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…

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…

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…

As a special needs parent, I know all too well the challenges faced by many of us on a daily basis. As a parent to three boys with special needs, I constantly worry about their future. I know that many of you out there, feel the same way. There's a reason I call this blog Lost and Tired. So often, I find myself overwhelmed and without help or a direction to go in. At the same time, I'm exhausted from trying to find that direction and seeing to all my children's needs. With that said, my wife and I have been able to check one of our biggest, daily worries off our list. At one point in our lives, we were constantly worried about our kids education and not for the…

Yesterday was a particularly bad day for Lizze.  With the fluctuations in temperature and the rain, her fibromyalgia has been very difficult to manage. Most of the weekend required Lizze to use her cane to walk. Yesterday, when we were headed to the park, the boys helped Mommy walk out to the car. They were so gentle and patient, it was amazing to watch. As it turns out, Lizze and I have done something right because our kids are full of compassion. :-) 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. ;-)…