“A hundred years from now it will not matter what my bank account was, the sort of house I lived in or the car that I drove, but the world may be different because I was important in the life of a child.”

¨ I have physical therapy, we work on my gross motor skills.  I give my therapist a lot of attitude during therapy because she makes me use my muscles and I would rather just cuddle.  No matter how much I complain she still makes me work so sometimes I just give in and show her what I can do.

¨ I have occupational therapy, we work on my fine motor skills.  We are working on playing with switch toys and finding a way for me to communicate my wants and needs to mommy and daddy.

¨ I have am waiting for a speech therapist to work with, mom says they are very busy and we’ll have to wait a while. My old speech therapist taught me how to do the Elvis look :o)

¨ I have had Hippo therapy and loved it!  Mom says that we will see if we can find a program here in AZ so I can ride again.  I really enjoy riding and have impressed my therapist with my accomplishments on the horse. 

¨ I used to have Tippy Toes class once a week.  I got to sing, dance and exercise with other precious kids like me.  I love the interaction and the music.  My favorite things are the blanket ride and the parachute.  Mom says we will look for anther run class for me here.

¨ I see a pediatric GI Dr.  She likes to look inside my tummy and make sure everything is ok.  She also makes sure my feedings are going well and that my reflux stays under control. 

¨ I have a special pediatric dentist.  So far he says my teeth look great!  He brushes them for me and then sends me home with a new toothbrush.

¨ Every six months I see a pediatric eye doctor.  The first visit I had my eyes were pretty bad and they said I would eventually need glasses but I didn’t want them so I worked really hard on focusing and by my last appointment my eyes had improved sooo much they said I no longer needed glasses!

¨ I see my pediatrician regularly, she keeps a pretty good eye on me and makes sure I’m growing well, eating enough and staying healthy.

¨ I see a pediatric neurologist regularly, he has the very challenging job of trying to control my seizures.  This has been a long and continuous battle but he never gives up on me. 

¨ I was in a early intervention program in MT and will be again in AZ as soon as mom gets in gear and gets all the paperwork done for me.

¨ Other than that I have had 2 MRI’s, I have EEG’s once in a while (which I don’t like), and occasional lab appointments to check my medication levels.

 

 

 

 

 

WHAT YOU SHOULD KNOW ABOUT MY CHILD

Remember that he is, first of all, my child.
Let me see him smiling in his sleep and let me think about how handsome he is
and not about how delayed that smile was in coming.
Help me not lose sight of my son in the shadow of his limitations
I know that you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is
and in following through at home with things that are important.
Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of having a vacation, sometimes physically,
sometimes just emotionally, for a day, a week, a month, without your judging me.
I will be there for him when you are long gone.
I love my child with an intensity that you can only imagine.
If on a given day I am tired or cross with him, listen to me,
lighten my burden, but do not judge me.
Celebrate with me, rejoice in who he is and who he will become
but forgive me if from time to time I shed a tear for who he might have been.

Author Unknown

My Care

      Me in Physical therapy.

Me in Hippo Therapy

   Me in Occupational Therapy

“A child will never exceed a low expectation”

Me in Speech therapy

Pictures from my class doing my two favorite things, the blanket ride and the parachute!

I would like to thank everyone involved in my ongoing care, although mommy and daddy are primarily responsible for my care each one of you play a huge role in my health and development!!

 

 

Seizure medications I have tried

Dilantin

Phenobarbital

ACTH

Topamax

Lamictal

Felbamate

Zonegran

Klonopin

Keppra

Depakote

 

Other medications/supplements I have tried

Prilosec

Melatonin

Ambrotose

Ambrotose AO

Sport

Phyte-Aloe

Soy lecithin