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…

I just had a 30 minute conversation with someone from the A-T Children's Project.  Aside from Gavin's immunologist, this is the first time I have been able to speak with someone about Ataxia-telangiectasia and have them understand and have detailed knowledge of this rare condition. To say that I'm grateful would be an understatement.  I also have a message into the Clinical Coordinator of the A-T Clinic at John's Hopkins.  These were definitely forward steps and I learned things I didn't already know.  For example, most kids with A-T are wheel chair bound or need assistance by Gavin's age. In Gavin's case, he's not that bad yet.  Having said that, we have seen a rapid progression in his neurological problems and it's affecting his ability to walk. He doesn't need…

Today is a really bad day for Lizze.  Emmett as usual, is full of energy and loud noises.  Having said that, he was very careful and very quite this morning when he was sitting with his Mommy and Greysha  (the Cat). 99% of the time, Emmett is literally bouncing off the walls and screaming his head off.  However, there are times when he does the most amazing things and can sit quietly with his ailing Mommy and snuggle.  As time goes on, he seems to be able to do this more often.  I know that Lizze really appreciates this and so do I.  :-) Emmett, I'm so proud of you.  This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any…

When you are a special needs parent, it's so important to make connections to others going through similar things.  When you're a parent to a child with extremely rare conditions, like Gavin, connections are absolutely invaluable. Right now we are trying to figure out the whole Ataxia-telangiectasia thing and aren't sure where to go or what to do. We don't want to overreact but it's really hard not to because this is such a game changer. On one hand, it makes sense and his specialist believes this to be the case.  On the other hand, this is so incredibly rare, what are the odds that Gavin has this? I'm so lost right now but thankfully, someone has reached out to me and offered help.  There is an organization called The…