S: A Brachial Plexus Journal
FC: Some people call me Ben My mommy calls me her SUPERHERO
1: A note from Amy | A Brachial Plexus Journal | This book is dedicated to all of those sweet babies and parents that continue to give our family strength. May God bless you and keep you always,.....just perfect. Know that each of you listed and so many more have touched my heart and gave me hope. I write this book for all children with a BPI injury because at one time we were alone. For Skylee,Kelsey, Daniel, Maddie, Jadon, Megan, and my Superhero.....Ben. To Doctor Allan Peljovich and your talents. I love each of you and hope you enjoy seeing your beautiful faces. Each of you are a gift to me. A blessing from above. Love, Iron Man's Mommy Amy
2: I am three years old. God made me perfect. During a difficult birth, I was injured. Because I was hurt, my right arm did not work. They tell me I have a brachial plexus injury. The doctors call this spinal cord injury, Erb's Palsy. I want to show you some of my pictures and tell you some stories of my journey. Can you keep a secret? Some people call me Ben. My mommy calls me her superhero. Superhero? Yep, thats me. I am handsome, strong, courageous and I am a fighter. I will beat this injury. with the help of God- and the gift he gave my surgeons, therapist, and stubborn parents I will show you my secret superhero powers.
3: One week old
5: My Baby Pictures | When I was born, my right arm did not work. I could wiggle my fingers and turn my wrist but nothing else.My mom made me do exercises with every diaper change. At a two weeks old, I started therapy. I didn't mind it. I was so little. No therapist in Tennessee that we met had ever had an Erb's Palsy patient. I was the first for all my therapist and the smallest. They told mom that if it was not permanent that I would move my arm by three months of age, I didn't. We saw many Doctors and traveled to many hospitals. My favorite hospital was called Children's Healthcare of Atlanta and there I would find a Brachial Plexus Clinic. Where all the babies were like me. There I met my Doctor- I call him Dr. Allan....cause Peljovich is hard to say!
6: AGE 2 | Before Surgery
7: AGE 3 | After my Surgery
8: This is Dr. Allan Peljovicn.. I call him Dr. Allan...... because Peljovich is to hard to say!
9: God gives people many different gifts. (or superpowers) Dr . Allan's gift was meant to be used to help children like me. He shared his gifts with me through surgery. Surgery is a scary word sometimes, but surgery is a gift. One of my special gifts is to educate parents . To give people knowledge of what a brachial plexus injury is and how to make sure it doesn't happen to any other children.
10: Time for Surgery! Today is Oct 15, 2010. Today I have my first surgery ever. They call this surgery a Hoffer Transplant. I call it a Tendon Transfer. It simply means they take tendons from one area and move it to my tendons that don't work. It was early in the morning when we got to the hospital. The nurses were so nice. They wrote their names on a board for me and mommy changed me into a small gown. They brought in a big color stick so I could choose what color my cast would be. Then they gave me some sleepy medicine to drink. I got to go pick a special toy and I laid and watched tv until I started getting sleepy. Then they brought in a big gown for Daddy and a funny hat. Shortly after, Daddy took me to a room called the OR. Daddy stayed with me until I fell asleep. They took mommy and daddy to a room to wait on me. Then ......SURGERY! They gave my mommy and daddy a timer and every hour they called to the OR and let my parents know how I was doing. My surgery only took an hour and a half! Dr. Peljovich came and told my mom and dad that everything went just perfect. When I woke from surgery they took me to my mom and dad and I was sleepy, and a little nervous to wake up in that big cast. Mommy sang to me and rocked me to sleep. An hour later I was on my way home. It was a little uncomfortable in my car seat. Remember to bring some extra pillows to make it easier to ride. When I got back to the hotel I slept a lot. That night I went out for pizza! I was already back to myself. Dressing up like my favorite superhero......IRON MAN! We stayed near the hospital for a couple days and then we went home. I couldn't take a bath while I wore my big cast. I had to wear really big shirts with the arm cut off. I never hurt, just itched. Mommy kept lotion to help me with the itching.
11: My favorite stuffed animal Precious stayed very close to me. I watched SpongeBob before surgery. | They let me pick a special toy to take to surgery out of a toy cabinet. I picked a dinosaur. It roared!
12: Home from Surgery | Baths: we sit on the edge of the kitchen sink and sponge off. To wash my hair I just laid on the counter with a sprayer for my hair- | Dressing: Shirts aren't hard- Just buy 2-3 sizes bigger and cut the sleeves off- We bought garanimals at Wal-Mart because there just $3.00.. | Jackets are much harder to find. Mom got hand-me-downs and cut the sleeve off. Velcro's great , too. My aunt made my jackets out of fleece. They look like hospital shirts and tied up the sides. I called them my warm shirts. | Itching:Keep a hair dryer handy for itching. Not too hot! Blow it on the cast to stop the itch! | Helpful Hints | Eating: Feed me 5 Or 6 small meals a day. This cast is tight!
