Elliott called me hysterical

I just got a phone call from a very,  very homesick Elliott Richard. He will be arriving home,  sometime shortly after midnight. My mom said that all of a sudden he became really upset and she wanted him to talk to me so that he might feel better. Truthfully,  I couldn't understand a word he was saying but I knew he was very clearly distraught. I'm pretty sure he's physically exhausted and emotionally drained from the 13+ hours he's been in the car today so far.  They encountered very heavy traffic leaving New York this morning.  So much so that as of 4pm this afternoon,  they had only made it to New Jersey. All I can say is I'm really,  really excited to get Elliott back tonight.  I promised him…

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The Cleveland Clinic: Finally Home

We just arrived home and I'm taking a short break to touch base with all of you.  Don't you feel lucky.  :-P We received the results all the testing that has been done,  with the exception of today's biopsies.  Basically, everything has come back normal or within normal ranges. The chromosomal microaray came back negative on all 2000+ genetic disorders. This is great news and I should be happy, right?  Well,  yes and no. The truth is that while it's great that everything came back negative,  at the same time it's beyond frustrating. I say that because we still don't have any answers. The only things that was confirmed today is that Gavin has marked autonomic dysfunction. That translates to significant autonomic dysfunction.  The reason for all the tests was…

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Cleveland Clinic: Surviving the biopsy

Well,  Gavin survived the biopsies.  This is what actually happened.  First of all,  the doctor was absolutely fantastic and turned out to be the same guy that did his lumbar puncture last year. Basically,  the entire process took about 45 minutes. Gavin was in full dramatic form while we were there but did pretty well overall.  :-) They took a total of 3 biopsies all together.  Our extensive from his upper leg,  le from his thigh and one from his ankle.  Prior to doing anything,  Gavin received one shot of lidocaine in each of the three sites.  He freaked out over the lidocaine injections but most of it, as I said, most of it was drama. The way they take the biopsies is a bit under pleasant but at least…

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I’m a good parent because…..

The other day we did the I feel guilty because......post and people really poured their hearts out.  Today I wanted to change things up and help you realize all of the things that make you a great parent.  Sometimes it's nice to hear out loud or I writing what you do so well.  There's nothing wrong with bragging a little about what makes you a great parent.  :-) So without further ado..... I'm a good parent because..... I'll go first. I'm a good parent because I love my kids more than anything in the world.  I'm a good parent because I do my absolute best to help and provide for the every single need, even though I don't always succeed. I'm a good parent because gave up my career to…

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A dose of reality

In case you ever need perspective,  spend a day in the pediatric side of the Cleveland Clinic.  The amount of suffering I've witnessed in the many kids I've encountered today is so completely heartbreaking that I simply don't have the words. I've seen several kids that have undergone brain surgery and bare the obvious scaring. I'm horrified by the treatment some of these children are enduring at the hands of their parents. These parents aren't even trying to hide it. I know I'm not the only person noticing this because others look on in horror as well. Look,  trust me when I say that I know what it feels like to be overwhelmed lost and tired. The last thing I want to do is judge anyone because I don't know…

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Witnessing abuse

What is wrong with people?  We're sitting in the waiting room and there is a little boy, a bit younger than Emmett.  He is ovbiouly non-verbal and being treated absolutely horribly by his grandfather.  I have to say this and hate me if you must. I don't care about cultural differences,  there is a right way and a wrong way to treat a child,  let alone a child like that. Twice now, I have seen the grandfather pick this child up by his arm and once by his leg,  after the child fell off a table.  That's right, the grandfather was too busy playing with his phone to watch his grandson. The child wandered over to this table and climbed up before tumbling over.  The guy literally picked this poor…

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Cleveland Clinic: Waiting for the biopsy

We have arrived,  late,  thanks to unbelievably bad traffic. However,  since special arrangements had been made for today,  they said it was okay.  We did call ahead to let them know he was going to be late. We are getting checked in and Gavin's having his vitals taken. The next part is probably going to set the tone for the rest of our very long day.  The only thing getting me through this today is that I get to see my little man of the world, Elliott Richard tonight.  Words can't describe how excited I am.  I've only spoken with him once and we need got to Skype either.  :-) This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know…

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Cleveland Clinic: On the road again

We are about to leave the house and head to Cleveland for a very,  very long day. Gavin has an unpleasant procedure in about 2 hours.  We will then have about 4 hours to kill until the next appointment.  I haven't figured out how we are going to kill those hours just yet. If Gavin wasn't so medically wishy washy right now,  I would take him to the Cleveland Zoo. That would kill some time. Please keep Gavin in your thoughts today.  If you can squeeze in the rest of us, that would be awesome as well.  I'll try to keep you updated in realtime as much as possible.  :-) This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know…

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