I have a one year old!

Posted by on Nov 4, 2013 in Update | 3 Comments

Hey everybody! I am so sorry that I have not updated the blog in a LONG time. The biggest update is that I have a one year old! Phoenix turned one on October 6th (yes I know that is almost a month ago) I can’t believe that so much has happened in a year. There […]

Outings with Mommy

Posted by on Sep 15, 2013 in Update | No Comments

With the weather cooling off we have gone out more.  We went to Target the other day, and a lady came up to me and asked what syndrome Phoenix had.  After I told her she asked what crainofacial team we use.  I said that we go down to a specialist in Dallas, his name is […]

Labor Day 2013

Posted by on Sep 5, 2013 in Update | No Comments

Phoenix, Luke and I just got back from a long weekend in the St. Louis area.  We had a lot of fun! It was really good to see family and friends. Phoenix went swimming. This was the first time she kinda enjoyed it. After swimming she rode a zebra. Played with some cousins. Showed off […]

An Over-due Update (part 2)

Posted by on Aug 30, 2013 in Update | 3 Comments

Phoenix had to spend 3 weeks in her casts.  She got around pretty well in them.  We have hardwood floors so it was pretty easy for her to drag herself to get where she wanted to go.  She would put one arm in front of the other, so you would hear clunk clunk, clunk clunk […]

An Over-due Update (part 1)

Posted by on Aug 28, 2013 in Update | One Comment

I realized the other day that I have not updated the blog.  There has been a lot that has happened! To start a couple months ago we met another Apert family who only lives an hour away! Their little boy, Emerson, is just a few months younger then Phoenix.  I love meeting other Apert families.  […]

I Scream…You Scream…We all Scream for Ice Cream!

Posted by on Jul 10, 2013 in Update | No Comments

We all need an ice cream break sometimes!    We are leaving in less then a week for Boston! I spent yesterday finishing up some details for the trip. It is crazy (in a good way) to think that in about a week Phoenix will have fingers!! This surgery will be releasing her thumb and […]

And the results are in folks!

Posted by on Jul 4, 2013 in Update | One Comment

Sleep Study results are ‘officially’ in! I received the results of her study via voice-mail, but when I called to get the official report the nurse practitioner was on vacation…so no ‘official’ report for me.  A couple days ago we got the full report! Phoenix has no sleep apnea!! YAY!! Sweet Little Hands Don’t forget to […]


Posted by on Jun 25, 2013 in Update | No Comments

We have t-shirts for sale!! All proceeds to go to help off set her upcoming surgeries!! Just follow this link.          

Lopsided Pigtails

Posted by on Jun 21, 2013 in Update | 3 Comments

Every child with Aperts is their own text book. This advise was given to me very early on in our Apert journey. Throw What to Expect the First Year out the window! More advise. All great advise. All frustrating advise. There are times I wish I could just know if something was an ‘Apert thing’ […]

July 19th

Posted by on Jun 20, 2013 in Update | 3 Comments

We have a surgery date! We have had it for awhile now, but I just haven’t publicly posted it yet. July 19th. July 19th is the last day we will ever see Phoenix’s little rosebud hands. July 19th is the last day we will see her little piggies in a blanket. In a way I […]