Our sweet and crazy little busy family!

Our sweet and crazy little busy family!
we look normal enough right?

Friday, March 4, 2011

And the saga continues...

Jordan started staring...Im not talking your typical, oh that was nice, daze off stare, it was a LONG stare, and his little body would limp. While this was happening his eye would deviate out to the right.  I thought, well thats odd!  Then we noticed a massive nose bleed.  These are so normal now, that we plug the nose, wipe the blood, and go on about our day.  We went to the pediatrician, whom we now know was absolutely CRAZY! She said we would need to coterize (burn) his nose to stop the nose bleeds.  Um no, thats not happenin!  Needless to say we switched peds, and im not sure if that has done any good or not.  Anyway, we got him in to see a neurologist at one of the best hospitals around.  This was to check about the staring sessions, which i now know are seizures.  EEK!  We went, they did an EEG, it all came back inconclusive.  The next step we thought would be a video EEG, which would require a hospital stay.  Not so fast, that's not at all what happened.  We met with the neurologist to discuss the lack of results on the EEG, and as we were telling him about the things that were going on with jordan(headaches had been added to the list) he just stopped and said, well we are going to need to have an MRI.  Wait...WHAT? For seizures? This couldnt be happening, or so i thought.  Boy did it ever.  If you are a mommy, then you know what i mean when i use the term momtuition.  I immediately experienced this, as i had sooo many times before.  I knew the moment he said those words that we were looking for a tumor.
      At the beginning of the summer, we scheduled his very first MRI.  We were so very scared, but i have to say, there have been a certain few family members, and two very loving friends that have stuck by us through the whole ordeal so far, and i have no doubt in my mind that they will be there until the end and then some.  He had to be sedated for the MRI, so even though i hated that, it had to be done.  MRI number one...smooth sailing, or so i thought.  He is allergic to the Fentanyl.  WHOA NELLY!  He was trying to tear that poor little nurse apart! 
        Results came in, and i cant really put into words the was i felt when the neuro muttered those horrible words.  "Your son has a brain tumor"  ...... I immediately felt crushed.  I really dont think i heard anything else that he said the rest of the appointment. 
      The results of it was that he believed that there was a lipoma tumor on jordan's brain stem.  A lipoma tumor is basically a fatty tumor.  Basically what it is, well , its a big crock of crap!  I dont believe it for one moment, because that doesnt explain to me where all of these symptoms are coming from because a lipoma tumor doesnt cause any symptoms at all!
          You guessed it, we got a second opinion. We went to a local doc.  Holy crud moly! That was NOT a good decision, cause it left us more confused about the situation than when we went in.  He took a look at the mri and said nope, absolutely not, i will not agree that that is a lipoma tumor, and went on explaining why.  We were told to have an mri with contrast, then bring it back to him.  We did just that, another sedated mri, another terror fit, resulting in another ridiculous answer.   The second time we went to him, he looked at the new mri, and said" well, it is a lipoma, and it has shrank, and has moved from the brainstem to the outside of the brain.....again WAIT.....WHAT?  I believe in miracles, and i believe god does amazing things, but i couldnt go on with an ounce of doubt in my body.  SO we are now working on neuro number three. We are currently at the most prestigious children's hospital around, and this place seems promising!  We will see with time, but the current news, is that we go monday for an mri.  He has to have general anesthesia, so thats pretty scary.  Next is a hospital stay EEG.  This happens the 29th of march.  That should be interesting. 
      In the midst of all of this tumor chaos, our pediatrician decides that he needs to be tested for autism........

Friday, February 11, 2011

What is Typical?

Someone told me something the other day and it really struck me!  She said what and who really is typical?  If you really think about it, everyone has their "quirks"..Everyone has those little things that sets them apart from the rest of the world.  Some people just have more pronounced "quirks".  My son is one of those people.  So what do you do when your perfect world isnt so perfect? You can decide to wallow in it, accept it, and just go about your day to day, or you can do as i am doing , and fight it with every being in your body.  
 Jordan(bear) was born on a beautiful and sunny day in august.  Though the day was complete chaos, he couldnt have been more perfect.  He was so beautiful!  The calmest baby i have probably ever seen!  I was on cloud nine.  He developed typically for the whole first year of his life...except one thing.  He didnt talk....the only two words he said were ba and ga.  We didnt really think much of it, it was our first child.  Honestly, we were just so thrilled that we kept him alive for an entire year, that we just thought it was normal!  Ha Ha!!  The pediatrician had other plans.  She signed him up for a speech evaluation.  At the time, we were so scared!  We had no idea what that meant for his future. Looking back now, we know that it was one of the biggest blessings that we could ever receive.  
  From the time he was a year old, everyone who came into contact with jordan told us that something wasnt right.  He wasnt doing the things that he was "supposed" to.  I would love to know who came up with the paper that says they HAVE to do things by a certain age....did they have PERFECT kids?   Anyway, We were told NUMEROUS times that he was autistic.  One woman even went so far as to say that he would never be able to speak to us, that he would have to use a computer to communicate with us.  Boy was she wrong.  
  Our speech therapist is truly sent from heaven!  She has brought him SOOOO far.  He now speaks in full sentences and sometimes talks a little too much!  lol  Last January, she was getting ready to release him from his therapies, and then we started to notice that something wasnt right.....To Be Continued......
So here's the situation.  This blog was originally made as a place to release some thoughts.  I havent dont that just yet, because i was afraid it would upset some people, or maybe some people wouldnt care what i have to say.  Well, i have to have somewhere to send my frustration, and so i am going to send it in my blog posts!  In the end, maybe it will help someone find their way with their child. I have learned so very much in the past 4 years with jordan, that surely someone would love the info.  Get ready, cause its on full force.  If anyone's ever wondered what is going on with him, you will find out in the next post.

