Wednesday, February 07, 2007

Ben’s 100 Things

  1. Ben has a rare genetic disorder.
  2. We knew something might be “wrong” at about 18 weeks gestation.
  3. We thought it was Downs Syndrome.
  4. Ben was born 8 weeks early.
  5. He lived his first 3 months in a Neo-Natal Intensive Care Unit at a Catholic women’s hospital.
  6. He had a “guardian angel” named Sister Theresa.
  7. Ben almost died from RSV when he was 3-weeks old.
  8. He went without oxygen for almost 45 minutes.
  9. This was our first miraculous experience with Ben.
  10. He was kept paralyzed for almost a week afterward to save his life.
  11. It worked.
  12. Ben had an extra digit on the outside of each pinky finger, which is a common anomaly of his syndrome (they were removed).
  13. He also has a nubbin just like Chandler Bing of "Friends" (for those that don’t know it’s an extra nipple).
  14. Also Ben has a double butt-crack that isn’t because of the syndrome – he inherited it from one of his parents.
  15. It wasn’t me.
  16. Ben received a tracheostomy when he was about 2 months old.
  17. That means he breathes through a hole in his neck.
  18. Ben came home on January 3, 2000, one day after his sister’s 3rd birthday.
  19. He slept in a toy wagon for many months next to Mom in our bedroom.
  20. We found out that Ben “coded” 9 times in his NICU stay.
  21. Ben’s family knows more about medical terms than they want to.
  22. From the very beginning Ben’s best friend has been his sister.
  23. Ben’s had a nurse with him almost everyday (other than weekends) since he came home.
  24. He was almost 9 months old before we found out his genetic condition.
  25. We met with his geneticist July 4th weekend to find out he had Tetrasomy 12p.
  26. Also known as Pallister Killian Syndrome (PKS).
  27. There were less than 100 known cases worldwide when we were told this.
  28. We were devastated after given the known literature.
  29. Mom, Dad, and Jessie said, “screw that” Ben’s gonna go far beyond what the literature told us.
  30. A month later he went swimming with Jessie and Dad for the first time.
  31. Ben was already interacting with loved ones and showing quite a bit of intelligence.
  32. Ben has hydrocephalus (shunt put in at 6 months).
  33. Ben had a cleft palette (closed at 18 months).
  34. We’ve lost count of the hospital visits due to surgeries and respiratory issues.
  35. At two years of age Ben had more surgery to correct some problems in his esophagus.
  36. His trache was removed.
  37. He did well for about 10 days.
  38. He ended up back in the hospital where we almost lost him again to RSV.
  39. One again he miraculously survived.
  40. About two months later we noticed Ben making strange “clicking” noises.
  41. It took us about a week before we discovered he had a different sound for each of us.
  42. Ben once again exhibited intelligence beyond what was expected because he developed his own way of communication with his family using those clicks.
  43. Ben has played in the ocean surf.
  44. He has been to Disney World and loved every minute of it.
  45. Ben has ridden a horse.
  46. Ben loves music.
  47. So much so that it’s difficult for me to play guitar for him because he tries to take it from me.
  48. One of his favorite toys is an electronic keyboard.
  49. Ben has been fishing.
  50. He enjoys playing in the sand at the beach.
  51. Ben has been to several baseball games.
  52. And many football games.
  53. And of course all of the pre-game tailgates that go along with those.
  54. Ben, Mom, and Dad have visited our state capital several times to lobby for budget money on behalf of other special needs children.
  55. He has met many state Senators and our Governor.
  56. Ben enjoys watching a variety of sports but his favorites are basketball and auto-racing.
  57. He has seen two movies at the theater: Finding Nemo and Cars.
  58. He’s been in the hospital for four of his 15 Christmases.
  59. Ben began painting as a form of occupational therapy.
  60. It’s now turned into regular activity and it entertains him tremendously.
  61. Ben is fed through a “g-tube” directly into his stomach.
  62. Although he has tasted a variety of foods and enjoys them he still has difficulty swallowing.
  63. Ben has very lax ligaments.
  64. That means many of his bones easily dislocate but immediately pop back into to place.
  65. After fifteen years of this it still grosses us out more than anything else about him.
  66. Yes, you can actually here it “pop” when it happens.
  67. He is very sensitive to sunlight so he wears sunglasses most of the time he is away from the house.
  68. We think he looks cool.
  69. He even says the word “cool” when we put them on.
  70. Ben loves school!
  71. Ben is very camera shy.
  72. Just like several of his classmates.
  73. We don’t know why.
  74. Ben sleeps with a stuffed ostrich named "Ozzie."
  75. His Me-Ma bought it for him in London,
  76. Ozzie (named after the former Black Sabbath singer) looks like he's passed out in a  New York alley after a hard night of drinking.
  77. Ben’s favorite TV program is Teenage Mutant Ninja Turtles.
  78. Using a Passey-Muir valve Ben can actually talk to us.
  79. He is now strong enough to use his voice without the PMV.
  80. The motif we used to decorate Ben’s room was Field of Dreams.
  81. This was long before we knew he was special.
  82. I did a full wall-size mural for each of my children.
  83. Ben’s is a replica of the baseball field built in a corn pasture.
  84. Ben’s original room is now my office.
  85. My office is now Ben's bedroom.
  86. Kevin Costner comes to Greenville every May to play golf (he no longer does this...bald-headed bitch).
  87. We want him to sign a baseball for Ben some day.
  88. Ben has a baseball signed by Hank Aaron.
  89. Ben's Uncle Cameron has given him some awesome collectibles of famous Minnesota Vikings that now grace his wall.
  90. My boy has the most endearing smile of any child in the world.
  91. I don’t mean to brag but it’s the honest-to-God’s truth.
  92. When Ben was born his hair had a spiral pattern on the back of his head that looked like a bulls-eye.
  93. It took about three years for his hair to grow in enough to make it look natural.
  94. Ben had a baby Black Snake sound asleep under his fanny when Mom took him out of his stroller after an afternoon in our yard.
  95. Ben thought it was funny.
  96. Mom did not.
  97. Our boy still makes us smile every day because he smiles first - let that be another lesson learned from a a kid you might think "retarded."
  98. The future for Ben is still unknown.
  99. We think it is limitless.


