Conner Here

Hey All,

As I lay here in my crib, trying to fall asleep, I can't help but listen to the end of the Packer Game.  My mom is watching it, and it is kinda loud (she must be losing her hearing in her old age).  Anywho, hearing the game just takes me back to my NICU days.  You know, I spent the whole football season in the hospital last year (and then some).  I kinda miss listening to my folks give the nurses and docs a hard time - you know, we were in MN, so there weren't a lota GB fans around.  In fact, I remember my first Green Bay game..... I got to sit with my dad and watch it.  I think we both took a nap, so I don't remember if they won or not, but it WAS the packer, so they probably did win! 



Playin in my High Chair

So, other than football season starting and my Brew Crew doing AWESOME, I think I'm doing pretty darn swell.  My mom is starting a couple new jobs (school PT and home health) here soon and is in the middle of one of her classes.  So with all that and taking care of me (I keep her on her toes) she is pretty busy.  In fact, I'm surprised she finds time to do any cleaning what-so-ever.... but according to my dad, she didn't do much cleaning before I came around either.  We are starting to look for a new PCA for me... my Grandma Servais isn't going to be able to help out as much in the winter, so we need to find someone from by us.  We met a lady today that was pretty nice, but she isn't able to help out on Mondays..... so I guess we are still looking for someone interested in helping me out on Mondays at my new daycare.  Oh yeah, that's right, I forgot to mention that my mom is going to be taking me to a daycare when she starts her new job.  It will be for one time a week to start out with, and eventually be two days I guess.  Not sure how I feel about this.  I think I will just puke on a couple people, maybe stink'em out with some good poo diapers, they'll be sending me home in no time.  At least that's my game plan. 


The Fam in Milwaukee by the Lake



Well, looks like the Pack is going to pull off a big WIN for the opener!!  This is by no means a "little miracle" as we all know they are amazing ;)  I wanna say thanks to my Uncle Kurt and Aunt Ashley for letting me and my folks camp out at their new house in Milwaukee last weekend.  Man is that a long car ride, but it was a fun trip.  I better get going, its kinda late and I need my cutie sleep.  Just wanna say Good Night to my dad - he is on the road for a few days - and I Love ya! 



 This is Conner Shay, Signing out! 

G'night!

Medical "Stuff"

Enjoying a moment withOUT my helmet on - only a few more months to go!

Well, just a little update on lil dude's medical situation.  Over the past month, with all his follow ups and appointments, there have been several changes made.... plus some overdue pics, its a miracle!  Enjoy!



Family Shot 8/2011 



Bath Time Fun?



-We are slowly decreasing the amount of one of Conner's seizure meds until he is off it completely and increasing the other.... hoping to get down to only 1 seizure med.  Once this is done, he will have to have another 24 hr EEG to make sure he can handle this.

Bring on Football Season!
GO PACK GO

-Conner continues to "expell" the contents of his stomach often.  In other words, we are changing outfits (both me and him) several times a day.  We have increased his calorie count by adding an extra scoop of formula to the mix, taking him from 22cal to 27cal.  This way we don't have to give him as much volume.  We also are playing around with ThickIt - hoping this will help keep things down.  We are down from 6+ throw ups a day to 3ish. 



Me and Mom - she is proud of her flower!



-A swallow study was just done at Mayo.  Not good!  Conner cried and screamed through the whole thing.... making the results inconclusive for the most part.  They did catch one swallow on film and I guess it went down the right way.  But most of the food/liquids just sat in the back of his throat       (in the area where our automatic swallow normally takes over).  Recommendations from the test --> keep working on thicker substances      and avoid liquids for now.  My thoughts on the test.... waste of time at this point in time.  Oh well, now we know.  Of course, he didn't throw up during the test, he waited until the machines were moved and turned off to demonstarte how well he can chuck up everything over mom. 

-Vision continues to improve slowly but surely.  He is definately looking at us more.  And he does better at our house vs other locations. 

-Speech/OT is expanding the oral feedings.  We tried crumbs last week and this week attempted jello.  Conner is still not taking very much by mouth, but is tolerating us messing around with him more. 



GO BREWERS!



-PT continues to work on sitting balance.  It is our goal to get Conner sitting before he turns 2.  He hast started rolling from his belly to his back - but he only rolls one way.  We are also working on stretching out Conner's neck.  He has always perferred looking to the right.  We always attributed this to his vision issues.  Well, now we are going to start treating torticollis - even though we are not completely sure that is what it is.  Can't hurt. 

-And lastly, Conner has an overnight sleep study coming up in September.  We did an overnight study at home, where he was hooked up to a machine all night and then we turned it into the docs the next day.  It recorded his O2 sats and his heart rate.  Turns out, the test had some abnormal results.  So now we get to sleep at Mayo to see if they find anything.  Could be related to sleep apnea, seizures, or shallow breathing.  He sleeps really well overall, so I hope that doesn't change whatever the test finds.  Conner will also be having a pH probe and lower respiratory track endoscopy sometime after this sleep study, but it is not scheduled yet.




            

Thanks Grandma Servais for watching me this summer!

Don't know what we woulda done without you :)

 

Thanks Grandpa Servais - You are a great Holder ;)