Why I Couldn't Sleep Last Night...

I would have to say, 95% of the nights since I came home from the NICU, I don't sleep through the night (and when I do decide to get a good nights sleep one of my lil sis' step up and take the roll of keeping my parents sleep deprived).  My parents try to figure out why I don't sleep.... is it that I didn't do enough during the day, did I do too much, is it because I didn't take a nap, am I getting sick, is there a new "sound" that is bothering me, is it a seizure......

Well, I am going to let you all in on a lil secret, I typically do it just to keep things interesting.  That's right :)  But last night was different.  Last night I was sad.  Yesterday me and my fam said bye to someone who has been part of our family for the last two and a half years, my friend Hannah had to go back to med school and this time she doesn't have any more summers (or time for that matter) off until she becomes a doctor.  I am going to miss her (and so is the rest of my family).  I think she summed it up the best in a story she wrote for me a year ago:

One cold winter day,

a girl named Hanna met Conner Shay,

And her life was forever changed in the very best way.

Conner has a special gift you see,

but he let Hannah think they were just

doing his therapy.

Even though Conner couldn't use his voice like you or I,

he was teaching Hannah with a smile

and a twinkle in his eye.

While he showed off his jumping skills,

he taught Hannah to celebrate the small thrills.

When he got messy with food,

Hannah caught his infectious mood.

Conner convinced Hannah to throw water therapy

into the mix

to show her that there is nothing

a smile can't fix.

Conner's little sisters joined in on the fun,

and together they played Hannah

three against one.

They quickly became two peas in a pod,

And for Hannah, working with Conner was

much more than a job.

Because she knew she met Conner for a reason,

And her love for him will not change with the season.

   

   

   

" As the years go by Our friendship will never die! 

You're gonna see it's our destiny, 

You've got a friend in me! "

Don't forget us and always know you are always welcome at our house!  

Thanks for sticking with me all these years! 

You'll never truly know what you meant to me and my family!

Summer In A Nut Shell

Well, I have kinda been a slacker this summer in terms of my blog..... but in my defense, it has been BUSY!  Brace yourself, this is a quick zip through the last few months. 

        

This is Tara in the pic with me, one of my paraprofessionals at school, and she helped me with our end of the year concert.  She did a great job.  Now next year we have to get my music teacher to put me right into the mix with the kids vs off to the side.  Doesn't she know that I am kinda center stage material ;)  But I had a good time and my class did great! Woot woot

Maggie had her dance recital shortly after my music concert.  She danced to the song Ding Dong the Witch is Dead from Wizard of Oz.  She did pretty awesome, and that means a lot coming from a big brother.  And this was a big year for my dad too, he got to get up on stage and dance a song with Maggie in the Father Daughter Dance.  They rocked it to If You Wanna Dance With Me. 

 Then as the school year wrapped up, I graduated..... again.  Yep, big Kindergarten Grad here!  And the red/pink shirt pic is me and my class during our field day at school where we compete against each other.  It is a pretty fun day. 

We had a family trip to Milwaukee to see the Brew Crew play.  Even got our pic taken with Bernie.  We had nice seats, the whole bathroom thing was kinda of a mess - no pun intended.  And then all us kids got to run the bases after the game.  What the staff failed to tell us as we waited in line, was that there was no way for me to get down there in my chair.  Dad to the rescue, he carried me down and ran the bases holding me!  Real life superhero there!

 And just when you think it can't get any better.....

My best bud Hannah came back to La Crosse for the summer, just to hang out with me.  Hey, can you blame her.  Check out this smile.  She has been playing with me and Molly and sometimes even Maggie this whole summer.  But I will get into that more on another day.  She has gone above and beyond to help me with my feeding (I can now eat a very very small bowl of oatmeal, over a long period of time, thanks to her and her patience) and she does my new exercises with me too.  She helped out with my horse riding class, that is until she broke her foot.  Yes you read that right, she broke her foot, but after missing me a whole week, she just had to come back to hang out with me, boot and all (she is a saint and has become part of the family if I do say so myself).

   

It hasn't all been fun and games though, I got down to business and did a 8 day intensive MNRI family conference up in the Cities.  Me and Mom went up and stayed in a hotel for 10 days.  During that time, I did 6 hrs of this Motor Neruo Sensory Reflex Integration therapy.  Some of the stuff was.... questionable, but some of it was pretty awesome.  I really liked it.  Plus, Dad, Molly, and Maggie came up and stayed with us on our day off and we all went to the Mall of America.  Was it helpful you may ask, well, as my mom says, before the clinic I was constantly pushing out of my braces (AFOs) and now I am not!!  This is big for me, it means I don't have to do Botox or have surgery yet.  Thank you to my OT, Laura, who suggested it to my mom, and thanks to the cool people I got to work with up in the Cities during the conference.  And, I should say thanks for my mom too, for staying with me - it was hard for her to leave my lil sis' (and my dad) home.  We had a good time though.  They even did some brain mapping pre- and post- the 8 days.  We are still waiting to get the results of it.

After all that jazz, we got to hang out with some of our friends and go "camping" in their back yard.  Well, me and Molly and Mom stayed inside their house.  Dad and Maggie got to sleep in the tent.  But we all got to have fun in the sun and watch fireworks and sit by a fire!  Plus we got to meet some of the "new babies" that have joined our circle of friends recently. Maggie and Beck had a good time tooling around in her jeep - this could be trouble in years to come (or so my parents say).

   

Molly continues to grow.  An I must say, get cuter and funner with each day.  Although she kinda likes to pick on me at times.  Me being the good big brother I am, I kinda let her.  And speaking of growing.... I hit 40lbs!!!  Not to mention I lost another tooth, this time on the top, the day before mine and Mggies's superhero birthday bash - those are capes around our necks, not bibs ;).   We were stuck inside for the main party because of rain, but we still got to try out our new/smaller pool after the party.  Thanks for all the bday wishes and to all the peeps who helped us celebrate turning 6 (me) and 4 (Maggie) - not really 46 (which is what it looks like in the pic below.  My mom didn't think that one through all the way.

So to wrap up this long catch up, we have been busy.  I had another seizure (they think it happened because I was fighting a virus).  I am switching from my PediSure formula to a RealFood Blends type formula and my mom is also thinking of trying something nondairy to see if it helps me not be so congested/sick all the time.  My iron has has been really low, so I am taking crazy supplements (sorry to anyone who has to change my diaper, it isn't pretty if you know what I mean).  My eyes got stronger, so I am waiting on my new glasses.  And I did summer school 4 days a week for 3 weeks in July.  Katelyn has been helping out a tish this summer between her life-guarding and swim lessons job at the YMCA and Victoria is getting/got Married!!! (depending on when you are reading this)  And, my Grandma Shay decided to move up to WI after helping us out with Molly, so my Aunt Julia and cousin Shayne are staying at our place until they all find a new house to live in.  Now, we are just starting to think about the new school year.  I will be in 1st grade and Maggie will be starting Preschool!  Stay tuned for how our summer wraps up.  It could be a tear jerker, but that is all I am going to say about that for now.  Later peeps!