his Trileptal"  SERIOUSLY!!!!  She had to put me on hold and go ask the Doctor all the questions...SERIOUSLY!!!  He said yes, it was his epilepsy and IF it was his sugar there would have been more symptoms with it.  The hand shaking has to do with the seizure.  Soooo....he had a seizure at school.  It lasted about a minute..minute in half.  My baby LOST time and that is probably why he started crying.  I could only imagine how scared he was when he came to.  Does the Doctor want to see us you ask...nope, not till our appt. March 14th.  Nice isn't it.  We are thinking....he has been on 4ml in morning and night since August 1st, 2011.  He most likely went through a growth spurt and the 4ml wasn't cutting it.  At least it wasn't like the other two.  This little boy sure is working my heart.  Our hearts...

 

2011

So this year has brought Us tears, laughter, family, new friends, old friends, LOTS of Dr.'s and more tears. Can I say this has been one of the most challenging years of my life? Yes, Yes I could.  I know we are given what we can handle, but sometimes I feel we are tested beyond what we think we could possibly ever think we could do.  And this year my friends...WE were tested and ya know what....WE did it, or at least I think we have.

  I have made friends and became close to them so fast that I would begin to think...we were meant to meet. There has been a friend that has been there for me more times than I can say these past couple of years and she took the time on her lunch break to come to the hospital when Aiden had his first seizure and she stayed for almost 3 hours.  She will never truly know just how much that meant to me.

 
  Other friends and family called and wished us well and they are just as important to me as everyone else.  Please don't think I will ever forget you guys and the love you shared and continue to share.  We also had a great friend who, when she found out, she met us at the hospital with food, drinks, and other stuff we would need. I love you Bunches!

 
I honestly don't know if we could have gotten through this without ALL of you.  For this we are Thankful each and every day that we have such Amazing people in our lives. To Richard and Ina....I was given such AWESOME in-laws.  You are like another set of parents to me and our boys.  I love you so  much.

  The one thing that I wish I had here...is my sisters ( Kristin and Erin ).  You know how I feel, so I won't share it on here for everyone to read.  We are connected and close more than people would know...this I am grateful for.

So here is to 2012...whatever it may bring us, I know we will get through it.  Whatever it may bring you..just know that you will get through it too.
    Much love and Hugs <3 and a Happy Happy New Year!!!

From This Moment On.....

    How to start this blog.....Hmmmmm
As I am sitting here at the library waiting for the time to pass until it is time to pick up my kids, it gives me LOTS of time to think. You know it is gonna be 17 years this December that Me and Robbie have been together. That's more than most people stay married, sad but true. I am not bragging in a any sense, but shouldn't I be allowed that? I think so....The fact that I found My one true Love, Best friend and someone who loves me for me and would NEVER want to change anything about me. He knows what to say without even talking, he knows that just a simple touch of his hand can say a thousand words. We have our ups and downs, but that is part of life. The way you handle these ups and downs is the key. We have never called each other bad things or talked down to each other either...I know he can drive me BONKERS just as much as I can drive him BONKERS, but I feel everything in this life is a learning experience. We have grown with each other and have NEVER felt that we are loosing ourselves in that process.
    I knew from the first day that I went to his house that I wanted to be with him...share my inner most moments with. I knew I wanted him to be the one that I laughed and cried with...how did I know this at 16?...he made it that easy. He had a sweetness that most 16 year olds didn't.
    Fast forward to June 1998, when I found out I was pregnant...I don't know if I could have been happier...March 6th, 1999 our baby boy was born and here ya go....I was even happier. He was simple Beauty. Being able to create a little person with the man you love the most....to me is the greatest gift.
    May 26th, 2001.....the Day we got married, I can't tell you how many times I cried out of pure happiness, anyone who was their could tell you though. I think I may have been radiating in happiness.
    January 2002 was very very hard. My Aunt who raised me from the time I was 8 passed away. When i came home from the hospital I was a Zombie...that day passed with a blur. Robbie was there of course to comfort me and little Noah, they are all that I wanted. That March we found out I was pregnant again.
December 13th, 2002 our second little man was born. My two boys:)
    Now I know kids are not for everybody and I respect that, but.........Man are you missing out. These little beings are Mini " YOU'S ". Like my quote in my bathroom....."Children are a story yet to be told". My boys are my GREATEST creation and accomplishment. In no way am I a perfect parent, but I am gonna try my Damnedest. These little faces look to you for everything and sometimes we just don't have the answers, but you know what I will search until I find one.
    I know a lot of my blogs have been about Aiden's stuff going on, but that is a VERY big thing right now in our lives. My three boys are my life.  If I didn't have the love at home from my Husband I am sure it would have been wayyyyy more difficult to deal with. I also have Amazing Family and Friends <3.
    So when life throws you hard balls, you need to just hit them out of the field. By me saying this I don't want you to think everything is hunky dorey.....all of this with Aiden has been very heart wrenching, I feel like I could cry at any moment sometimes for the smallest of things. I get told a lot how strong I am, but sometimes I don't feel strong and I don't want to feel strong, I just want a good cry damn it! Even though with all this that is going on I have had some AWESOME  belly laughs...anyone that knows me...knows I LOVE to laugh.
    Back to the point of this blog.....My love for Robbie: these are my descriptions
  
