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........

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