Sean and Arthrogryposis

Heel Cord Release - May 2006

Heel Cord Release -  September 2006

Heel Cord Release, Knee Release, Femur Shortening - August 2008 

The doctor made a small incision in the back of my legs just above my ankles, known as heel cord tenotomy, heel cord release or Achilles tendon release.  It is usually done under general anesthesia, but I got to come home the same day.

This procedure allowed my feet to come back up, since they were in the drop position.  After this procedure, I had to wear a cast for about 8 weeks each time. 

At the age of 2, I still could not walk.  Even though I got around just fine by knee walking and crawling, I really wanted to walk like my little sister was starting to.  Dr. Jay Albright (Orlando Regional Healthcare System, ORMC) performed 3 surgeries at one time on both my legs so that I could get started on this "walking journey"

First, he released my knees.  He made a smal incision in the back of my knees, to cut and release some of the tendons on the lower part of my legs.  This would allow me to extend my legs fully and most of all stand up and eventually walk.  Because my legs were not fully streched, my knees had a lot of "junk: built up on the front.  This "junk" acted like extra padding and allowed me to knee walk everywhere, even on concrete without feeling pain.

Also, since my legs would not fully stretch, my skin would not allow for the extra knee stretch after surgery.  To take care of this, the doctor had to cut of a piece of my femur.  (both legs)  This gave me the extra skin I needed for my leg to fully stretch out.  To join my femur where it was cut, he put in a plate and some screws which will come off in about 1 year.

The last thing Dr. Albright did was another heel cord release, to finish bringing up my feet.  I was in the hospital for 36 hours, and on morphine for pain for 24.  After that it was cold turkey!  I did really well, and just needed Tylenol for a fever which I developed.  I would not talk to anyone, and wanted to be left alone, but no major pain!

Dr. Albright put on a soft cast, which will stay on for 2 weeks.  The soft casts will come off on August 25th, along with all my stitches.  I will have to go back in the hospital and go under general anesthesia.  I will also have my soft casts replaced by hard ones.  In the mean time, I will have to figure out how to get around!!!!!!

Right after my surgery.  A few hours later I wanted juice.

I got to come home 36 hours after my surgery, with just a prescription for Tylenol w/ codeine.  I'm a tough guy, and did not need it.

Day 2 after surgery: (Wednesday) - Ok, so I came home last night and I was up all night!!!! "Mom" (grandma) and I watched toons all night!  No pain meds needed though, but I did start to run a low grade fever.  On Wednesday (surgery was Monday) I laid around all day on "Moms' Bed".  They just kept my legs up to prevent swelling.........."I think I am going to get bored"!

Day 3 after surgery: (I'm still laying around, and I refuse to eat!!!) I will only drink Gatorade............I get a spongebath on  my wagon, and they have moved a crib mattress to the living room, so I can watch tv and not be in the room all day......."will I ever feel better"? I ate a cheese stick and ended up throwing up!!!! Nothing wants to stay in my stomach!

Day 4 after surgery: (Friday) - There is hope!!!!! I got a Diego bed table which can go on my mattress or bed.  I also went to Target on my wagon (people really do stare a lot!!) and got a a pillow that I can lean on when I sit up.  This is really cool!!!! My girlfriend Emma sent me some crayons, coloring book, etc and I can now sit up and color!!!  Everyone says I look soooo much better!!!! Oh by the way, I ate a whole bowl of mac and cheese! and then had some cashews and goldfish!..........oh, I think I will be back to my normal self by the weekend!  If I can just figure out how to move in my casts!!

Day 5 after surgery: (Saturday) - Mommy and Aunt Steph kept me entertained in the morning.  Titi (my little sister, her name is really Breanna, but I like Titi, or Princess Bea) is starting to walk and she likes to climb on my mattress when it's in the living room floor and touch my feet!!!!! Get her away!  I don't think it will hurt me, but just in case, I don't want her near me.  On Friday my mommy had a wheelchair delivered to my house.  (I call it Jenn's chair, like my AMC friend Jenn)  Papa (grandpa), "Mom" and I went to the mall and took my chair.  It was fun to ride around!  They want to get me out of the house everyday so that I don't just lie around all day. My appetite is slowly coming back.  As you can see in this picture, I spend a lot of time just bumming around, but the worst part is I have gone back to my pacifier! I hear there is a secret plan to take it away from me as soon as possible!

