NO LIMITS and HIGH EXPECTATIONS!

We are careful most times how we talk about Sadie. It quite often depends on who we are talking with or to.  I want to always be careful that we don't sound too wishy-washy or too dreamy about what we hope she will do or become.  I want make sure that people know that we live in today and have realistic expectations.  However, I also don't want to sound as if I am cutting Sadie short on what her abilities may be.

Where is this going?  I'll start with last week.

Sadie goes to Physical Therapy twice a week at Mary Free Bed.  Last week Wednesday she also had an Oral Therapy Evaluation to see if she could start Oral Therapy. 

Just a "refresher"; Sadie was taken off all foods and can have NOTHING orally since December 2011.  She has what is called a "partial swallow" and that is when she swallows half of  her food goes to her stomach and will be metabolized "normally", where the other half was going into her lungs.  At that time, this would happen and Sadie would never even cough to try to get it out.  This was "normal" for her.  Sadly, it should have also killed her before she even made it to the states.  One of her "miracles", as the doctors say, that she didn't get bacterial pneumonia in Africa and passed from it.

Sadie's Oral Eval consisted me holding my breath while watching a therapist put some vanilla pudding on Sadie's tongue and watch how she responded to it.  You can see that Sadie was very curious about it....and enjoyed getting more!  The one thing I missed when we took her ability to eat orally away, we noticed a loss of her tracking items.  She would eye the spoon and follow with her eyes and by turning her head.  Her losing the ability to eat, took more than just that away from us.  But, she had her eye on the vanilla pudding and was not letting it out of her sight.  We were both very pleased that we watched her taste and swallow the pudding! This does not mean she will be eating steak or pizza soon...or ever...but it IS a step in the right direction! 

Fast forward to today...first Oral Therapy session and Sadie was reaching/grabbing the therapists hands when she was letting her taste the yogurt...she wanted more!  She also got her first taste of a sucker.  REAL USA candy. She may be hooked. This has opened a new world of rediscovering taste. We can't wait to watch and experience this with her!

On that same day of Sadie's Oral Eval I was playing with her that afternoon.  One thing we (Sadie, the therapists and us) have been working on hard is Sit to Stand. This is not Sadie pulling herself up to a standing position, but rather us helping her stand from a seated position. As she gets older this will be a valuable tool for us transferring her from on seat to another.  She is quickly learning to master this as well!  Sadie's head continues to be very heavy for her and a source of weakness.  So, to master the weight baring on legs, with the muscles of the torso as well as head/neck control takes a lot!!  I wanted to share what we accomplished last Wednesday.

 

 

There is a family that we know that we get alot of encouragement from.  Their amazing daughter was born with Cerebral Palsy.  They have told us stories of how people treated her and the appalling advice people would give to them. I can ask real questions to them. I don't want to sound like I am living in a land where Sadie will grow to be "normal" and healthy.  However, I never want to short change her by giving her limits either or lacking in expectations.  I was told by this mom "Don't you EVER set limits!".  This amazing family had others in their family tell them that their daughter would do nothing.  That there was no hope for her.  Their daughter, this AMAZING woman, has inspired Nick and I in SO MANY WAYS!  Not only can she communicate, she does so in more than one language!  She has more college education than majority of the people we know! She has traveled to other countries telling others about God's love.  She is a walking witness.  She writes...she is one of the most amazing writers.  We were very surprised when we got our monthly edition of "Rusk Crumbs", a newsletter put out in our church with updates of all the going ons...and this amazing woman wrote about our Sadie.  I hope you can read it here.

 

I e-mailed her this morning to thank her for writing such a wonderful article.  In an e-mail she sent back she stated the following,

 

"Sometimes, I too, feel so lonely and misunderstood in my life, and I have to keep reminding myself "It's not about you, girl; it's about God and His glory. "Not to us, O Lord, Not to us...but to Your name..."

Christ in us, the hope of glory...

 

All that....from a girl that long ago, people said would not do anything.

 

So, the sad news for Sadie is that she will just have to be working THAT much harder....for not only do we have NO LIMITS set for her, we also have HIGH EXPECTATIONS!!

 

Sadie's Chariot Fundraiser has come to an amazing end!  I am going to keep you in anticipation just  a bit longer.  My great friend, Marissa, will be announcing the total with some of her insights, and I think that all needs to be shared together.  She will update the facebook event page I am certain, and I will probably cut and paste what she wrote here.