Friday, December 13, 2013

Sarah needs a voice

I am going to update on this post, and at the beginning so it won't be missed by any new visitors to the page.  In just a few hours, we were able to raise enough money for Miss Sarah to get an ipad!  Thank you all for your incredible generosity.

Original post follows:

My daughter Sarah is two years old.  She was born with a genetic syndrome called Apert.  It is rare and symptoms vary.  Sarah's case is pretty severe.

Typically, kids with Apert syndrome have what is called craniosynostosis- which means that the plates in their skulls fuse prematurely which can put pressure on the brain as it grows.  Sarah needed surgery to relieve pressure at birth.  We spent three months in the NICU at birth with various complications.  Since then it has been a long, bumpy road for Miss Sarah, but things are finally beginning to stabilize.

Sarah is two years old.

About a year ago, Sarah was just beginning to make words.  She was on track,developmentally.  Just over a year, with a handful of vocal words and vocab growing.  She called Dada and Mama.  She said Lala for Lily.  She even said "G'ma" perfectly clearly for grandmom.

In January, she went in for a hand surgery and came out with a tracheostomy because she was unable to breathe after surgery.  The trache has been a good thing, overall.  She is a happier, healthier kid.  While last year we spent most of the fall in the hospital with several pneumonias, this year, we have been mostly home.  Sarah even started school this year!  But, the trache took away her voice.  Sarah cannot vocalize.

At the time, it was a heartbreaking setback.  She had just begun using her voice when it was taken away.

Since then we have seen wonderful progress. Most importantly, Sarah can breathe well.  Sarah can swallow, so she is learning to take more and more food orally.  Sarah can communicate.  We learned some sign language to teach her a few signs.  Given choices, she can pick.  Like every two year old, she is very good at saying, "no" but she can also say, "yes."  She is learning.

Also like every other two year old, she has temper tantrums when she cannot get what she wants.  But we often have to guess what she wants.  As she gets older, the dynamic is becoming more and more difficult.  No one like it when their child is crying.  When Sarah is crying, I cannot always tell whether she is hurting or bored.  Does she want a toy?  A new diaper?  Hungry?  Did she hurt herself?  Key in parenting a two year old is knowing when to say no, and that is becoming a problem for us.

Since I am guessing, I may not know that I have gotten the right answer until she stops crying.  I cannot just ignore the crying, because sometimes is something important.  She is a smart girl, and as she gets smarter, the disconnect between her understanding and her communication skills widens.  She is getting frustrated.   Sarah needs her voice.

Not long ago, the best course would have been to obtain a communication device which cost between eight and ten thousand dollars.  Those are really pretty cool devices.  They speak for a child.  She uses her hands to navigate pictures, telling the device what to say.  Now, an iPad does the same thing.  We want to get an iPad for Sarah.

It is not as simple as buying an iPad.  The app is expensive, you need a case and to make it easier to use, and there are specific screen covers for adapted use.  Still it is much less expensive than the older technology, and it is more portable.  The iPad would be a dedicated device.  As much fun as it would be to get an iPad for playing (or for me!) every therapist I have spoken with stresses that for this to be an effective communication device, it has to be dedicated.  If has to be Sarah's, and she cannot use it for games-no matter how fun or educational.  If she thinks it is a toy, she will not want to put in the effort to make the thing work for her.

We have tried to resist asking for money.  Everyone has bills and budgets are tight.  We cannot complain much.  We have excellent insurance, which has paid for almost everything.  In spite of that, our budget is blown.  Hospital incidentals, like food and parking, add up quickly.  We have a roof over our heads and food on the table.  We cannot complain, but we cannot buy an iPad either.

Please help us get a voice for Sarah!

(donate button deleted.--THANK YOU!!!)


  1. My son has a school IPAD that he brings home every day. It's amazing the stuff they can do with the apps on there! It'd be awesome if you had so many donations that you could get for play and one for communicating! I'll keep my fingers crossed that Sarah gets what she needs.

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