Poor Baby Simon

Simon came down with his first illness, sounds funny to say about a little guy who knows the hospital better than any where.  He came down with croup.  Molly reports that he pretty much barks all night....they feel like Simon is a puppy.  In better news he is up to 11 pounds!!  That is a full 7 pounds since birth!

Next week they go to a gastro doc at the Cleveland Clinic to get some needed relief for the reflux.  I feel badly for Molly when people say, "oh I get it, my child has reflux too."  Where truly, we don't get it!  Reflux for baby Simon and his condition is HORRIBLE!!  Molly and Clint knew this going into everything and it is not a surprise, but poor baby!!  Imagine your worst case of reflux ever...then start multiplying.  

His next surgery is this coming Wednesday, September 5th.  Please pray that Simon does well.  This is another routine surgery to open the width of the esophagus.  These will continue for quite sometime.

Simon is smiling all of the time, starting to giggle.  He holds his head up so well.  I have never seen a kid make the eye contact Simon makes.  He also happens to have the most beautiful eyes I've ever seen.  Of all people I know, Molly has the bluest eyes....her brown eyed baby however, has eyes of beautiful shiny glass, I can't even describe!  I hope everyone gets the chance to look into his little eyes.  Molly and I sound alike when we talk so I can fool Simon for about 30 seconds that I am her so he gives me some great stares.  


Here is some info on the Baby Simon team for the walk on September 23:
http://ach.kintera.org/faf/search/searchTeamPart.asp?ievent=1026535&lis=1&kntae1026535=DB870402D67B4659BEC28991AE62666B&team=5179240

Baby SImon

Not much to report as Baby Simon is just growing and changing more and more each day!

Here is Baby Simon after a long day of medical appointments, clearly he is stressed out! haha!!

He continues to have surgeries every couple weeks to be sure the esophagus is open.  It is stretched long enough from the main surgeries.  Now it just needs help being wide enough and that must happen quite frequently.

Molly is getting involved with the NICU at Akron Children's as Team "Simon Says" will be taking part in the "Walk for the Babies" on Sunday, 9/23 at 9am at Akron Children's.  Let Molly know if you'd like to walk with Simon's team!  Should be a great event.

Can you believe how much he is growing each day?  Sorry the pictures are screen shots, the facebook app is terrible now and this is the new way, for now! ;)

More fun at the Simon Fundraiser

Thanks to Ron McAvoy our event was on the blog at St. Paul Church.

http://saintpaultoday.blogspot.com/


Here are a few more pics...I still have more to upload...

Here is Molly and baby Simon!  I have one of the 3 of them...and check out the St. Paul blog too!  (sorry Clint.. :)

Our raffle ticket tables were filled with amazing items!  Thank you to all who donated and congratulations to all of our winners!!!

 This is Mary Ellen and myself, we helped plan with the event with a few of Molly's friends too.  It was a lot of fun....but what a day!!

This is Simon's FAVORITE nurse from the NICU, Lindsay!  She attended the event with her parents!  I have to admit the NICU is an amazing place, but even better when she was there when I visited.  She just loves Simon so much...and everyone loves her!!

Thank you!!

The event for Baby Simon and family was held last night at St. Paul Church.  The amount of prizes donated for the raffle was amazing!  Everything from gift cards, to a photo session, golf, Corn Hole for kids, princess basket, gift wrap, movie night, wine, pasta, and so much more!!  We also held a 50/50 raffle with the winner taking home over $400!!

We had around 300 people attend!  THANK you to everyone who came and thanks for all the messages, we know everyone is busy and its hard to get away!  A DJ came and donated his time which was great background music.  The food was so kindly donated by Guy's Party Centre, Italo's Pizza, and Parasson's.  We had so much help from so many people to pull this event off which resulted in an extremely successful event for Baby Simon, Molly & Clint!

I keep getting calls today and e-mails for those who missed the event and would like to donate.  The pay pal address is simonconger2012@gmail.com   THANK YOU!!!  The donations have far exceeded what we even thought could be possible.  The kindness of friends, old and new was overwhelming.  The members of St. Paul Church who attended and supported the event was so nice to see. It's so true, there are no better neighbors than those who live in Firestone Park, the best place we've ever lived!!  The kindness of friends who have never met Molly, Clint, or Simon but attended to show support because of a connection through a family member or friend really meant a lot to all of us.  THANK YOU does not seem like its enough.  After the event last night I was thinking about times when people say, what is one of the favorite days of your life or a really awesome experience?  I can honestly say I've been blessed with amazing experiences, opportunities, and adventures.  However, last night ranks up with one of the very best.  The kindness of a community, both locally and extended counties away....and kind donations from states away, means the world to our families.

I have a few pictures but will have more soon.....if you have any from the event, please e-mail me at bethbugner@gmail.com and I will upload them here.  Thanks!!

Simon's Event featured in Beacon Journal

http://www.ohio.com/news/jewell-cardwell-benefit-to-help-fragile-baby-thrive-1.325588

Please see the article in the Akron Beacon Journal today!

Hope to see you Friday!

Please say some prayers for Simon as he is having surgery this morning.  We will update on how it goes later.

Surgery #2

Simon will continue with his surgeries to dilate his esophagus this week. On Wednesday he will have this done again and likely every month.  The purpose of this is to continue to open up the esophagus.  Molly mentioned the other day she knows it needs done again as he can't really spit up right now, so she knows the space is getting tighter in there at this time.

Simon has had a little bit of issues with this feeding tube.  He had to have it worked on in the ER the other night as it was bleeding and is infected.  He has to have this in for a while.  The good news is that he almost always eats by bottle and does great.  I fed him a bottle on Friday!!!  He did great and is just a PERFECT baby!  So beautiful and just such an awesome little guy!  He is 9# 13oz now as well!!

The big day is Friday!  Simon's Fundraiser at St. Paul Church on Brown Street in Akron.  We will be in Boeke Hall...this is on the far side of the school and church.  Look for the balloons! :)  Thanks to everyone who has sent messages that they are coming, who have already donated, and whom are helping with donations, etc.  We really appreciate it!  See you Friday, Aug 10 from 4-8pm at St. Paul.  I hear there will be a very special guest of honor in attendance!!!!  Keep your fingers crossed he bounces back from Wednesday's surgery!