Special Olympics Debut!

L had his special olympics debut today by way of bowling! 

I was very moved by the special olympics community and look forward to spending more time with the organization.

He was quite resistant at first but by the end he had quite the strut to his step as he approached Lane 43! 

He scored a 73 in game one and a 67 in game two!

I could not be more proud of my sweet little man!

whoosh

L. Has had a tough adjustment to school this year despite his amazing team.

So the good report from the cardiologist last week was a relief to say the least! Everything looked 'perfect'.  She asked us to come back in 5 years just to double check, but that is standard procedure.

As usual, the folks in the pediatric departments at UVA were azing.

L scored this cutie for his bravery.   He named him 'ROCKY'

genetics update

We had a genetics appointment yesterday.  We haven't been since last March, so we just wanted to check in, but also wanted to check on Dr. T's concern regarding some Marfan Syndrome characteristics he noticed in L's 7 year appointment.

Dr. W determined that L does NOT have Marfan Syndrome, however, he did say that he has marfanoid habitus, which essentially is a very fancy term for "tall and lanky."

Dr. W said he had some 'homework' to do.  He wants to check to see if there is documentation of other people with similar deletions to L's who also have marfanoid habitus.  If so, then these characteristics will be determined to be linked to L's deletion.  If not, then Dr. W would like for L to have another blood draw to take a much closer look at his genetic make-up.  Since his original diagnosis, there have been developments and now the testing can give much more detailed information about specific regions.  There are pros and cons (as with anything).  With more information, especially with genetics, there come just as many questions.  It seems as if Dr. W was trying to prep us for what could be both an enlightening and frustration experience with this possible blood test.  Honestly, L's deletion is such a mystery that I would welcome ANY information, even if we don't know what it means!

Still a waiting game.  I have a feeling that will be the story of his life, but what fun he makes it along the ride!

license plate

Shaun's a genius, I tell ya!  He said, "Since Landon's initials are 'LAC' (get it, like 'lack') the license plate should read 'LAC -4p'"  Being the math teacher, I said, if it says 'LAC -4P' it's a double negative, which is really a positive.  He simply responded with "precisely!"  Love him!  So, here it is...or will be...

Thank you for all of the feedback and suggestions!

license plate

i have ALWAYS had vanity plates on my car until a year or so ago when i became too cheap to keep up with it.

i've got the itch again and this time around i want to honor my boy.

although landon is FAR MORE than the chromosomes he does possess and certainly isn't defined by the one he doesn't, but i want to honor his awesomeness despite his deletion and bring awareness to his deletion.  i want the opportunity to explain his condition when someone sees my license plate and asks me what it means.

SO............

i need your help.

what are your ideas for a license plate that incorporates landon's deletion (-4p), but might have a clever twist. 

don't forget VA license plates allow 7 characters on the plates.

thanks in advance for your thoughts.  you can post your suggestions by leaving a comment on this blog.