TGIF :)

I recently purchased a bracelet from Cathy's Creations Jewelry where they created a Heterotaxy bracelet to help spread awareness.  Since Heterotaxy is so rare, the community is very small.  There is The Heterotaxy Network on facebook where I have learned alot about Heterotaxy. Its a community that supports every Heterotaxy child, no matter the complexity of the heart defects and organ problems. Cathy's Creations has dedicated a charm for each child with Heterotaxy, in hopes that each parent purchases a charm for each child.  I wear my bracelet proudly and am spreading awareness daily.  (I also added another charm for Zander)

Well Zoe got her DOC Band yesterday, and nothing phases her.  I didn't think it would considering she's been poked, prodded, stuck, etc. so many times.  I was curious to see if she would sleep ok with it at night, and sure enough, she did.  We go for weekly appointments to see if the band needs any "reconstructing", where they will shave some of it off.  We should see some changes in her head shape in about a month.  Just waiting for Bling Your Band decals to come in so I can decorate it, as well as attaching some fabulous flowers (velcroed) done by LittleMacBoutique.  Nothing will stop her from being fashionable :).

I thank my husband every day (at least I think I do) for all that he does.  But I'm going to convey this in my blog and I hope he reads this.  These weekly appointments are taking a toll on him.  He has a phenomenal work schedule (on 24 hours, off 48 hours), however he works at an extremely busy firehouse, or if he's detailed, he's detailed to another busy house.  In essence, he's rarely at the house and always on calls.  Sometimes he does 24-27 runs, which means he's up for 24 hours.  He then comes home to watch our kids.  In essence he has two full-time jobs.  And then throw a dash of Zoe's appointments in the mix,  its tiredsome. 

I work full time and I'm fortunate enough that my work allows me to leave early or show up late so I can go to these appointments.  But I work at a law firm and I have billable hours, which I have to make up or I have to use my vacation time.  I'm trying to bank as many vacation days as possible because we don't know if and when Zoe's heart surgery will be, or if my Mother-in-law is sick and can't watch the kids while Mike is at work, I have to stay home.  So its hard for me to make all of her appointments.

She has weekly physical therapy, which she will have until she starts walking.  I'm not sure when the weekly appointments will go down to twice a month, but sine she's still having some tightness in her neck, we still need to focus on getting her torticollis rectified.  Now she will have weekly DOC band appointments to see how her head is reshaping. 

My husband does alot for our family.  He also cooks (and is a fabulous cook).  We are truly blessed that Zoe's outcome is amazingly better than 5-6 months ago when it was all "gloom and doom".  However, all these weekly appointments, then throw in Pediatric Surgery, Cardiology and Netonatalogy appointments, its very tiredsome and grueling. Luckily nothing phases Zoe, but its stressful on us.  We also have a little boy that needs constant attention.  This year has been so hard emotionally and physically.  I now know why parents who have children with CHD problems or some other defect or disability, stay home.  How can you go to work when your child has so many appointments?

So honey, if you're reading this, I want the world to know how amazing you are.  You are an phenomenal husband, father, care taker, the list goes on.  THANK YOU for everything.  The kids love you so much and you know when you walk into the room Zander and Zoe's eyes just beam and light up.  So thank you for being you.