A LiL rough patch

As some of you may know, I had my first seizure the first part of May.  Turns out I was getting a lil stomach virus or something and the medical world thinks that may have been what set me off.  Anywho, everyone was hoping it was a one and done kinda thing.  They just increased some of my meds and called it a day.  Then last week I went through the airway and digestive clinic up at Mayo in Rochester - long story short, it is a week long clinic where I met with ENT, GI, Pulmonary, Nursing, and had a minor surgery (they took my adenoids out again and took some biopsies of my stomach, intestine, and esophagus - big words for a kid I know, but when you live my life you get used to big words). And on top of that, since we were up there anyways, I did a 3 hr gait lab test and had an MRI of my head and back.  It wasn't all fun and games, but it really wasn't too bad.  Me and mom got to stay in a hotel one night and we stayed in the hospital one night.  The other days we drove back and forth cause we both missed dad and Maggie. We get the results of all this junk this week.  But my experience with the medical world makes me believe it will just lead to more appointments.

 

Then for father's day weekend we went down to Milwaukee to visit my cousin Zoey, her parents, and hang out with Grandma and Grandpa Servais too.  I decided to shake things up a bit and had my second seizure on Saturday night - only this time it didn't stop on its own.  I got to ride in an ambulance to Children's Hospital and they finally got me under control in the ER.  For good measure they admitted me to the PICU for the night and most of Sunday for observation since it was such a long seizure.  We got discharged late Sunday and I decided I didn't want to drive the whole 3 hours home that night, so I got a little fussy in the car and my parents fell right into my master plan.  We got to stay in a hotel in the Dells.  Just me and my folks - my grandparents took Maggie and Toby home with them as we were sure how long we would be in the hospital.  I love staying in hotels when I get a big comfy bed and super soft pillows all to myself.  Anywho, we are laying kinda low this week and each day I get a little bit more energy and am acting more like myself.  My arms are pretty beat up from all the blood draws and IVs and junk - but I'm tough so I can handle it.  I just hope my parents can - they aren't as tough as I am ;)

Some weekend shenanigans

It must be summer because me and the fam have been busy..... don't have much to say but got some good pics along the way.  Memorial Day weekend we were at my Grandma and Grandpa Servais' place cause my Aunt Kristi was in town - and Zoey talked her parents into joining us all too.  We hit up the Chippewa zoo, played on the playground, did a lil golfin, and caught up on some sleep.  My mom, grandma, and Aunt kiki hit up an Amish Auction too.

    

 And then we decided to try out luck at hiking.  We drove to Trempeleau and hit the trails.  My sis was a rock star and made it all the way to the top walking herself.  My dad did well toting me on his back.  My mom, between the baby belly and the bum leg (well, I guess it is healed up but she still walks with a limp) survived.  We may have had to take a picture break now and then for her to catch her breath - but you didn't hear that from me.  When we got back down the bluff, Maggie got to put her feet in the Mississippi as her reward for doing a stellar job.
   

 

Schools out For Summer

So even with all my appointments and all the running around my fam has done this past month, I managed to graduate from 4K!!!  This means next year I will go a full day of school, all 5 days of the week (my mom is a lil nervous, but I told her not to sweat it).  Here are some pics from my graduation and a field trip my mom got to chaperon.

And for those of you interested in my last string of appointment.  Turns out the medical world just can't get enough of me.  The results of all my tests and stuff when me and mom were up in Rochester for 3 days..... now they want me to spend a whole week with them.  So middle of June we will be up there again.  This time we will see GI, ENT, Pulmonary, have an MRI, do a gait lab study, visit with a general doc, and maybe have a minor surgery - a probe/biopsy of my esophagus.  I know you are all jealous (not).  My sis decided to take a pic in honor of me and what I have to put up with...

And since she looks so tough here (in honor of me), I thought I should also share a pic of her in her dance outfit.  I was a pretty proud big bro when we went to watch Maggie preform.  She did great!

Guess What...

What's been goin On

Ok, now that things in the Shay household have calmed down just a tish, thought I would update everyone and give a shout out to my mom, since it was just Mother's Day!!  You're the Best!!

