Alana Coleman

A little bit About me in the beginning!

I am the youngest of 4 girls & My mom Had a normal Pregnancy. I was full term & I weighed 9 lb. 3 oz. I was 21 inches long and very healthy. I had even started to smile at 2 weeks & hold my head up & turn it from side to side. But at about 4-5 weeks old I started to make jerking motions. So, we went to the doctor and they sent me to a different doctor & they did all kinds of test including an EEG, Blood Work, Spinal Tap, MRI, & they looked in my eyes.They told my mom & dad I was having Seizures, and the kind I was having were Infantile Spasms. By this time I was 2 months old, This is when they Diagnosed me with Aicardi Syndrome. When I started having seizures I did not smile anymore and could no longer hold my head up.

I was put on ACTH ( I got all of the side effects from this drug. It made me feel very YUCKY). I was on this for about 14 weeks. Then we tried Phenobarbital, & Depakote. We did this for about 1 1/2 yrs. Then I was weaned off of both of them, one at a time. As soon as I was off I began to Smile Again, & responded when someone would talk to me! During this time I could not sit & it was very hard for me to hold my head up. Then My Parents & my doctor put me in a Rehab Hospital (my mom stayed with me all the time) where I got intensive therapy for 6 weeks. When I got out I could hold my head up very well & sit unsupported for a few minutes on my own!

Current Medicines & Seizure Control: I Am on Topamax & Lamitical. I Have A VNS. I got it in Sept. 2001. Since my VNS was implanted my seizures are very mild. Most of the time they don’t last very long. On my worst day they may last 5-10 minutes, and I may have 5-7 Clusters A day. But on my GOOD DAY My seizures are very mild and last for only 1-2 minutes, and I may only have one seizure a day!!! Or Even what we call a ONE jerker, were I only jerk one time! Most of the time using the Magnet lessens my seizure so they are not very hard or long. It has even stopped my seizure .

THINGS I CAN DO: I do have some Delays, but each day I get stronger & learn to do more things as each day passes. I can roll from my stomach to my back & I can roll on to my side. I don’t like rolling over to my stomach, but sometimes I do. I can sit pretty straight in my chair. I was able to sit unsupported for about 3 minutes until I had a big growth spurt. But, I am working really hard to get my sitting back. I can grasp things with my hands. My right is better than my left. I am non-verbal but I communicate with lots of sounds, most of them are happy sounds! But when there is a problem I DO FUSS & I get my way most of the time.

I Have a Stander & I can stay in it for up to 30 min. several times a day. I also like to weight bear with someone holding me up & letting my feet hit the floor while I try to stand.

THERAPIES: I receive PT, OT and SP in My Preschool that I go to & I also get PT, OT, pool therapy, and vision therapy in an out-patient clinic 2 times a week.

FAVORITE THINGS: When the weather is warm I love to be outdoors. I just got a swing that my mom puts outside for me & I just LOVE It!!, I love being talked to. I like to play with toys that light up & play music, but my most favorite thing is curling ribbon that is off of a Present!

LEAST FAVORITE THINGS: I don’t like to get my hair combed, my teeth brushed, or being on my stomach. I don’t like for anyone to touch my face. I also don’t like anything cold in my mouth; I like everything warmed up.

SCHOOL: I attend a Special Needs Preschool for 2 1/2 hours a day, 4 days a week. I like it very much. My class is very small in number There are only me and 2 little boys in my class. I have my own special person who helps take care of me while I am at school. We have a teacher, a teachers aid, & a Grandma. There are more adults there than students! So as you can tell we get a lot of attention! At school I work really hard doing therapy & other activities. I like being in the stander & the swing. They make me work to get in the swing though. Since the weather is warm, they take me outside in my stander to the playground so I can be around the other HeadStart kids. I am the center of attention when I am out there! All of the other kids love to talk to me, & I love it too.

GOALS: I’m working towards are sitting better & standing. Also on activating a switch trying to learn cause & effect stuff. Trying different textures of food & Also drinking from a sippy cup.

MY FAMILY: My Dad’s name is Paul. He is training to be an Electrician At the Paper Mill where he works.
Mom, her name is Patti, takes care of me & everyone else.She is always busy with one of us! My 3 sisters are Amber, almost 14, Amy almost 11 & Alyson almost 6. They seem to give me the best therapy of all! I really like watching them play & they play & talk to me all the time.They give me plenty of hugs & kisses too. My ‘Gammies’ Is also my Respite Provider & is doing a great Job. My Godmother, Bev, comes over every evening & spends a lot of time with me. All of my other relatives & Friends give me lots of love!

SPECIAL MOMENTS: When I was 3, Make A Wish Foundation treated me & my family to a once in a lifetime vacation to Disney World. We stayed at Give Kids The World. It was simply Great. We Were Treated Very Special.

Outside of my Delays & Seizures, I Am very Healthy, Happy and have a lot of Love to give!

TAKE CARE & GOD BLESS

Alana, Paul & Patti Coleman & Family