Dysautonomia: Arrival at the Cleveland Clinic 05/17/2012

We have arrived at the Cleveland Clinic,  exactly on time. Traffic was horrible and Gavin is already out of it.  We are all checked in and waiting to go back. **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play Store

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Dysautonomia: Our quest begins with the first step

We are on our way to hopefully find answers.  It's about an hour and twenty minute drive,  not including traffic. I have a feeling that this is going to be a really long day. I want to thank our parents for taking Elliott and Emmett last night.  This allowed Elliott to get to school and Emmett to just be able to relax. Thank you all for the help.  :-) Please say a prayer for us today.  Perhaps just keep us in your thoughts.  We actually have quite a bit riding on this today and the physical trip itself is taking quite a bit of sacrifice to actually make.  I'll leave it at that. I truly hope that we find the answers we need to help Gavin. **Thanks for reading**  …

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Dysautonomia: 8 years in the making

Tomorrow is a big day for the Lost and Tired family.  We will make our trip to the Cleveland Clinic in search of answers to Gavin's continuous decline in health. For those of you new to this blog and our story,  I give you some brief back story. Gavin is an extremely rare child. Not only is he an awesome kid but he has a huge list of very serious health issues. So far this is what we know for sure,  both serious and less serious: 1) Aspergers 2) ADHD 3) Primary Immunodeficiency 4) PICA 5) Asthma 6) Degenerative Neurological Disease (yet undefined) 7) Dysautonomia (autonomic disorder) 8) Epilepsy 9) Schizoaffective Disorder Gavin has lost all his lower reflexes and muscle tone and some control over his tongue.  It's affecting…

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Dysautonomia, Epilepsy and Today’s Followup: 05/16/2012

So we made it home today from Gavin's appointment.  It actually went really well. Nothing has changed but I think that we're even more sure that he is definitely dealing with with some form of Dysautonomia. We had to take Emmett with us as well. He did really well while we were there because he just loves Dr.  Brown. However,  all the way up and all the way back,  he screamed at the top of his lungs.  It was so piercing that I had to put my window down to keep my ears from popping. Then of course,  he had to go potty 2 or 3 times. It's safe to say that Emmett is struggling a bit right now. Gavin did start to get sick after he got out of…

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Dysautonomia: Following up from the hospital stay

Gavin in will be returning to see the neurologist in the morning.  This is an epilepsy and Dysautonomia follow up. While he hasn't been officially diagnosed with Dysautonomia,  we expect that to be soon.  When he was admitted 2 weeks ago, that's what they treated him for. Tomorrow is a follow up from the EEG and the hospital stay.  Hopefully,  it will be uneventful and quick and painless. I'm anxious to get to Cleveland on Thursday and to get this diagnosis under way.  When we know for sure what we are dealing with,  than we will be better prepared and perhaps have a treatment as well.  **Thanks for reading**        -Lost and Tired Please join our Autism Help Forum Look for "Autism Help" app at the Google Play…

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Screw you Apple (UPDATED)

I'm so pissed off right now. I have dozens of reasons for disliking Apple and all they stand for but this latest issue has affected me directly. We switched back to Sprint in order to save money over Verizon. We were able to trade our phones in and get phones at Sprint for free. I am, or was, going to be trading mine in on Friday for the new HTC EVO 4G LTE. It's the same price as my Galaxy Nexus and so it's a straight up swap. However, the problem is that Friday is the very last day I can do that. Now it seems that the EVO will no longer be hitting the shelves this Friday, due to friggin Apple. This was something I had really been looking…

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My accomplishments of the day: 05/15/2012

While today started out really crappy,  it ended up pretty well. I actually got quite a bit accomplished. I took Elliott to school,  got caught up on some emails,  wrote two articles,  made a few important phone calls,  hit the post office,  cleaned the fish tank,  picked up Elliott from school, picked up groceries,  stopped at the pharmacy, cut the grass,  cleaned up after the dogs,  filled the tires on the van, played baseball with the boys,  made dinner and submitted two articles to two different newspapers. Considering all my distractions,  I think I did pretty well today.  I feel really good about everything I managed to get done. I can't say this happens very often but I'll take what I can get. :-) The rest of the week is…

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Today’s Victory: 05/15/2012

The boys were all driving me crazy and I mean banging my head into a wall crazy. In a last ditch effort to broker a peace deal,  I took them outside,  which is something we don't always like to do in our neighborhood. We got the tee ball set out of the garage and set it up. Elliott and Emmett took turns hitting while Gavin played outfielder.  Gavin didn't get to hit because he would have likely broken something as he's really aggressive and this was meant for Emmett. My kids completely surprised me.  They all got along and Emmett and Elliott actually took turns hitting,  all by themselves. It was really,  really nice and I'm so proud of my 3 boys. This is one huge friggin victory for the…

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