Thursday, September 17, 2015

It is now September 17, 2015 and I can tell you a week ago I would of told you all the Faith is 100% back to base line and even better!

We have said goodbye (still crying) to Amy, Faith's nurse of 3 years.  She moved to Washington.  We have hired a new nurse, Hanna!  She has been with us since summer 2015 and she is fitting it well! She works Monday- Thursday. Faith (and the family) really like her.  She pushes Faith to do her best and gets all the daily duties for Faith done, and that's ALOT!!

All her face muscles are back!!  She does still have a slite issue with one of her eyes pulling in some.  Every time we go to the eye doc she is always impressed how well Faith's eyes are doing.  The doctor told me years ago Faith is one of her only patients with SB (spina bifida) and not wearing glasses. ;)  Her eye pulling keeps getting better and there was talk of going to the OR to have it fixed but no talk anymore, at least at this point.

Faith is walking with her walker faster and better, then she ever has!  A new brace for her right leg and it really helps with walking and standing.  It is called a KAFO (knee, ankle, foot, orthosis).  She walks easily 40 feet, which is a long way!  We have her free stand next to a table for one of many of her daily exorcises and she will stand or an hour with no break if we would let her.

School for Faith has opened up a whole new Faith!  She LOVES school, her teacher is amazing, we love Ms. Hanni!!  I really didn't want to send Faith to school yet but, I knew she really wanted to go and that she would be protected by God.  But you must remember that not only is she my youngest but she has all these needs and she wouldn't be in the same school at the older two siblings.  But after talking to and seeing her teacher, Ms. Hanni work with the students I became so much more at peace with Faith being at school.  She is in pre-school Monday-Thursday in the afternoons only.

Really, I can't tell you in words how proud I am of Faith, for how far she has come since last October!!  The doctors said she wouldn't make it, but here she is still on earth with her "Mama", the ONLY word she can speak with her voice.  I feel soo blessed, because when Faith does speak with her voice she says my name.  I know that is selfish, but it's true.  I pray that one day she will say Dada.  I think she can do it!

Now back up one week from today to, Friday, September 11.  We have hired a new nurse that only comes on Friday.  Since I work in the morning Monday- Friday we needed someone to watch Faith on Friday since Hanna is Monday-Thursday.  It was the new nurses 2nd Friday, her and Faith and Mic got a call at work from her say "Come home now, Mic!!!"  He of course went right away and was home with in minutes.  Faith was not breathing and the nurse was doing chest compression.  They got her to start breathing again but she was just lying there in her bed not moving, but oxygen levels were 100%.  So the best way to describe it is, it was like she was in a comma.  She ended up not moving her arms or legs for a little over an hour.  It was really hard to see her this way.  Normally ( i laugh saying normally) when she passes out, she snaps out of it pretty quickly and back playing in no time at all.  The nurse said Faith didn't want to do an exercise, and got mad and passed out.  Faith does get mad and pass out often but not as much anymore.  That all happened in the morning and by 8 pm she had been sleeping for about 2 hours and I went in her room to check on her and she saw me and reached up with both arms fully extended and gave me a big hug and in that moment I said THANK YOU JESUS!! She has regained control of her arms!  By the next morning she was what I thought 100% back but when we were walking she is still really weak.  Please pray she will regain the strength in her back and legs to be able to walk like she use to.  I know time is the enemy, isn't it always? :)


  1. Woot woot that's my best friend!!!!! You go girl get that strength back like you always do. Prove doctors wrong like you always do and most of all be the sweet happy little girl that you are!

  2. Woot woot that's my best friend!!!!! You go girl get that strength back like you always do. Prove doctors wrong like you always do and most of all be the sweet happy little girl that you are!

  3. I absolutely LOVE the pic of her on the horse with Mich!!!!!! I remember when we were told she couldn't ride the horse like the rest of the kiddos. I was having non of that of course she would. She is going to be able to do anything any other kid could do, but just in a different way! Love your little girl and how smart, fun and happy she is! Miss you guys!

    Nurse- Amy