Wednesday, September 26, 2012

 Home from the Hospital!

We came home from Phoenix Children's hospital today after Whitney had a Melody Valve placed in her pulmonary valve.  Hospital stays are never fun, however, Whitney's personality continued to make people smile.  Whitney taught every nurse that worked with her a little sign language.  The wonderful hospital team brought her a countless number of dog toys, as well as dolls, movies and an iPad to play with.  She would actually sign, "I like the hospital, the hospital is fun".  Eventually her blood pressure would have to be taken, or blood would have to be drawn and she would sign, "I don't like the hospital.  I hurt, and I want to go home".  She signed several times, "I want to go home and jump on the trampoline with Nick".  She still can't walk because her leg is so sore, but she was thinking about jumping on the trampoline.  The most difficult part of our stay for me was when she signed, "Where was Gabby when she died?  (She knew the answer was "in the hospital")  She continued, "am I going to die?"  Then she signed, "I'm scared because Gabby died at Hospital.  Whitney's at hospital"  My heart ached with concern for her fears.  I also was amazed that she could communicate all of this to me.  I explained to Whitney that she was not going to die and was going home to be with her family, but she had a look of distrust in her eye.  I knew she wouldn't believe my words until she actually got to go home.  When we finally arrived home tonight, as expected, she was so happy.  She asked me what my favorite part of the hospital was.  After I answered, she signed, "My favorite (was the) two hospital dogs".  My heart is filled with gratitude for all of her wonderful Doctors,  nurses and especially Raulie and Tiger.  This picture was the smile that Raulie brought right after she had been so upset.  Love those dogs!

Saturday, September 22, 2012

Saturday is a Special Day

Today one of Whitney's previous classroom aids came to watch Whitney at cheer practice.  Before I put Whitney to bed she signed, "Whitney is happy when she sees Mary.  What made Mom happy when she was a little kid?"  Thanks Mary, for making Whitney happy today.  

Later,  I took a 20 minute nap while Jeff watched Whitney.  Amazing what a girl can do in 20 minutes.  She had colored blue feet on about 100 3x5 cards, and strategically placed them throughout our hallway.  She even taped one on my bedroom door.  I asked her what all of that was and she said that it was Blues clues walking.  Whitney used to cry whenever we would work on handwriting or even coloring as she has difficulty with her fine motor skills.  I think I will leave them out all weekend. They make me smile.

Wednesday, September 19, 2012

Witty Whitney

Our amazing daughter Whitney has CHARGE syndrome.  Despite countless surgeries and many disabilities, she seems to go through life making people smile (even when it is often embarrassing).  This blog is a collection of "Whitney stories", devoted to bringing her amazing personality to anyone who needs to smile.

This is only the Beginning

This year we started Whitney in a competitive cheer team for special needs.  She loves to go each Saturday.  After she completes a cheer or does a pose she signs, “I’m a big girl”.  They each have a teen helper to keep them on task and show them what to do.  Last week she grabbed the end of her helper’s long braid and tickled both of her own armpits with it.  This is how Whitney makes people smile and sometimes causes embarrassment to Jeff and I.

We have a lovely home teacher from church.  He is always sweet to Whitney.  He lets her wear his tie whenever he comes over and he is always friendly to her.  She unfortunately loves his bald head.  He graciously bends his head down and lets her rub it as he know that she can’t help herself.  Last week in church she went up to say hello to his family as she does each Sunday.  She then climbs up and rubs his head as he is sitting in church.  Again, we are mortified but she brings a smile to everyone around us.

She can communicate, now what?

For many years we have worked tirelessly at helping Whitney to communicate.  She was my inspiration in going back to school to work on my BA in Speech.  She now signs fluently and also uses an Augmentative communication device when we don’t know what she is signing.  She wants to be a friend to everyone, but doesn’t know how, so, she tries to ask endless questions to everyone to learn about what they like.  She has gotten very creative in her questions, even if she uses the same questions with everyone.   She has gone from “do you have a dog” and “do you have a trampoline”, to “What book do you not like?”  As well as “what T.V. show do you not like?”  Previously at cheerleading, the person in charge was talking to me about the uniform.  Whitney kept interrupting by signing over and over, “What color of hair did you have when you were a little girl?”  The blond woman clearly was uncomfortable answering her question and so tried to ignore her, but Whitney would not stop.  She finally rolled her eyes and told her brown.  Whitney was satisfied.

