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…

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…

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…

Yesterday,  before everything was downhill, Emmett built this really cool castle out of blocks. He said something about it being Spiderman's house. Great job Emmett.  You're so creative. This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me. Please join our Autism Help Forums Look for "Autism Help" app at the Google Play Store

I learned something new yesterday. Rather, I gained a better understanding of what's going to be happening today at the Cleveland Clinic. Gavin is having 3 skin biopsies done this morning. The doctor called Monday afternoon, prior to our to our trip to Akron Children's Hospital and explained the entire procedure. The biopsies will be taken from his leg. He will receive 3 injections of lidocaine, to numb the general areas. Once that is done, they will take 3 skin samples. My understanding is that it's like a large hallow needle, that is used to puncture the skin and remove the sample. I'm pretty sure that this is notgoing to go over well with Gavin. I also learned more about what they are looking for. It's called small fiber neuropathy.…

Gavin was released and we came home. Gavin is as stable as possible.  This was confirmed to be an autonomic issue with no underlying infection etc. Cleveland wants us to make the trip in the morning and get what needs to be done,  done. I'm completely exhausted having dealt with Gavin's unpleasant attitude while we were are the hospital and the tantrums this morning.  We have a very, very long day tomorrow. Thanks again for all the thoughts and prayers.  This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me. Please join our Autism Help Forums Look for "Autism Help" app at the Google Play Store

There was just a shift change here at Akron Children's Hospital.  However,  someone must be looking out for us because the doctor that just came on did his residency at the Cleveland Clinic under Gavin's autonomic specialist.  This means that he is very familiar with Dr.  Moodley and has a very easy time contacting him.  This is an absolute godsend because he specializes in this and knows what Dr.  Moodley would want done.  This is a huge string of luck for both us and Gavin. They are going to be doing some extensive blood work to make sure there is not another cause to this current problem.  Once we have those results,  we will better know what to do. This was posted via WordPress for Android, courtesy of Samsung’s Galaxy…

We are at Akron Children's Hospital and they got Gavin back right away.  During the trip Gavin's heart rate went down. When checked during intake it was 102 bpm. When we got to his room and they hooked him up to the monitor,  his heart rate stayed lower.  The doctor came in and wanted to know what was going on.  The monitor was showing everything was okay. This is where we begin to feel stupid for making a big deal out of nothing. However,  upon examination,  the doctor asked Gavin to sit up so he could grab some lung sounds. The simple act of leaning forward,  caused Gavin's heart rate to jump into the 130's again.  The doctor layed him flat and it came back down.  This was basically a…