    1. Best Friend
    2. Daddy
    3. Husband
    4. Brother
    5. Lover
    6. Hilarious...at least to me
    7. Honest
    8. Giver
    9. Sweet
   10. Quiet
   11. Very Very Friendly
   12. Noble
   13. Generous
   14. Would give the shirt off his back
    This blog is not meant to brag about what I have, but more for the deep..deep love and appreciation I have for my husband.
     If you have not found your ONE....My wish for you is...that you will...everyone deserves this kind of love.
    From This Moment On...I Will Love You <3

Our World Just keeps Spinning

     If only I could see the future just a little.....July 28th, 2011.  Noah came into our bedroom kinda in a panic at 8:30am saying " Mommy, wake up you need to come out here ".  Did I know what was happening?  In the back of my head...YES.  This would be the second time my body needed to catch up with my brain REALLY fast.  As I turned the corner by our basement door, the first thing I see is Aiden on the floor, Instantly I know what is happening...my worst fear AGAIN.  I yell for Robbie and tell Noah " he is having a seizure, call 911 ".  Noah hands me the phone as Robbie is coming out of our room, knowing Exactly what is happening before he even sees it.  You know, even though this has happened once before I am sitting here typing this "Crying".  I don't think until now I have really cryed, I have been going full speed ahead.  I needed to write this when nobody is around and all I have is silence behind me, and that is what I have right now.  I don't think I can ever get used to seeing what we see when he has a seizure.  Back to that morning.....I tell the paramedic on the phone what is going on and that we do have Diastat (  that is something we would inject rectally ) to make the seizure stop.  We did not use it due to being scared....till this day I wish we would have. IF it were to ever happen again..we would use it, especially now because we know the longer he has the seizure the more likely it could cause Brain damage.  So do we feel like shit for not doing it..YES we do, but luckily he does not have damage.  Thank GOD!!

     After I got off the phone with them I have Noah call their Grammy and tell her what is happening, Ina gets to our house before the ambulance and calls Richard.  When the Paramedics get to our house they look at Aiden and tell us they are going to work on him in the ambulance.  One of them pick Aiden up and carry him out.  That leaves us pacing the house not knowing what to do.  I start to get things together for the hospital.  I realize i can't just sit here and pace I need to do something...Oh maybe brush my teeth and hair.  I felt stupid when Robbie walked into the bathroom and here is Me straightening my bangs with tears in my eyes and I say " I had to do something, I can't just stand here ".  He touched the small of my back and said " I know, I understand ". Of course that brought tears to my eyes then and now.  It's those simple touches that mean he knows exactly what I am thinking.

