I feel pretty accomplished today.  Of course, I probably could have done more today but I'm proud of myself nonetheless. After getting Elliott off to school this morning, I spent a lot of time on the phone for tons of Gavin related things.  There were some very important things clarified today that will change the course of our current journey.  I was even able to give Lizze a nap for a little while, not nearly long enough but it was the best I could do today.  After getting Elliott from school, he and I went to the grocery store to get a few items before returning home and doing some dishes and making dinner.  After dinner, I wanted to walk but that just wasn't going to work out tonight.  Instead,…

A day can make so much difference.  I received a call from Gavin's immunologist, Dr.  Wasserbauer.  She was returning my call from yesterday.  She likes to personally return phone calls to parents, which is awesome in my book. She wanted to make sure that I understood what was going on and let me know about the alpha-fetoprotein test, I was inquiring about.  The AFP test was the first thing she had done back in 2011 (I think she said 2011). She knew that was the first step to take.  His levels came back normal and that's why insurance wouldn't pay for the genetic testing.  Hearing this, things began to make more sense.  You may remember from my previous ramblings yesterday,  the John's Hopkins said that a negative AFP test pretty…

This morning was a particularly rough one for Elliott.  He didn't want to go to school and so he was resistant to everything. Not fun and as I have said a million times, I hate starting the day out like this. I know he will recover and have a good day at school.  It just sucks because I hate parting ways with him so upset.  :-( 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…

In the Lost and Tired household, there are a few ongoing jokes.  By jokes I mean so thing that happens on an ongoing basis and we see it, we immediately know who was involved.  This picture below captures one of those moments.  Emmett went all day without wearing his clothes.  He got dressed to go to Dr. Patti's but the moment he arrived home, it's like he literally she'd his clothes. :-) This time I happen to find them in the bathroom, but we can find them in random places around the house.  I realize that this isn't necessarily a good thing but when I stumble across this evidence that Emmett had been there, it always makes me smile.  It's almost like he's marking his territory.  :-) This site is…

I pretty proud because while I didn't feel like going but I pushed myself and managed to get in 3.55 miles in just under an hour.  That's slow for some but pretty good for me.  I met up with my Dad and did about 1.5 miles with him.  :-) Something I really have to focus on is the fact that I don't make time for myself to do things like this.  My goal is to pick up a used treadmill this summer but until then, I'm just going to have to make the time to get out and keep this up.  I really need to lose at least 40 lbs this year and I just need to prioritize this.  This site is managed via WordPress for Android, courtesy of the…

I spoke with someone from the A-T Clinic as John's Hopkins in Maryland this afternoon.  I learned even more information than I had before.  Her gut says that based on what I was explaining to her, she would guess that it was not ataxia-telangiectasia.  Basically the reasoning for that is because typically, the symptoms begin at a much earlier age. Having said that, it could also be that Gavin is just so complex that there are overlapping and unrelated symptoms going on.  This sorta mucks up the water and makes things more difficult to sort out.  However, we do know the next step and that's finding out if Gavin has had a AFP (alpha-fetoprotein) test and if so, what his levels were. I have a call into the Cleveland Clinic…