moosh in indy. said...

Ben's shirt says "central park squirrel" or the squirrel's shirt says that? If it's not Ben's I highly suggest you make one, or maybe one that says "Greenville Black Snake Sitter".

kimmyk said...

OMG @ the black snake!! I would have pee'd right there!!

I'm sorry to hear of all the hospital trips and sickness in Ben's life. But they say what doesn't kill you makes you stronger? Or something like that. He's a tough little guy.

Now what kind of music gets Ben moving? Would you explain to me how the Passy Muir works? I think that's pretty cool.

This was a great thing this 100. I learned soo much about him and your family. I love that he slept in a wagon-how cool and fun would that be to be wheeled around. Probably helped with putting him to sleep.

Her Bad Mother said...

Three cheers for #100. Three BIG cheers.

Sandi said...

Oh I love reading these 100 things! Especially about Ben.. what a sweet picture at the top.

I would have died about the snake too.. but I can just see Ben laughing it up:)

Tater and Tot said...

What a wonderful list! Thanks for sharing them!

Ben & Bennie said...

Casey - the squirrel is wearing the shirt so we might have to go with The Black Snake theme for Ben.

KimmyK - Ben loves all kinds of music except The Wiggles. Immediate seizure activity (from me, not him).
Also the valve has a mesh-like material that allows him to breath in air but won't let it back out. It therefore is forced out over his vocal cords through his mouth and nose.

HBM - So good having you stop by! That has been our motto since day 1...okay maybe it was day 2.

Sandi - just you wait. We have THREE black snake stories to be told this evening. Fun stuff...except for my wife.

T&T - Your blog was one of the first ones I read regularly. I'm so ashamed for losing touch. I'll have to get back over there and catch up!

The Curmudgeon said...

It's a nice list -- just one question, Bennie, re: Nos. 46 & 47.

Does Ben try to take your guitar because he wants to play it, too... or because he loves music?

(Ducking now.)

Ben & Bennie said...

The Cur just made me laugh out loud. Gotta go find some Windex...

Kim said...

Oh my, how I loved reading your list. Hi, I am Kim, a friend of Casey. Thank you for sharing your story with us. Ben seems like a great kid. I will be a regular visitor from now on!

Kyla said...

Ben is one amazing little dude. And #100 is definitely the most important.

helen said...

What a cutie-pie!

Franco said...

Hello, my name is Franco and I am the father of Pier Carlo a beautiful baby who suffers from the same syndrome of Ben. If you see photos of Pier Carlo notaries what you look like you.
How can we contact?