Sunday, July 22, 2012

It was the best of times, it was the worst of times…

That pretty much sums up our week.

The biggest frog Lizzy has ever seen!  How I love to watch the girls discover the world through their senses.

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Practicing our jumping.  Special Olympics, how we wish you would take five year olds!  Just a few more years.  She loves sports!  Lizzy had to get in on the action.  We went outside to continue – look how high she is.  I’m thinking track and field in a few years!

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Alex’s first time swinging outside!

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Joy and Patches…she adores that dog!  So proud of Alex – he is starting to figure out how to hold his bottle.  Between 4 and 6 months the books say, yeah, Alex!!  Right on track!  (adjusted age, of course!)

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Blowing in ST – everyone had to try

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Alex, Alex, Alex!                                Bella wanted to hold him!    So cute in the bumbo!

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Sammi made this video of Jason and Alex “driving” while listening to music.

More “May I” practice                           Joy wants to play too!

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Grandma, Grandpa, Aunt Angie, and cousins Jordan and Trevor drove into town on Tuesday night!!!  

Grandma and Becca                             Jason showing off his back yard to his Dad

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Couldn’t believe this – not only did Bella go to total strangers – she was giving her special “I love you” touch to Jordan.  Everyone got to meet Alex.  Cuddles and love all around.

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Mandy spent the night on Tuesday – the girls had so much fun!  They stayed up till 1AM.  I made Mandy hold Alex (she isn’t the biggest baby lover in the world).  Ha!

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And then Wednesday came…and my world changed forever.

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When we were leaving the NICU, Alex had an eye exam.  They had actually been doing them every two weeks since he was born.  When you are that early, you are at risk for something called ROP – retina of prematurity, basically the little veins in the eyes hemorrhage and do lots of damage.  Well, Alex did really well in this department.  He only had a Stage 1 little tiny bleed in one eye (pretty incredible all things considered).  When we left the ophthalmologist said that his retinas were finally mature (another yeah!).  I was instructed to follow up with an ophthalmologist in Houston in six months.  They told me that he or she would just follow up on the ROP and dismiss us from any further care for ROP.  So I went to this appointment with this expectation – “his eyes are mature, have a great life!”  Therefore, the doctor examining my boy, looking at his MRIs, then turning to me and saying, “Ms. Turpin, Alex has cortical visual impairment and optical nerve atrophy.” wasn’t on my radar.  What?  English please?  This is from an email I sent this week to explain.

There are three parts to vision - the eyes, the optic nerve, and the brain that processes everything.  His eyes are great - a little bit nearsighted from his early birth, but nothing to correct.  His nerve has atrophied - that will never improve
His brain has been damaged  - he can't process well the signals he receives.
Right now he can perceive light and dark and can probably see some shapes.
The brain may re-wire itself, but his vision will never be normal.
He is blind.  They don't use that word anymore she told me - visual impairment now.  But for all intents and purposes my son is blind.

So, not the visit I expected.  But it explains so much.  It explains the lack of eye contact – it’s not trust, it’s not premature muscles, it’s because he’s blind.  It explains the side to side movements he sometimes makes with his head (common for kids with CVI – cortical visual impairment), it explains why he isn’t reaching for toys (he can’t see them), it explains a lot.  I cried and cried.  My dreams, my hopes, my goals for my son have to be adjusted. 

The kids have been awesome!  They took it in stride.  Of course, some regret was expressed, but they have immediately jumped to the next level.  Everyone talks to him, explains things to him, and hands him things.  We immediately started digesting books and the internet to learn about CVI and how best to help Alex.  Becca has spent hours learning about braille and the “blind child” signs for our street, and so many other things. I’m so grateful for my kids.  They are awesome!

A video of Becca and Alex.  She had just gotten home from her history class and I had just told her.

We started putting toys in his hands, and magically he jumped to the developmental milestone of bringing toys to his mouth.  Way to go Alex!

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Thursday was the beginning of Jason’s vacation, so he treated us all to this great breakfast!  I spent the day learning, reading, and talking to therapists, plus all the normal Thursday stuff (PT, OT, harp lessons, activity days).  Jason spent the day with his Dad.  Jason misses his parents so much.  He cherishes any time he can spend with them.

