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.

Marfan Syndrome

Not an official diagnosis, but our newest ponder after L's 7 year checkup is that he has many characteristics of folks with Marfan Syndrome.  I scored an appointment with genetics in July to hopefully get some questions answered.  At this point, little surprises me, but I still gets freaked out by the L's medical mysteries.  Only time will tell and no matter what, he's my bud!

Marfan Syndrome Information

an awesome bday!

Lando didn't make it to school all week and Friday he still had a fever on and off, so we felt obligated to reschedule his par-tay for a later date.

without even leaving the house, i think he had an amazing birthday despite a rough start (getting stung by a wasp).

he got to play video games outside in the tiki hut, rescued a snake, a frog, and a toad from the pool, broke in his new bounce house/slide, roasted hot dogs and marshmallows, and watched his new wrestling videos!

there is nothing like seeing the smile on that boy's face!

i hope that he finds joy all throughout his life and that it is filled with everlasting joy and comfort.

he has faced more in his 7 years than i feel like i have in my 31.  i never thought i would look up to someones so significantly younger than me!

happy birthday, angel.  you are amazing!

7 years old, huh?!

it's his big day!  our mr mr is 7 today!  i haven't been up past 11pm in weeks, but i made it to see 1:29am last night and was happy to wake up this morning and move around a lot better than 7 yrs ago!

i hope that my actions and words express to him on a daily basis how much he means to me and how much he has taught me, but those emotions are so deep that i can often not articulate them in such a way that describes their intensity.

Dear Landon,

You have certainly turned out to be everything for which I could not prepare.  You teach me everyday that life is precious and no matter how difficult it might be, we can make it through and most triumphantly by doing it together.  I love your Landonisms, your empathy, and your charm.  You have taught me that by slowing down we can observe things, master things, and appreciate things.  Your determination and will is impressive.  You have developed the most unique and precious personality and unfortunately, have inherited your mother's lack of motivation when it comes to cleaning up after yourself :-)  Words could never accurately express how very much you touch my heart, my love.  You mean the world to me my sweet boy!  Whatever comes our way, we conquer it together!

lost and low

I wish I had a very upbeat post, but the reality is, sometimes, I am just sad.  Not sad because of who L is, but sad because I feel like I want to 'fix' the situation.  and then i feel guilty because i know he's perfect just the way he is.  i guess i feel like i don't always know how to put into words how i feel even...fearful that i will sound ungrateful.  i guess i ultimately just want life to be fulfilling for L--always. 

it's been hard this spring hearing of everyone's kids (and i do mean EVERYONE) playing soccer and doing this and that.  i remember when landon was born i always wanted him to play soccer...somehow i always thought of that as a run sport.  it's hard to think that he might not every do it--and i guess, who cares, it's not like it really matters, but i guess it does or else i wouldn't think about it.

AGAIN--i don't want to sound ungrateful because i LOVE him.  i LOVE him for who he is and who he isn't.  he can certainly give you a run for your money on any video game, that's for sure!

i guess everything might all be hitting me because I feel bombarded with reminders of our circumstances lately.

We just recently committed to having him be a part of the elementary Functional Skills program at his elementary school.  I'm excited as I know it's what's best for him, but i also wish it could be different.  i wish he could 'hang' (so to speak) with his age-appropriate peers.  Academically, I know it's best and that is what matters.  He is a smart kiddo and this will only foster his growth.

We also just had track and field day at the school where I teach on Friday and everything from walking over to the high school where it is held (the noise and confusion and the noise and the lack of structure) to the activities just made me think of him.  I wondered all day what he would be doing if he were there.  Would he participate in any activities on his own?  Would he be willing to do something if someone encouraged him to do so.  Would he be so intimidated and overwhelmed that he would have a difficult time? 

His 7th (yes, 7th) bday is coming up and we're looking into adaptive tricycles.  a part of me wants nothing more than to get him one, but i really wish i could just go to Walmart and buy him a bike just like any other family.

okay--i'm rambling.  i could go on forever, but i feel like i'm talking in circles and making no sense.

for those of you who read this and don't know me, i certainly hope you don't think i'm the worst mom ever....just having one of those days, i guess.