Zachary James

Zachary James

Wednesday, May 9, 2012

Feelin' Bubbly we are again.  Tomorrow Zac will have his third round of tissue expanders removed!!  I feel so fortunate to have my entire family with me this time.  Traveling alone with Zac is not fun...actually, traveling with Zac and the entire family is not fun either LOL.  We landed at Chicago Midway this afternoon and for the first time, I felt an overwhelming feeling of familiarity.  Not the kind of familiarity that says "I'm home!"...more like the kind of familiarity that says "ugh...this place again..."  No disrespect to Chicago...I am sure it's a great city, if you are visiting for any other reason in the world.  I mean, there is a TON of stuff to do...if you are up to it...and sadly, due to Zac's condition - we usually are not.

I was pretty proud of myself today - introducing Bruce to my normal Chicago routine....get off the plane, roll Zac and carry-on luggage to baggage claim, schlepp luggage to the rental car (sometimes by shuttle...ugh), drive to hotel area, eat at Portillo's (baked spaghetti...YUM!!), pick-up necessary long-term items at Target - head to the hotel for the night.  I can't believe I've been here enough times to actually establish a routine.  It seems just like yesterday that I was the 'new' mom to all of this and I was meeting Beth Nagel and her son Sully for the first time...Beth seemed like a pro to me and I was in awe of how open and fabulous she was, I longed for her radiant glow as she talked about Sully and the progress they had am a pro!  LOL  Okay, okay, well, no one is ever a pro at this matter how much practice you have, there's always a little zinger that gets thrown in.  I just hope I can pay Beth's kindness forward and someday be the mentor for someone else that she has been to all of us.  We love you Beth!
Showing his muscles and 845cc in his front expander!

845cc front; 765cc back

Zac is up for the 2nd surgery on Dr. Bruce Bauer's schedule tomorrow - expecting us at Highland Park Hospital at 8 a.m.  Zac currently has 845cc of saline in the front tissue expander and 765cc in the back tissue expander!  This is the first time that Zac has ever had more than one expander and although I am not excited about going to the hospital tomorrow...I am highly anticipating the results.  Zac was in amazing spirits today though a little crabby from the plane.  We played the Gummy Bear Song, one of his favorites on YouTube, over and over tonight until he started to yawn.  Tomorrow I will be arming myself with lots of cars and lots of Elmo and Chuggington on the iPad.  I pray that he can stay in good spirits once we arrive at the hospital.

Please pray for my little guy tomorrow - prayers for a successful surgery and a fantastic recovery with little discomfort.  Pray for Dr. B as he touches four children tomorrow and changes each of their lives in an amazing way - I pray that God will guide his hands over our children for phenomenal results.  Good night all!  Thank you for your prayers, positive thoughts and support.  If it weren't for you who have supported us with the cookbook and our fundraising efforts, I would be here alone with Zac and tomorrow would be much more difficult for all of us.  In His Name - Amie

Wednesday, May 2, 2012

The 700 Club!

Well...we have made it....9 weeks in and Zac is a member of the 700 Club - 785cc in the front expander and 705 cc in the back expander!  During this past fill, the front port wasn't numb yet...eek.  Zac cried a little but kept still so we could finish.  And look at the happy look on his face right after this week's fill!  What an incredible little guy!  He is my hero!!!                                                                      

We had a busy weekend with lots of birthday celebration.  We went out to dinner for Zac & Zoie's birthday last night (yes...born on the same day...four years and 1 hour apart for those of you who don't already know).  Zac loved drinking from the bowl of salsa...and Zoie enjoyed the company of her best friend, Dani.  Watching Zac and Zoie sit side by side and blow out candles - Zac with his Lightening McQueen candle and Zoie with her giant sombrero it made me think of my brother.  I know that Zac & Zoie have a special guardian angel.  Next week we head back to Chicago.  Whew...these 10 weeks went quick!!  Please pray for us for safe travels and a successful surgery.  It really helps to know that Zac is in the best hands with Dr. B.  Last night I came home to an email from Dr. Bauer saying that Zac looked 'fantastic' and 'Happy Birthday'!  Thank you God helping us find Dr. Bauer - he is amazing!

For those of you who don't know, we were lucky enough to have a wonderful story written about us in Images Magazine.  If you haven't read it...check it out, not only is it fantastically written by an amazing journalist with her own amazing personal stories - Amanda Christmann Larson but it also features some terrific pictures by a photographer named Jerri Parness - Zac was absolutely in love with her and she had him walking hand-in-hand with her during the entire photo shoot.   Thank you ladies for painting our story so incredibly and thank you Images Magazine for letting us share our story!