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That afternoon, the Turpins aged 12 and up, all went to the temple.  What an incredible experience for Sandi and Gary to have all their children and all their grandchildren over twelve in the temple.  Incredible!  Glad that Jason, Becca, and Sammi got to go!

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That night we played Rummikub – Jessi was delighted.  It wasn’t “May I?” and Rummikub is her favorite game!                                                             Hey Bell!

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Sammi’s famous hot chocolate             Little Didi – he totally turned himself around in the nap nanny.  Very cool because little babies that are blind sometimes don’t move around a lot.

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Therapy shots – so cute to watch these two

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Our first attempts at making opportunities for Alex to have meaningful interactions with toys.  So often blind children have to wait for toys to be given to them or for noise to start.  They develop learned helplessness.  Not our son.  Jason and I were delighted that Alex learned so quickly how to start the music by kicking the giraffe.

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Becca and Joy with the little violin.  If Becca has anything to do with it, Joy will play in orchestra when she is older!  Bella’s PT and I figured out that if we turn Bella around in her walker, she can’t lean as much and she walks much better!

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New sure steps for Joy – one happy girl!  She was so proud!

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Friday I was done processing.  We were going to do something for Alex!  With help from our wonderful OT and the internet, I learned that little ones do well learning about spatial relations and their own body awareness from something called a Little Room.  So we designed one and Jason and his Dad built one.  It was hot out in that garage!  But I am so grateful it got done!  I was feeling like Colonel Brandon in Sense and Sensibility  when he said, “Give me an occupation, Miss Dashwood, or I shall run mad!”  I needed to DO something.  I can’t fix this.  Alex is blind.  But I can help him be the best he can be and we will.

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Our third trip to Home Depot                   Our Frame

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Meanwhile with Grandma and Grandpa here, there was a lot of performing music for them!july 22 138july 22 129

That night we played “May I?” with Grandma and Grandpa – very fun!  Very late that night we ran to Wal-Mart to pick up some things for the Little Room.

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The Little Room: The Little Room consists of a metal frame (in our case PVC pipe) supporting three side panels with various textures, a Plexiglas ceiling, and two play bars from which a variety of objects (everyday objects or toys) are suspended. This gives the child the opportunity to experience the properties of objects, to compare different objects, and try out different things to do with the object on his own without adults interpreting that experience for him. Since the objects are stable, it allows the child to repeat his actions with an object as many times as he needs to, at one to two-second intervals, without dropping and losing it. The immediate repetition enables the child to store the information gained from the experiences in his memory.july 22 226

The Little Room sits on a resonance board.

Resonance Board: The resonance board is a thin plywood panel carefully designed to vibrate to every movement a child makes while lying on it. It enhances the effectiveness of the Little Room, but can also be used alone to encourage play and movement.

Little things catch me off guard and bring me to near tears about Alex, but we will get through.  Alex’s body isn’t who he is.   He is a child of God in a less than perfect body.  And we love him!

Be we reminded that a perfect body is not required to achieve one’s divine destiny. In fact, some of the sweetest spirits are housed in frail or imperfect bodies. Great spiritual strength is often developed by people with physical challenges, precisely because they are so challenged.

Elder Nelson

Saturday was the Turpin Family Reunion – but that gets a post of it’s own!

3 comments:

Junior said...

Alex is beautiful, what a sweet little guy. Loved seeing all the picture of him and the rest of your amazing family. Junior is considered to have CVI and at one point we were told he was blind(many years ago,I think he was 1). He is still considered to have CVI but his vision has improved a huge amount and is usable to the point where he uses eye gaze and symbols for communication and loves to watch his shows.
Lots of hugs and prayers.

jellyfishgrammie said...

Thanks so much for posting this! Your family is doing such wonderful work in raising these special children to reach their potential and beyond. Do you have the book "I Chose You"? I have a copy for you.--- Linda Stolle

Kristin said...

Thank you for posting this! You guys are an amazing family. I love how you all pulled together this week to learn about CVI and build that Little Room. Thanks for being an inspiration to all of us