     I called my sister Kristin to let her know what is happening, as I am explaining, a Paramedic Finally comes in to let us know we are about to leave.  I hung up with her and headed out.  I wish I could say that they got the seizure to stop, but they didn't.  It took 4 doses of Versaid and something nasal to get it to at least not be so violent, that was when we just pulled up to St. Lukes that it calmed a bit.  What is Crazy is that we were in the same room with the same nurses as the first time.  Robbie, Noah, Grammy and Papa all show up at the same time.  Aiden kept moaning and groaning, but was not talking.  as Richard was leaving I look over at Aiden as he starts to throw up in his oxygen mask.  The nurse suctioned it out as I wiped his mouth.  Still he kept moaning....so the nurse came in and said " he must be in pain, I am gonna give him some Morphine ".  should I have questioned her..YES, but you know what I don't know what he is feeling.  The Morphine probably knocked him out for about 10 minutes and that is it.  The Ambulance from St. V's showed up shortly after.  St. Lukes had given Aiden some scrub pants because same as last time he had peed and we are not about to try and change him while he is having a seizure.  As they are switching him to their bed he starts to kinda get scared.  With all that medicine in him, how can you blame him.  I got to ride in the back with him this time.  Half way their he felt like he had to poopy, he didn't, but he did pee.  The Paramedic..Scott was his name, was sooo nice.  Even  though they didn't have any scrub pants that would fit Aiden in the ambulance, he explained to Aiden that he will make sure to keep him covered.  Scott gave Aiden a stuffed bear with a flying suit on for being so good and brave.  We named to bear Scott :)  When we got to St. V's, they took us straight to the I.C.U.  I let them know as soon as we got their that he needed some scrub pants....it took them 2 hours to get them :( I am figuring the reason for that is......Aiden turned into The HULK....Morphine is NOT his friend.  Anyone that has had the pleasure..knows Aiden Loves to give Check-ups.  He was NOT having it this day.  He  stood STRAIGHT up on that bed..penis and butt out for everyone to see, all because the nurse wanted to listen to his heart.  The nurse looked at me, saw me trying to reason with him and said " is this normal for him? " Uhhhh NO!

      Erin, I hope you know just how sorry I am that you had to find out what happened thru facebook.  NEVER did I want that to happen... this I will ALWAYS be sorry for.  Julie, Thank you so so much for dropping everything and coming to be their with us...Ina thank you for calling her:) As the day went on Aiden of course got better as the Morphine wore off...the Nurse fell in love with him  <3 .  Doctors came in and did not understand why he was on Trileptal.  We had been weening him off since July 6th, 2011, due to 3 EEG's coming back normal.  July 27th was the first day on the dose 1ml in the Am and 1ml in the Pm.  Him having a seizure was his body SCREAMING....NO not ready to be off Trileptal.  The Doctors say " Oh..they usually give a person one free seizure before meds ".  Ummmm have you looked at his chart, his first seizure lasted 25 minutes!!!  The one Doctor said " well I'm not a neurologist "   Ya think!!!!  Then they wondered why Trileptal and proceeded to explain about the 3 new meds.  ALL 3 cause behavior problems.  HELLO!! he has Sensory, that alone causes behavior problems.  Later Robbie asked our neurologist's nurse and she called to ask about the Trileptal and guess what he said....I chose Trileptal because all the other ones cause behavior problems....Thank you Dr. Haseeb for actually listening to parents :)

     We did stay the night at the hospital..they wanted to keep an eye on him once his medicine was bumped back up to were it should be.  Believe it or not, he likes to stay :)  Friday morning, Dr. Haseeb came in to see him.  Asked me about the Diastat and explained a bit more, now I am not so scared to use it.  He then looks at me and says " Aiden has Epilepsy ".  Did I want to cry...yes I did, but at least we have some answers.  He will be on Trileptal for at least the next two years.  That is good with us...we really don't enjoy seeing that.  It breaks your heart to not be able to do anything for your baby.  When it was time to go home, the nurse had to take out Aiden's I.V. and unwrap a bunch of tape off his hairy little arm.  This took Me, the nurse and Robbie to hold him.  She was AWESOME, she used this wet swab to wipe on his arm, so it didn't rip out any hair.  As I am talking to him I notice he is getting pretty pale.  When she was done he said " I feel like I am gonna throw up " Guess what...he did.  He got himself so worked up, the nurse stayed until his lips started to get pink again.  Poor Buddy.  After we left, we took the boys to Red Robin, poor Aiden looked so drained.  When we got home me and Aiden went and took a much needed nap :)

     We Truly could not make it thru all this if it wasn't for ALL of our family and friends.  When I got on facebook and saw all the love and prayers that everyone was sending us...it brought tears to my eyes.  Thank you all so much from the bottom of our hearts.  Also, knowing that Noah has seen this both times and seeing how he has handled it, makes me love him even more and that Aiden could not have a better brother.  I know still to this day he feels guilt for not waking up sooner.  Aiden had kicked him a couple times before waking him up.  All 3 of us have some guilt...we should have known that maybe something could have happened with him being so low on his meds, but how would we possibly know that.  I hope the guilt goes from Noah's heart, I don't want that weighing on him.  He is such an emotional being and that I love the most.  Thank you for being you Noah,  I love you!  Aiden, Thank you for Always bringing a smile to our faces...I love you!  Robbie, you know me inside and out, I couldn't ask for a better husband...I love you more than you will ever know <3