Last year Whitney was watching T.V. when her brother Nick asked me to pump up a basketball for him.  I went out into the garage and pumped up the ball.  When I came in the house, Whitney was not watching T.V.  I checked the entire house 3 times, then the back yard and the pool.  She was no-where.  My heart was pounding.  I sent her brother Austin on a bike in one direction, and I hopped in the car and drove in the other.  Two blocks away I saw a group of people gathered around Whitney.  I jumped out of the car and ran to hug her.  One stern woman that held her would not let me have her back before she gave me the third degree.  I signed to Whitney, “what where you doing?”  “Where were you going?”  She signed, “too Wal-Mart to buy a Buzz Light year”.  As humiliated as I felt, and mortified that I had not kept her safe that day, I had to smile at her creative idea and determination in accomplishing her goal.

Whitney is fascinated with people who have different skin color.  One of her recent questions was, “do you have a mom?  What color is she?”  In Fry’s there is a lovely African American man at the checkout.  In Gilbert, AZ, that is a rare sight to see.  Of course Whitney notices and all the way out the door she is signing over and over, “black man, black man, black man”!  Thank goodness most people don’t know sign language.  Another inappropriate behavior is that she loves to touch people’s double chins.  We have talked to her about not doing this.  She can tell us that it is thumbs down behavior to do this, and that it can make people sad.  However, when it comes down to it, she cannot resist touching peoples double chins.   To our dismay, she loves to wiggle the flab under everyone’s arms.  In addition, she loves large bellies.  She wants to pat everyone’s bellies.  The larger the belly, the more fascinated she becomes with touching it.  Her inappropriate behavior does not make me smile, but her innocence sure does.  Only if we could all love our differences as much as Whitney does.

Yesterday Whitney and I went to watch Austin’s basketball game.  She kept trying to ask me the same questions over and over.  I finally said to her that it was time for her to play with her toys.  I said, “I like to watch basketball.”  Whitney signed, “Whitney doesn’t like to watch basketball.  Why?  Because it’s boring.” I again have to smile that she can tell me so much when for so many years...she could not.

Last year Whitney started 3rd grade at our neighborhood school, Val Vista Lakes Elementary.  On her first day, I went in at lunch to see how she was doing.  She was in the nurses office with two new friends who also happen to have trachs.  Whitney was crying and I asked her what was wrong.  She signed with emotion, "I love my new trach friends".  I then realized how alone Whitney had been feeling, being the only person that she knew with a trach.  She finally had friends like her.  

Last summer, Whitney best friend Gabby past away.  She has been fascinated with death since then.   She asked a friend of mine if they have a dog.  My friend said that her dog died last month.  Whitney signs to her excitedly, “Your dog lives with Gabby and Jesus”.  How can you not smile at her innocent understanding of death?  Recently she asked her new nurse if she has a Mom and a Dad.  She told Whitney that her mom recently had died.  Now Whitney asks me on a daily basis if I’m going to die.  Whenever I sign to her that I’m tired, she will sign, “Are you going to die”?  As concerned as I am about her worried about her Mom dying I can’t help but smile when she asks me such an innocent and odd question.

Potty training has been Whitney’s nemesis.  She is nine.  She can read.  She does math.  Still wears diapers.  We have potty trained off and on for 5 years.  She has picked out several potties, and potty rings that fit on the big potty.  We have tried charts, bribes, and spoken to many specialists on the matter.  A year ago, we took a break when it was obvious that the problem was anxiety.  Recently however, Whitney asked if we could buy her a pink potty.  So, a few days ago, we went to Target and she picked out the Princess potty.  She even sat on it a few times!   We have it in the great room, where she usually spends her time.  She is more determined to learn how to do this than she ever has been, so we are hopeful that this is her final potty.  Tonight, Nick was standing in front of the potty talking to me.  Quick as a flash, Whitney grabbed Nick’s shorts and de-pantsed him.  Nick grabbed his shorts, yanked them up and yelled, “Thumbs down Whitney, thumbs down”.  Whitney then dropped her pants, and sat on the potty.   It was so nice of her to want to share her new potty with Nick.  We are still waiting for some “successful” sitting.