Tuesday, June 19, 2012

HI! Well, I wanted to share some photos with you and do a quick overview on how our little girl is doing.....and our new little BOY! Thats right, Esther is going to have a new little brother to protect her! God has showed himself so incredibly faithful! This new little one has shown to be very healthy and is presenting no symptoms or problems that Esther has! All praise be to Him! 

Esther is doing very good! She is learning new signs still, she knows about 10 by now and is picking them up quicker than I can keep up! Billy was scratching his head the other day and now she will look at us and scratch her head! Amazing what kids pick up....and how fast! :) Billy and I are both wanting to learn sign language, so if any of you have any recommendations, let us know! :) 

She still is needing oxygen 24/7, so it keeps us pretty grounded as for now. But, nothing is out of Gods hands and we know that whatever He has in store for Esther, He has in store for us as well. Esther, in so many ways has saved us and has kept us exactly where He wants us to be, closest to Him :) 

Suctioning is also her second biggest need. Its where we use a machine (suction) to clean out her trach, from the saliva that we normally swallow. This keeps us very busy as she needs suctioned about 50-75 times a day! Quite a bit. 

Esther is on a ventilator at night time to help give her a break from breathing so hard during the day. Her respiratory rate is so high they compare her breathing to someone running all day - so at night it gives her a break from breathing so quick and fast, to relax and slow down and get a good nights rest!

As for now, we have no surgeries or even doctor appointments in line for her, which is kind of weird for us! We are enjoying her everyday as she gets bigger and seeing her development come along! Thank you to all of you pray warriors out there! You do not know how much of an impact you have made on this little girls life! 

1 comment:

  1. Hi! My daughter Abby also has CCMS. We talked a while back, but I lost your email. I stumbled on your blog and am so glad to see Esther thriving!! She looks great.

    Signing Time is a great series that teaches signing in the context of songs and conversation. She makes it really easy to pick up and Esther will probably like them too. They have a lot of the videos at our local library, so check there. She also has iPhone apps.

    We made it a goal when Abby first came home that we would learn one sign a day. We would practice it at the dinner table, which encouraged our son to learn it as well. We don't need to sign nearly as much anymore because Abby is talking, but setting that goal was really helpful in the beginning.

    Feel free to email me at juliebleach@yahoo.com if you want to talk more about medical stuff. :)