at least for ME it's gonna be scary

Good NEWS!!! About 2 1/2 weeks ago Aiden had a sleep deprivation EEG, this meant that we had to wake him up at 2 am and keep him awake for the rest of the night. THAT was fun. I actually woke him up at 2:40 am..kinda hard, but I did it. I then proceeded to tickle him and make him laugh, do you know how hard it is as a parent to try to act as if YOU are NOT tired??? Ha!!! I was tired, but had to be a trooper for Aiden, he is what matters. After an hour of tickling him and making him laugh I looked at Robbie and said " Your turn " God love him, he took right over, BUT his way was letting Aiden crawl up in the chair with him to "snuggle ". I then decided I am gonna hang some pictures at 4 am. I had  to keep telling Robbie to wake Aiden up and he tells me " Oh he is just kidding, he is awake " as I look at Aiden's eyes closed. Then at 5 am we woke up Noah, we took showers and headed off to Cafe Maries, we got there 3 minutes after they opened at 6:30am. This will keep us busy till 8am. We needed to be at St. V's by 8:30am...there he could fall asleep if he wanted to. He fell asleep 2 minutes before we got there ( snoring and all ). Poor little duder:( It took about 1 hour for his EEG to be done, the nurse said he Zonked right out. She looked at us and said " You have a VERY well behaved little boy, what a sweety". That makes you feel good as a parent:) We finally got the results from that EEG this week and they came back normal ( no signs of a seizure ). THIS means we start to ween him off his Trileptal. He will be totally weened off it by Aug. 9th 2011. 

     Even though there showed no signs of a seizure and trust me, this makes me VERY happy. It scares the beejesus out of me to take him off the one thing that is making him NOT have a seizure. I think every night at least for awhile I am not gonna be able to sleep, being scared that he might have a seizure. So that is why I say " at least for me it will be scary ".  We still do not know what caused it and may never know. The thing is.......there are only 4 people who were in that room that night that saw just how bad it was...and I NEVER want to see that again, who would?  When something bad happens to your children...it 100% RIPS your heart out. These beautiful creatures, YOU have created and carried and LOVE, they become your WHOLE world, the reason you LIVE and want to be a better person for. THEY are what matters in life.  So we Thank everyone who has prayed for him for us <3

Finally Some Answers

April 29th 2011 I came home to a message on my house phone. It was the nurse from the neurologist's office telling me that she has some news from the blood work they did on Aiden 4 1/2 weeks ago. Man did my heart jump into my throat. I felt myself get shaky instantly. What did they find out? Were they even gonna tell me over the phone? Oh GOD was it Duchenne or something worse? All this goes through my head within seconds as Noah senses my nerves on edge. He then tries to calm me with his sweet words. Could I love him more?  Yes...because my kids surprise me more and more every day. They are still learning who they are and THAT I love the most. Sorry I got off topic. I find my purse to get the number so I can call them back. Of course I now have to leave a message....It only took them 10 minutes to call me back, but that is a long time to wait when I am shaky and pacing the kitchen. The first thing she says to me is " Nicole, he does NOT have Duchennes " I instantly started to cry as she goes on to say " But he does have Becker Muscular Dystrophy, you can breathe now ". She tells me this is the BEST news that she could have told me. I apologize for crying and she says " that is ok, but now you have me crying ". Never has a nurse cried because of me, but you know what...she must obviously be a Mama too, she new what we were going through and maybe she knows because it comes with the job, but either way THAT even brought tears to my eyes on just how sweet she was. I don't think I could have heard this news a better way.

    She went on to tell me that now we need to get in touch with the Muscular Dystrophy Association to get him registered and then make our first appt. He will now have two neurologists..the one we have now for his seizures and this new one just for his MD.

    The more and more me and Robbie talk about this makes us feel that.....yes we do wish that Aiden didn't have this, but you know what? We FINALLY have answers and THAT gives us peace of mind. Of course we would never wish this on any parent..heck we didn't wish it on us, but it is here and all we can do is work with it. I may sound calm, but inside I feel like my heart is being ripped into a million pieces...Aiden is our baby as is Noah. I truly feel things happen for a reason..weather I like the reason doesn't matter, but by Aiden having that seizure...THAT is the reason we found all this out...I don't like that it happened, but it did and now we know why.

