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…

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.  :-)

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…

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

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…

Thanks you everyone for your thoughts and prayers.  Lizze is peacefully sleeping right now,  at home,  in bed. The hospital treated her very well and gave her a cocktail of pain killers to break the migraine.  It's to soon to tell if this actually worked,  but we should know in the morning,  when the meds are out of her system. I just wanted to let all of you know how things were going.  My hands have been fully today and so I haven't had much time to write. I'm gonna try to get caught up tonight between loads of laundry. Thanks again and please have a good night. Posted from WordPress for Android

Please say a prayer for Lizze.  She went into the emergency room a little bit ago.  Her migraine is so bad that she has become unsteady on her feet and sick every time she eats.  It's also been 3 days since she has been able to sleep. I had to sorta strong arm her in order to get her to go.  She is very reluctant to go to the hospital because of the approach many doctors take to patients suffering with fibromyalgia. In our experience,  there are quite a few doctors that don't buy into this disorder and subsequently treat those seeking relief as drug seekers. While there are people out there looking for their next fix,  people with fibromyalgia, live every single day in almost constant pain. Wanting relief…

Last night at therapy,  Elliott but on his creative cap and drew a picture for Dr.  Pattie abdominal also made a giant snail out of clay. He wanted to share both of these things with all of you.  Enjoy :-)   Posted from WordPress for Android