Where to start.... I decided, well I guess it wasn't my decision, but I gave my mom a scare a couple weeks ago.  I had my first seizure.  It happened while I was sleeping.  Toby (who never comes into my room by himself) wondered in which caused my mom to come check on me.  I threw up, and while she was cleaning stuff, I went into a seizure.  The whole fam ended up in the ER that night. Now, I have a 2 day sleep study scheduled up in Rochester to see if they can find out what my deal was.  That is the end of May.  In addition to that appointment, I also have an appointment scheduled for Allergy testing - maybe they can figure out why I am always stuffy.  Then I have a gait lab study coming up.  They are trying to figure out if I am a candidate for a surgery - possibly this summer. More on that if it gets scheduled.  Anywho, about a week after my seizure scare I decided to make my parents nervous again.  I wasn't able to keep anything down for several days.  This won me a visit back to the ER for dehydration and a check on my g-tube.  It took several days, but eventually my lil sis came down with the same cold.  So for about a week my mom, my Grandma, and my nanny Hannah had to deal with 2 sick kiddos.  So for Mother's Day me and Maggie decided to be healthy again - my mom was very Happy.  So now it's back to the grind stone.

More exciting news to come....

My Friend

So I decided, since my friend Hannah is taking a week off from keeping her eye on me all the time, I thought I would share some of the "fun" we have had the last few months on my blog so she can get her Conner fill while she is away.

 

She takes me swimming at the YMCA cause I love the water

 

And just recently she learned to use my UpSee so now we walk around the track at the Y after we swim... soon it will be warm enough to walk around outside (I hope).

 

She took a pic of me when I was sad to get on the bus one morning - some days I just wanna sleep in and be lazy.  But she makes sure I get moving in the morning.

She laughs when I laugh when I get myself all messy workin on eating food.  Don't tell my mom, but I like makin a mess.  As you can tell in the next picture, when I'm not makin a mess with food, I let my hair go wild.  Then the opposite of a mess, Hannah helped me roll out and spell my name when I was in my stander with play dough.   

My favorite thing to do is cuddle and take a nap, when I can talk Hannah into it.  And I really liked meeting a puppy she was dog sitting one day.  Maybe some day Toby will take a picture with me like this.   

 

And one day we even decided to dress like twins - well, at least our shirts matched.

 

 

Now that I went on and on about my friend Hannah, I also wanted to say much thanks to my Grandma Servais for steppin in and helping me (and my family) while Hannah is on her vacation.  Me and Grandma have been having a good time hangin out as well and it was even nice enough to sit outside in the sun a bit.  Anywho, here's a shout out to my Grandma. 

 

Hittin the Slopes!

Big Props go out to my mom's cousin Katelyn.  She is a ski instructor at Mt. La Crosse and is now helping out with the Adaptive Ski Program.  Well, she talked my mom into signing me up and today was our first day on the slopes!  It was a tish chilly, but I had fun!!! As long as she kept me moving that is.  I even liked the chair lift - my dad would never be caught dead on one of those things, so I guess you could say I am braver than him (hehehe).  Maggie got to watch me a lil bit at the end and she wants Katelyn to teach her to ski now, but my mom said she has to get a little bit bigger first. Maggie and dad went out on a dad and daughter date, or at least that is what mom called it.  They went to pizza hut, Maggie loves pizza.

 

Because I got to go skiing today, yesterday mom and Maggie had some fun of their own, sledding with Maggie's friend Addie and her fam.  They had a real live horse and Maggie got to help feed it, she rode on a four wheeler, she went sledding down a big hill, she had hot coco, and a bonfire cooked hotdog. Maggie also taught Addie how to make a snow angel.  They had a blast.  Maggie had Addie over for a princess dress up party a couple weekends ago - the saving grace for me was that they watched Frozen and I happen to like that movie too.  Anywho, I thought I would include some pics of the girls having fun since I had so much fun skiing.

      

I also went swimming last week at the YMCA.  Mom and Hannah took me.  Since my mom is just getting to do more walking now, she can't take me by herself, so thankfully my nanny is more than willing to help out!  On a side note, she got accepted into med school and is gonna leave me this fall.  Can you tell by the smile on my face that I am gonna miss her.