I found a website called the AT Children's Project and it presented me with tons of information about Ataxia-telangiectasia.  I thought I would share this and help you to better understand what this disease is. As I read through this site today, I felt my heart sink because Gavin's experienced many of those symptoms.  The main one missing is the actual telangiectasias.  However, apparently they can appear much later in life.  I'm worried and I think I will call his immunologist and share this site. I also need to find out about the genetic tests needed or the possibility of traveling to Johns Hopkins, if the team feels it's warranted. I feel sick now. The following information is quoted from the AT Children's Project website.  All credit goes to them.…

When I mention about being concerned about Gavin, this is one of those moments.  Yesterday, while at his IVIG infusion, things got a bit dicey and I was growing worried.  You can see the look on his face.  He looks like death warmed over and was disoriented and confused at this point.  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.

Before we get into this guest post, I want to set the stage. This post was written by Lynn Vigo, MSW, LICSW and originally published on the Seattle Children's Hospital website. ALL credit goes to her for this amazing piece. You can find the original article by clicking on the title below. One of the biggest problems facing families of kids on the Autism is family, friends, co-workers, employers and just about everyone one else not understanding exactly what it is that we face, each and every day.  Lynn explains what life is often like in a way that is so honest and impactful, it simply must be shared. I was so impressed and moved by this article, that I wanted to post this here because I think that my…

Today might not go bad we had originally planned.  We're supposed to be at the Cleveland Clinic today but unfortunately, Gavin didn't go to school because of the reaction he's having to yesterday's IVIG infusion. Gavin's currently at home with us.  He's got a headache and is sleepy.  These are both common side effects of IVIG, albeit new for him. Getting Lizze to this appointment is vital in our quest to get her better.  The plan right now is to let Gavin rest and if he feels better, he'll go to my parents house.  My Mom with get Elliott from school and we will simply take Emmett with us to Cleveland.  It's not ideal, by a long shot.  However, in order to ensure everyone's best interest, we much be flexible…

Thursday afternoon, we will be making our way to the Cleveland Clinic, once again.  This is a very, very important appointment. At least I think it is. We will meet with her new endocrinologist and hopefully begin the process of safely addressing what she has going on.  Bye the way, at the time I spoke about this last, I couldn't remember what they were calling this whole thing with her.  Turns out it's called premature ovarian failure. Basically, it's when her ovaries begin to fail.  They will stop working, as though she's in menopause but can start right back up again and work just fine.   The reason this is a big deal is because when they stop working, as they have currently and for who knows how long now,…

Tuesday's teacher note reflects that Gavin had a pretty good day.  He apparently didn't fall asleep during class today and that's a great accomplishment for him.  Behaviorally there was nothing noted and that's a largely positive thing as well.  :-) Good job Gavin.  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.

I mentioned earlier that I met with Gavin's immunologic,  Dr. Wasserbauer (Akron Children's Hospital) while at Gavin's IVIG infusion. As the title states, this was a good news/bad news/scary news type conversation.  Two and a half years ago, when Gavin's immunological problems came to light, the very first concern was that Gavin had something called Ataxia-telangiectasia. This explained the immunological and neurological dysfunction.  It's the only thing that has ever tied just about everything together, in a nice, neat, scarier than all hell little bow. At the time, initial tests indicated that thankfully, we weren't dealing with that terminal condition.  However, over the last two and a half years, Gavin's condition, whatever it is, has continued to progress.  His immune system is more and more compromised, with additional immunoglobulins being…

Welcome once again to the #Autism Blogroll for 2013 I've brought back my #Autism Blogroll for 2013 and we are starting fresh. If you added your link in the past, you should do so again. Every year I have to purge the database because there are simply too many links. So it's time to add your link back. Read below for more information.  Remember, this is open to any person, organization or business that has anything to do with #Autism, Special Needs Parenting in general or someone just wanting to help me spread Autism Awareness and my family's story.. If you are a resource or company that provides products that benefit the special needs community, you're encouraged to add your link as well. I like helping people, especially those touched…