Heterotaxy Awareness

Good afternoon!  Its been months since I last updated the blog.   Life has been BUSY for me.  Work has been crazy and then just being a normal family of 4, leaves me zero time to actually just sit down and write.

Zoe has been doing AMAZING.  Can you believe she's 2?!?!?  A few pictures from her February celebration.

And how can I not include my handsome son, who's 3.5?

 



 

Easter 2014

 

 

 

So I'm sure most of you are wondering how Zoe has been doing medically?  Well since June 2013, we have had only 1 hospital stay (thank the Lord).  In December she caught RSV and we had a few day stay at Children's.  She still gets Phantom Fevers bi-weekly.  Its very frustrating to say the least.  She will have a fever of 100-102 and show no other symptoms.  She'll be running around antagonizing her brother, eat, drink and act normal.  Luckily they last only a day or two and then breaks.   We experienced one last night, and today she's just fine.   Makes 0 sense to me.   She started occupational therapy in January and is loving every minute of it.  

 

Zoe loves is obsessed with Frozen.  She sings screams "Let it Go" every day.  She really believes she's a princess (which she is :) ).  She picks out her own outfit, purse, bracelet and bows.  LOVES shoes.  She may own more clothes than me.  Loves her nails painted.  She's 2 but going on 16.   Her vocabulary has increased.  I love being able to have conversations with my two kiddos.  So overall, she's nothing short than a Miracle.   Never in a million YEARS did I think we would be at this point in our lives.  Yes we still have doctor appointments and some therapy appointments, but this is a walk in the park compared to 2011-June 2013.  We have her cardiology appointment on May 28th.   Although I know her heart is healed (although anatomocially different), I still get nervous for this appointment. 

 

I wanted to share more good news.  Another Heterotaxy organization started up, Heterotaxy Connection.  Its an amazing organization reaching out to families who are currently going through this journey.  Please go and navigate the website.  Its full of great resources!

 

Illinois granted the Proclamation that now every May 4th is Heterotaxy Awareness Day!  So exciting for our family and all the other families affected with this illness.  A ton of the parents have worked hard on the other state proclamations and we all celebrated together in person and via social media on May 4th. 

 

I was so fortunate to meet the three other families.  One of the mothers has been such a great friend throughout this journey (actually one of the Founders of Heterotaxy Connection).  She found me when Zoe was in the NICU.  Her daughter, Hallie (her page Helping Hallie) was at Childrens at the same time.  So Hallie's mom, Necia, and I figured out a location to meet the other families.   Here are some of the photos from this great day courtesy of Cute As A Button Photography

 

 

 Heterotaxy Warriorettes (Zoe, Hallie and Emma)

 

Amazing Mothers and their Warriors (L to R: Hallie, Zoe, Emma and Alex)

The Illinois Families

My Precious Family

 

 

I apologize that there are so few blog posts, but honestly we're just a normal family of 4 with two working parents with two crazy toddlers.   And I wouldn't change it for the world :) 

 

Till next time.