13: Halloween | Well as you know my surgery was just a couple weeks from Halloween---the big ole' cast didn't stop me from dressing up! No sir, my mom simply cut neck off of a turtleneck and and a sleeve. Save that sleeve because she just slips it back over the casted arm! We cut fingers out of gloves and slipped it over my casted hand. My suit was made of velcro around my neck and at my waist. Cape attached! It ain't easy being BATMAN!
14: After six weeks of wearing my red cast, it was time to take it off! The Nurse took a saw that was hooked up to a vacuum and sawed my cast in half! Don't worry, it didn't hurt one bit. It was loud--But I was a big boy. The noise didn't scare me! When they took my cast off I touch the top of my head for the first time in my life. After it was off, I got to pick the new color from the color stick for my brace. I picked red again, (For Iron Man, of course) To make my brace Daddy helped the nurse wrap me in cotton. Then they covered it in colored plaster. They use a little water to make the plaster hard. Next, they cut it off again! They gave my mommy ace bandages so that when I wore my cast to sleep in she just slipped it on and wrapped it up. Pretty cool, huh! I had to wear this brace at night for 8 weeks. I had to do lots of exercises during the day to build some strong muscles back. | Post Op- Making My Brace
15: Look at me I can raise my arm! Wow! | What color would you pick?
16: They are more than friends. They are my Brachial Plexus Family.....
17: My Special Friends! | Skylee, Daniel, Jadon, Kelsey, Megan, Maddie
18: Hi, my name is Skylee Burget and I am 20 mos old. I enjoy dancing and the outdoors. Elmo and Dora are my favorite cartoons! I was born with a BPI and went through 8 months of PT, lots of home exercises with my mom and dad and many trips to the pediatric neurologists. I was released from the doctors a year ago and expected to make a full recovery! The average person will not know I even had an injury. I am a lucky little girl and God has blessed me with 95% recovery as of today April 25, 2011.
21: Hi my name is Daniel Alan Ross. I was born July 25th, 2008. I am a very outgoing little boy; my mommy says I may grow up to be a comedian. My favorite things to do are: paint, play with my monster trucks, play outside, and watch movies. I have came a long way since the doctors told my mommy I have Erb's Palsy when I was born.. I get therapy twice a month and I have had a nerve transplant surgery just four days after my first birthday. Since then, I have been able to do things that the doctors thought I would never do. I am a very determined and strong willed kid! Everyday I accomplish more and more, and hopefully one day I will be able to do everything someone else can do if not BETTER!
22: Hi! My name is Jadon. I am 2 years old! I love to play outside! I love my ride on toys the most and slides are fun, too! I love cars and choo choo trains also. I talk a lot about my daddy's car. I have a big sister named Shelby, and a big brother, Jacob. They think I am really funny. When my sissy tells me what to do I give her the sign for quiet. I think its pretty funny but mommy says its not nice. I also love my D's (doggies). I have two of them. They let me pet them all the time and my Dakota even lets me ride him! They are so soft and fuzzy! | A
23: Jadon's Journey
24: My name is Kelsey Pullen. I am 2 1/2 years old. My favorite tv shows are Dora the Explorer and Go Diego Go. I like to play outside when the weather is nice. I like to play with my Uncle Zach. He is 6 years old. My right arm was hurt when I was born and I had to have surgery. Don't worry, because its a lot better now. I had to wear a big pink cast and now I have to do exercises everyday. I don't like them but I know that they will help my arm to be strong! | Kelsey
27: Hi my name is Megan, and I am 2. I love going to the park and love to play with friends. I may have a BPI, but that doesn't stop me from playing with friends. I don't lift my lefty as far as my right and have some trouble turning my hand all the way, but I find ways to make it work! I will soon learn to ride my bike. I can't wait for summer. My mom thinks I will be great! | Megan
29: Maddie | Hi my name is Madison and I am 3 years old. I suffered a Right arm BPI at birth. I have had 5 surgeries so far, on my arm and my hip too because it was broken when I was born. I go to Dr. Kozin in Philadelphia, and he is helping my arm to get better. I use it more everyday! I love him! My mommy says I can do anything, just like any other kid, even with my special arm. I love Minnie and Mickey Mouse. I love horses and love to go on pony rides. I love to swim and I love the beach. I live near the beach so I get to go every week. Hope you enjoy these pictures of me!
30: Today: I am doing great! Just got back from swimming at the pool and did the wheelbarrow walk for the first time ever! My recovery is amazing!
31: Madison has learned to swim and is recovering beautifully! Her surgeries have paid off! Please keep her in your prayers for further checkups! | Jadon is now eating with his righty! He had recovered from his tendon transfer and has discovered the magic powers of his right hand! He plans to meet with Ben this summer to have a play date! | Kelsey has a had a fun filled summer 2011. Her recovery is complete and she is working on strength. She is just a typical little girl! She is and will always be "my cutie pie"! | Skylee bug is recovering fully with NO SURGERY! We are so happy for her! Go Skylee! | Daniel is currently in his big blue cast! He is doing wonderful! Soon he will be working on strength exercises and touching his head, eating, pulling on his ear and scratching his nose! These things are like taking a first step for us mommies! | Megan is just too cute! She is very excited this year because she is expecting a new sibling! Yay! Currently she has had no surgeries! | Notes from Amy