The Lost and Tired Message of the Day: Never Lose Perspective

I wanted to share with you an experience I had that helped me to keep things in perspective.  https://www.youtube.com/watch?v=00YambcI2a8 This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

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The return of the oral fixation

For some reason, Emmett’s gone backwards in time and once again seems to have developed an oral fixation. He was like this when he was younger and then it just sorta stopped. Over the past few months, Lizze and I have noticed this trend returning once again.  I'm not sure what to make of it but I don't miss having to remind him not to put things into his mouth. :-( With any luck, it's just a phase and will once again ride off into the sunset, never to be heard from again.  This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and…

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Hello My Name is Anxiety

This past week or so, Elliott has been more anxious than usual and that's impacting him on multiple levels.    For starters, I was approached be the principal at Elliott's school the other day because she's worried about Elliott.  We have a very close relationship with our kids school and so we talk all the time.  Apparently, Elliott’s been refusing to eat while at school and that's concerning to all involved. She wanted to let us know so that if there was anything they could do to help support Elliott, they wanted to help. I was of course concerned to hear that but at the same time, not surprised. Elliott really been struggling lately.  He's an emotional roller coaster and wound way too tight.  I know a good portion of this…

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OMG…. Make the fighting stop

Elliott and Emmett have been at each others throats all afternoon.  Lizze doesn't feel well and I think, just maybe...I might go crazy. At this point, I'd be happy if they worked together and destroyed their room again.  :-( This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.

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Welcome to an IVIG Infusion @AkronChildrens

Gavin finished up this month's IVIG infusion at Akron Children's Hospital.  I thought I would share today's journey in the form of a slideshow (with no audio). The process was begun at 9am and ended around 2pm. In total, it took about 5 hours to complete. Exhausting is the word that comes to mind. Anyway, Gavin did really well, both behaviorally and physically. There were a few times I was concerned that he was going to crash but he managed to avoid a trip to the ER. The scariest moment for me was after we had left the infusion lab and we're walking to the car. His heart rate dropped from the mid 130's to 54 bpm. I wasn't sure we were going to get to leave the hospital this…

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March IVIG Infusion @AkronChildrens Hospital: Status Update

We've been here for 3 and a half hours so far and still have about 2 hours left in the IVIG Infusion.  This procedure is painfully slow, in fact, time seems to stand still while I'm waiting for this to finish. I'm a bit concerned about Gavin because he seems to be a bit disoriented and clumsy. While eating only a few bite of his lunch, he dropped both utensils on the floor. I'm really hoping that I'm overreacting and that everything is okay. The moment of truth will be when he stands up in two hours and doesn’t crash. He's a bit upset with me because I made him shut off the PS3 and get some rest. Right now, I'm so friggin tired, I can barely keep my eyes…

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March IVIG Infusion @AkronChildrens

Gavin and I have arrived at Akron Children's Hospital for his missed IVIG infusion, as part of his ongoing treatment for common variable primary immunodeficiency.  Gavin was supposed to receive his infusion a week ago but as you probably recall, he crashed and was taken to the ER due to yet another autonomic crisis. Hopefully, today will go smoother than last week's attempt.  In the unfortunate event something does happen, he's in a really good place for that.  Akron Children's Hospital is absolutely fantastic and I have the utmost confidence in their ability to take care of my son. Please keep Gavin in your thoughts and prayers today.  I'll keep everyone posted on how things go. This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note…

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IVIG Infusion @AkronChildrens: Take Two

In the morning, I will be taking Gavin for his IVIG infusion that he missed last week when he went into another Autonomic Crisis.  My extreme hope is that Gavin will make it through this without any trouble.  He's been through too much already and I want this to go smoothly for him.  If we do experience any trouble, at least we'll be in a good place.  Please keep Gavin in your prayers today and he undergoes his antibody infusion. This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. ;-) Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. ;-) For more ways…

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