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…

I wanted to say how proud I am of my wife Lizze.  Her blog My Life Beyond Labels is doing better and better. If you haven't checked it out before, nows a great time to go and read for yourself.  Lizze shares her story and does so in a very honest way. Lizze is 32 years old and deals with fibromyalgia, chronic migraines, bad knees and now menopause. She's also a sought after book reviewer as well.  Take a minute and visit My Life Beyond Labels and see for yourself what so many others are saying.  :-) 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…

Elliott did a really great job of getting ready this morning.  There was no whining and no raised voices.  Yes, we had to scramble to find his uniform and that was a bit stressful but it all worked out.  I always love when he goes off to school in a peaceful manner.  It's sets a positive tone for the day and I think he gets more out of school.  This morning before he left the van, I even got a hug and a kiss goodbye.  :-D Great job Elliott.  :-) 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…