How we salvaged Christmas Eve

Christmas Eve in the Lost and Tired house had turned into a stress filled,  migraine inducing nightmare. We ended up staying at home because of the days events.  I decided that we need to save as much of the Christmas Eve experience as possible and not let it be ruined by frustration over behavioral issues.  How did I accomplish that? We ordered pizza for dinner,  watched cartoons and straightened up the house so Santana Clause could safely navigate the house tonight. That was actually Gavin's idea.  The house is in good shape already but I will always take the help in keeping it it that way.  The goal is to get the kids in bed shortly and make sure Santa has plenty of uninterrupted time to finish his job tonight.…

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Guilted and Manipulated

After Gavin had regained his composure from his first meltdown of the day,  I wiped the slate clean and  started the day over. We had decided that we would try to split up this afternoon and one of us stay behind with Gavin. However, things have since changed. Gavin took it upon himself to guilt Elliott into not wanting to go visit his grandparents. Elliott came downstairs and said the he no longer wanted to go because Gavin couldn't go.  If Gavin was allowed to go then he would change his mind. As he is saying this, Gavin is peaking his head around the corner sporting a huge grin.  I hadn't said anything Elliott about Gavin not going today and Lizze has been in bed with a migraine for hours…

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The Christmas Eve Meltdown

It was barely 10am this morning and Gavin had his first big meltdown of the day. He has become very unstable and much like a ticking time bomb,  he's ready to explode at any second. Lizze and I had decided to visit with her parents this afternoon and mine in the morning.  However,  in light of just how unstable Gavin has become,  I don't know what we are going to do now. We may just split up and allow Elliott and Emmett to spend time with our family. They are handling the holiday quite well and would likely have fun with little ill effects. We had planned on staying home for the holidays, however,  it now longer seems worth it for everyone to stay together just to have a front…

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New year, new problems

2012 hasn't even arrived yet and we are facing new and frightening challenges. Gavin is continuing to decline and he is presenting with new symptoms. His current list of confirmed diagnoses are as follows: Aspergers, Schizoaffective Disorder, Psychosis,  PICA, ADHD, Primary Immunodeficiency, PTSD, Asthma, OCD, Reflux, IBS and an Unknown Exotic Degenerative Neurological Disease. This covers the major issues. Today we have possibly added to the list once again. It appears that Gavin may be having seizures. The seizures have not been witnessed but the post ictal phase has been. Shortly after the first of the year, he will be having a 24 hour eeg done, to better understand what is happening. We will also be meeting with the worlds top mitochondrial specialist, Dr. Cohen, who just happens to be…

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Waiting for lab results

We have been discharged.  Nothing showed up on the bloodwork and so there are no apparent life threatening conditions.  We need to follow up with neurology to have him evaluated again.  They want a full mitochondrial work up and then go from there.  We all need a 24 hour eeg after the holiday.  Thank you for all the support and prayers.  I really appreciate it.  :-)

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We have arrived at Akron Children’s Hospital 12/23/2011

We have arrived and been checked into Akron Children's Hospital.  Gavin is sitting in bed watching TV.  We have talked with the first doctor,  and I think we overwhelmed him.  The staff doctor came in and he is actually the one we saw the last time. The only thing they can do is eliminate any life threatening conditions.  They are not equipment to handle something like this in the ER.  That is completely understandable. We just want to rule out any immediate life threats.  We will likely be here the rest of the day.  All Gavin can talk about is food.  He missed lunch and doesn't know what to do with himself. Until he gets worked up,  they can't allow him to have anything. A Gavin that has missed a…

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Please pray for Gavin

Gavin is going to Akron Children's Hospital Emergency Room.  He has been disoriented today and something is wrong.  I'm concerned he maybe having seizures. His actions are consistent with some one post ictal,  the phase immediately following a seizure,  where is disorientation and even aggression.  As a paramedic,  I have seen this many,  many times.  They have looked into seizures with Gavin before but nothing showed up at that point.  However,  something is very clearly wrong and we need to make sure he is OK. Please keep him in you thoughts and prayers. I'll keep you all posted. Thank you. Posted from WordPress for Android

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I’m Grateful

I swear to God that Emmett was programed for destruction.  Don't get me wrong,  he's sweet,  adorable and amazing but he is also very destructive. It's like his goal for each day is to make as big of a mess as possible.  Let me just say,  he is quite efficient at doing this. The one thing he does that just drives me crazy is his pension for destroying Elliott's bedroom.  He will go into Elliott's room and pull all the clothes out of the dresser and completely strip the bed.  Then he flips the freaking mattress off the box spring. He does this every single day and I have no idea why.  All I know is that I am so very tired of having to put it back together at…

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