Saturday, May 28, 2011

Our DITY beast

Well, we got the sides built for our trailer today. We'll be using it to move. Tomorrow we'll be painting it.

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Wednesday, May 11, 2011

Em's new glasses

Wednesday, May 4, 2011

For a good cause....

Wow. My 300th post. How insane! I cannot believe that I've had enough to say to fill 300 posts. I also cannot believe that 30 people care enough to follow this tiny little blog. Thanks you all. I know I dont personally know most of you, but it's nice to know that my life is interesting to people outside my real life.

So, the reason for this post. May is National Neurofibromatosis Awareness Month. As you know, Alvin was diagnosed with NF1 back in February. For those of you that might have stumbled into here and not know what NF is:

Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 2,500 to 3,000 births).  The neurofibromatoses affects more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

NF has three genetically distinct forms: NF-1, NF-2 and Schwannomatosis. They are caused by different genes and chromosomes. The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for any form of NF, although the genes for both NF-1 and NF-2 have been identified.

NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children.

Alvin has NF1. Here is a link detailing his form of NF in greater detail. (About NF1) Because of his condition, he has developmental delay, speech delay, growth delay, etc.  But his NF does NOT define him. He is a happy 3 year old boy who loves Thomas the Train, Bob the Builder and Disney's Cars.
How can you help? Get involved!

Tuesday, May 3, 2011

Storms a brewing.....

I'm sorry you guys. I realize that I havent updated in several weeks. We went home for a week following the last post. Then, a few days after coming back home to CT, we received the devastating news that Eric's rerate for the Navy wouldnt be going through. We've been in a state of shock ever since. Where will we live? Where will Eric work? How will we cover both Eric and Alvin's medical issues? The thing that's making it worse is, we've been told to expect this to go through very quickly. As in, we may only have 30 days to make arrangement to transition to civilian life. Because of this, Eric is taking TAP (Transition Assisstance Program) classes this week. Ya'll, we're scared. This is NOT something we wanted, but there's nothing we can do to stop it from happening. Luckily, Eric attended a job fair a few weeks ago (just in case) and has 'some' job leads. Nothing concrete though.

I promise I'll get back to posting somewhat normally sometime soon, but for now. I just cant.