     We truly..truly can't Thank ALL of you enough for the Thoughts and Prayers and LOVE being sent our way. We honestly feel that they helped. Please keep them coming..this is something that he will have for the rest of his life. Next is learning about it and possibly needing to get Noah tested...that will be another Scary part in our lives again, but we made it through this Thanks to All of you and we will keep on making it through. Much..much..much Love from us to YOU!!

Some Of My Favorite Things...

So I decided to write a blog that hopefully won't make anybody sad this time. I thought " Hmmm, maybe some people may want to know what I like, "what makes Me tick".  So here it goes. I absolutely LOVE Tree Hut Shea Body Butter. It comes in a four pack at Meijer for like $5.00. I have eczema and this makes my legs Ohhh so soft.

My next favorite thing is Coconut Oil...this my sister Kristin turned me onto. I use it to take off my make-up   ( hence, no chemicals, all natural ) and I also rub some between my fingers and run it through my hair before I blow dry it..it makes my hair not so frizzy. I just found out that Kroger sells it for only $6.95, where at Bassets it is $9.95. I was so excited to see it at Krogers.

  Lately I have had a few random people tell me just how good I smell..if you read my Facebook status last week you would have read just how close someone at Krogers got to me to smell me..that was a First. So if you don't want to be as Crazy as That woman I will just tell you what perfume I wear.  It is Lucky Number 6.  I love the bottle, I love the smell..It is my FAV.  Now I am pretty sure you can find it at many stores like Kohls, Elder Beerman, JcPenny, maybe even Meijer for about $35.00 for a bottle way bigger than the one in the picture.

  Now as most of you should know is that my sister Erin is the Owner of Bellababy Studio and she makes these Beautiful flowers and bows.  If you see me on a regular basis you know you will see me sporting something in my hair made by her.  What can I say...She is Awesome at what she does.  You can find her on Facebook and Etsy, so get to it buy something :)

  Now if I am not wearing something made by my sister, than most likely you will see me in some sort of hat.  The grey one on the right I have stolen from my Brother- In- Law Chuckster..Shhhh he thinks he will be getting it back, but between you and me " He's not". I find these hats everywhere..Target, Meijer, Chuckster, Kohl's..they usually range from $6-12.00.  Hey if you can ROCK a hat...ROCK It!!

   I have a slight obsession with long socks, as I call " My Crazy Socks" I LOVE them and I don't care if they match what I am wearing..even though sometimes I try to match a little. Robbie and our boys always try to find new ones for me...leg warmers are cool too.  I have one pair that I put on one night and started jumping on the bed in front of Robbie and started singing " I'm a Maniac..Maniac... On The Floor". If you don't know what  that song is from..I am sorry to say "YOU were deprived as a child".

  My family and I are Major movie watchers.. I love movies that make me laugh, cry and think. These are some of my Favorites. You don't live under a Rock, so I don't need to tell you where you can find movies :).

  Just like my flowers, bows and hats..if you know me and see me on a regular basis you will also know I love me some scarves. Three of them I got from my sister Erin..the maroon, tan and aqua one, she actually made. My friend Ayda made me the long teal one for my Birthday.  The light blue and teal ones on the end came from Thailand..I mean actually traveled from Thailand to Maui to Ohio..those two are from my Aunt Pammy and they smell so good.

  I love All sorts of music as you can tell from my CD's.  Trust me there is so many more I would love to own..this collection isn't even close to All of the variety that I like.

  Oh my Gosh..I almost forgot! The one thing that makes my mouth water  as I am trying not to drool...And that is Dark Chocolate..ohh how could I almost forget you, you little devil.  What makes it soooooo easy to love is..It's Good for you!!!!

   I have been collecting penguins for some years now...how could you not love them, they are soo stinkin cute.  This set of penguins I got from my friend Chris a couple of years ago.   I am also starting to love owls. I think that they are so peaceful and mean no harm..very tranquil.

  There are 3 things that aren't actually Things that are my utmost FAVORITE in this whole world.......That my Friends are my Boys....THEY are My WORLD...THEY make me who I am...THEY Love ME no matter what.  Hug the ones that are in your life and Don't sweat the small stuff. I hope this blog brought a Smile to your face, because THAT was my ultimate goal.... Love you all!!   Peace Out!!