  I still can't figure out how to move my legs, and have decided that everyone should feel as miserable as I do!

Day 6 after surgery (Sunday) - I still do not want to move my legs.  I spent the morning watching tv, and in the afternoon we went out!  I like my wheelchair, it gets me out of bed, and I can sit and be a part of the world.  Tomorrow will be one week since my surgery, and I do feel better.  I've noticed they are not being as nice to me.  Now when I whine, they don't jump anymore!  Next Monday I go in for my next procedure, where they will remove my stitches under general anesthesia and straighten my feet again.  I also go back into casts, hard casts this time, for 8 more weeks!!!!!!!!  Oh by the way, to make things more exciting, the adults are worried about Fay, which is supposed to hit Florida Tuesday night into Wednesday morning.  They say that if the power goes out (there are a lot of trees where we live and all the wiring is above ground????????)I will be very hot because of my casts.  They better make sure I can still watch SpongeBob Square Pants!!! 

This is me and Princess Bea, she loves me alot, and ALWAYS wants to be on top of me, with me or touching me!! There is such thing as toooooo much of a good thing, just KEEP HER AWAY FROM MY FEET!

Day 10 after surgery: I woke up this morning and the first thing I said was" ouch all gone" as I pointed to my casts!!!!! Yeah!!!!!

My uncle Ian playing Wii with me.

Monday August 25th:  2 weeks after surgery!!! I made it thru!l!!!!  Today my stitches came out.  I was put under general anesthesia again (I'm a tough lil guy, but I fight the doctors!) so.......nite nite it was!  When I woke up (I have to tell you that story later) I had blue fiberglass casts, and Dr. Albreight told "Mom" (grandma) and Mommy that my bones had healed well, and that I looked much better than what they expected.  So...it looks like I may only have my hard casts ("blue legs") for 3 weeks!

Oh, the story about waking up.......well, you see....they keep you in the hospital for at least a couple of hours after general anesthesia.....I beat the record, 15 minutes flat!  I woke up screaming, tried to pull my IV out, and told everyone to go away.  So, they decided that I should go away instead! I slept a few hours, and then decided I wanted food and to go out.  I think I am going to be OK!  By the way, the doctor says I WILL BE WALKING SOON! Thank you for all of your prayers.....they were heard!

October 1, 2008 -  A couple of weeks have gone by since I got my "blue legs" off, and I still don't do all the things I used to do before surgery.  I am scared of knee walking and crawling.  I still have some discomfort, but I am starting to get the hang of things.  My scars are big but they have healed well.  There are still a few spots that open up, but I am pretty good about not touching them.  I am back in my AFO's, the shoes I used to wear before, and my feet and legs are much straighter.  I know I am only two years old, but even I can tell the difference.  I look at my feet everyday, and just stare at them.  I know something is different and I can feel the difference, but I guess at my age it is hard to explain.

Everyday is a new day, and my family is excited about the future.  I just get around scooting like I did with my blue legs, but Get Ready World, cause I will be running around Very Soon!

October 16 was the day we had all been waiting for!  I got up, leaned on the couch and stood up for the first time since my surgery!!!! My little sister is also starting to take some steps, so I DO NOT WANT TO BE LEFT BEHIND! I am now also crawling and just having so much more fun.

This is a picture of the first time I stood up after surgery!  Go Sean!

Now, let me explain some of the songs on this playlist:

1. Bob - OBVIOUS!!!!! MY FAVORITE - ACCORDING TO ME, COOLEST DUDE ON EARTH!!!!

Mamma Mia - Mom likes this song and one day I heard it, and I decided I like it too, so......now I sing it!!!!

Low Rider - I discovered George Lopez while up all night after surgery, and I like his theme song.  I even own a car that sings this song

the other ones are BOB songs, and the Backyardigans....pretty cool tv show on Nickelodeon.  As I call them.....Amazing!