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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Special Needs Parenting: The delicate balance

I've been doing the whole special needs parenting thing for the better part of a decade now.  People always ask me what is the most difficult part.  They are always surprised by my answer. To me,   the most difficult part of special needs parenting isn't the kids,  it's everything else.  If all I had to do was physically care first my kids,  I could do that.  However,  everything else in life gets in the way and makes it even more challenging.  The biggest issue revolves around money. I have to be able to pay the bills.  If not,  we'd lose our home,  our car and that wouldn't be good for anyone.  If all I had to do was worry about bringing in an income,  I could do that.  The problem…

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Migraines: A last ditch effort for relief

Lizze was at the neurologist today for her migraines.  She almost always has a migraine.  They don't respond to medications and she is miserable all the time. It has gotten to the point where the only left that they can do is Botox injections.  Apparently,  people have found relief from chronic migraines with Botox.  Lizze isn't excited about the idea but I think at this point,  she dislikes the pain more than the needles involved. This does come with risks.  One of the side effects is migraines, which seems counterintuitive.  The other is an extreme migraine when the Botox wears off. They are putting a plan together and will likely follow up with the actual procedure at some point in the near future. Have any of you ever had this…

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Every day is a trial of patience

My kids are really,  really trying my patience.  Emmett was in a mood already this morning,  however,  upon Elliott arriving home this afternoon the screaming began. Lizze had two appointments that basically lasted all afternoon. I had all three boys for most of the day and have become a Daddy on the edge. Emmett either doesn't or can't listen,  I'm not sure which.  Elliott really struggles with Emmett and the combination of the two is quite volatile. Gavin on the other hand,  has been very well behaved and actually quite helpful. I can't wait for the day to be over,  the kids to be in bed and all the work I need to get done tonight is finished. I'm trying to make arrangements for this week with Emmett because we…

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