We have another wraparound meeting this morning.  Lizze doesn't feel up to going so I'll be flying solo on this one again.  I just not into these meetings anymore.  Truthfully, I don't think they can help us and I feel like this is beginning to be a waste of precious energy.  It's not that the wraparound team is doing something wrong.  In fact, it's quite  the opposite.  They're awesome.  The problem is that we are dealing with a situation so complex and so convoluted that I don't think they are a able to help us with what we need.  Residential treatment is no longer a priority because we know that it's never going to happen. Besides, Gavin's health problems are way, way, way more important and a much bigger priority. …

I wish I had the energy to write everything that I need to say but I just don't.  This week has been a rough one.  The amount of disheartening events that have taken place range from devastating diagnoses to commentors that have gotten the better of me.  The news about Gavin and revisiting Ataxia-telangiectasia is crushing for me.  Knowing that it seems more and more likely that this may be the case just breaks my heart.  Will knowing for sure change the outcome? No it won't. Will knowing for sure change how we do things? That's a good question.  This isn't easy to think about, let alone talk about.  However, I feel that it's an very important part of our story and I want to share my feelings, thoughts and…

I have about 5 minutes to do a down and dirty update. Right now I'm exhausted, frustrated and confused.  I think I'm just done for today. :-( We met with the endocrinologist this afternoon.  What we didn't know was that this was a very special endocrinologist, that is very similar to a GYN. I still don't fully understand the difference right now because they both seem to be filling a very similar role.  It's official...  Lizze is in menopause. Although at her, extremely young age, it's known as premature ovarian failure. We learned today that they are the same thing. For those wondering, this is not a good thing.  Not a good thing at all.  Lizze had 14 vials of blood drawn for a ridiculous amount of tests.  She has…

We've finally arrived after a bizarre commute to Cleveland.  I'll explain more about that later.  Lizze is really, really nervous but is hanging in there.  I'm praying that this helps her.  I would do anything to help her feel better. 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 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…