Thursday, February 10, 2011

So, if you know jordan, you know that he is in LOVE with monster jam!  Everyday this is all he does!  We took him saturday to see the trucks in charleston, wv, and i thought i would share! And for your enjoyment, a little video :)  I bet he said WOW 1000 times!  We are so thankful that we were able to take him.  I remember his last birthday party.  Turning the big number 4!!  It was a very bittersweet day.  At that point, we had no idea wether he would be okay.  We didnt know what kind of tumor it was and were so scared.  To have him still and be able to enjoy him we feel truly blessed.  Guess it was another one of those moments :)

Thursday, January 27, 2011

A little about us!

Meet Mia!  She is the baby of the family.  She just had her first birthday in november, and let me tell ya, she is my baby!  The youngest of three, she has really figured out how to get her fair share of whatever is going on!  lol Gramma calls her butterfly cause she is just so sweet!  Dont let the nickname fool ya!  I picked this picture for a reason, she is really rotten inside!  She tends to hold her breath and pass out when she's mad or hurt!  
Meet Alivia!  She is 3.  She has been a big girl since she was born, and my ballerina princess.  She loves makeup, dancing, singing, and "playing with her barbies" as she tells grampa every single day!  Cute right? yep she totally is, but let me tell ya something.  She is a FIRECRACKER!!  She knows what she wants and when she wants it, and i hope one day that will give her an advantage. Until then, mommy's nerves would be a lot better if she'd tone it down!  ha ha ! She is a loving sister to her baby sister, but has a special bond with the little guy im about to show ya.  She is the mother hen over him, and im pretty sure she knows whats going on with him. She is always gonna be my right hand!  Love her!
This, my friends, is Jordan, my bear!  This boy, oh this boy.  I would go to the ends of the earth for him!  (and at times it feels like we've been close) He is what some people called Atypical. But to all of us, he is just bear, and we wouldnt have him any other way!  He loves monster trucks, wait i dont think you got that.....HE LOVE LOVE LOVES Monster trucks!  He can tell you anything you want to know about almost anything!  He is so very smart!  We have been fighting for him since the day he was born, and will always continue to fight until we know he's okay.  Not gonna go into too much detail right here, but i will just say, there is more to come!  

As far as Jeremy and I, well we are quite the pair!  We met in highschool, when i needed a date for the prom!  lol  We have been in love since then.  He is the most amazing husband and daddy!  Wow! What a daddy he is!  I dont even think i can put it into words!  He makes me grounded when things get crazy! Love him and i dont know what i'd do without him!  I am a stay at home mommy, and very proud to be that!  I will be honest, there are some days that it would totally be easier to have a 9-5!  It is very important to jeremy and I that we instill our values into our kids and when we were growing up, our mothers stayed home with us.  We wouldnt change that for the world!  I have some of the most amazing parents on the planet.  I have sooo many wonderful memories of my childhood.  My mother is def. my best friend!  We love to have fun with our babies, and this mama loves to cook!

What's for dinner you ask?

So i'll admit it, i am having a lazy day!  I woke up this morning so very pleased that i own a crock pot!  You guessed it!  Its a crock pot kinda meal!  I went to the fridge to see what i could stuff inside, and found some boneless pork ribs.  After an hour of deliberation and a few phone calls, i decided they weren't any good, so lo and behold i had to get creative!  For my mothers awesome and memory filled christmas party, she made some pulled pork barbeque sammies with dr. pepper and it was so yummy!  SO i had some frozen pork chops, unthawed them, seared them, and threw them in.  Caramelized some onions, salt pepper, onion powder, and you guessed it, my beloved dr. pepper!  Gonna throw them in some bbq sauce when they're done and bake them a little!  With it, we are having smashed tatoes, mac and cheese, and a veggie which has yet to be determined.  Try it out if ur brave!

Here We Go!!

So, this is it!  I have so much to share with you all that i decided to make a blog.  I dont always time to make videos and such, so i thought this would be a great way to keep you all informed on how the kids are doing, funny things they do, and jordan's appointments.  Hope you all enjoy and if there's anything you wanna know just comment and i'll be sure to answer!