Jaisha's Story

My little angel had quite a rough start in this big old world. When Jaisha was 9 days old I was rocking her when I noticed the color in her face fade to a pale gray. I immediately rushed her to the pediatricians office. That day began a roller coster of adventures (which I can call them now).

When the physician came into the room she immediately took Jaisha out of my arms and said she was having a seizure, she was rushed down to the emergency room (looking back good thing her doctors office was in a hospital).

Once in the ER the doctor did a spinal tap, when she stuck that huge needle in Jaisha's back she didn't even cry she was lifeless laying there. The doctor said we were going to have to Life Flight her to Primary Children's Hospital in Salt Lake City if she could not stabilize her, however she luckily did and she was rushed via ambulance instead.

That night was one of the worst yet inspirational days of my life. On the ride up to the hospital I kept thinking to myself "oh a seizure, no big deal they can fix that" well I could not have been more wrong.

Once checked in, I called a friend of mine in our LDS ward and asked if someone could come up and give Jaisha a blessing for health. About 5 minutes after I hung up the telephone two LDS Missionaries came into the room to see if anyone needed a blessing. You don't have to be super religious or even be of the LDS faith to think that is a little coincidental.

However, things got worse for my little angel, she was losing her grasp on life that night, she could not hold her oxygen saturation's and had to be placed on life support in a medically induced coma.

Test after test came back negative, the spinal tap was normal, the cat scan normal, the heart tests normal. The second day there I got my answer after the MRI. The doctor told me my daughter had encephalitis of unknown ideology which is a fancy term for inflammation in the brain. They explained to me that when the brain gets an infection it causes inflammation which in turn creates small holes in your brain tissue and leaves residual damage. They told me 1/3 of her brain was inflamed and most likely she would be so severely mentally handicapped she would need to have to reside in a residential treatment center for care.

That night I prayed harder than I ever have in my entire life, I prayed it was me instead I asked God why. I have to say looking back I had this strange sense of calm which I refused to accept because I was so scared but God was answering my prayers he was telling me it was all right and to have blind faith.

Jaisha had several blessings from family and friends over the course of our hospital stay and it seemed after each one she got better and better and finally a week into her coma the doctors decided they would attempt to take her out of the coma and off life support to see if she could hold her own, and you know what she did.

On the 10th day of our hospital stay another MRI was preformed and I had this strange feeling the doctors were going to come out and tell me it was a miracle all of the damage / inflammation was gone. Ok, so I was not so lucky but then again yes I was, they came back to tell me all inflammation was gone except for a small amount in her frontal lobes. I was excited and saddened at the same time.

The doctors could not tell me her long term prognosis instead they told me they have never seen a case like Jaisha's and I would tell them how she is doing.

Well that was almost 7 years ago, and I admit to this day writing that brought back a flood of emotion and made it feel like yesterday. I can still see myself and feel the same emotions I felt sitting next to her in ICU not leaving that room for anything or anyone.

Over the next several years Jaisha progressed normally meeting all of her milestones with no residual issues, she crawled, walked talked and did everything she was supposed too.

Just when I was putting it all behind me and closing that chapter of life another one opened. In July 2007 by a fluke Jaisha was diagnosed with Asperger's by a friend who is a psychologist. I was devastated at the news but decided to read up on the disorder. It hit me smack in the face, it answered so many questions. Everything I read was my daughter, I always thought she was a little bit different but I just thought she was unique and was not worried about it.

Jaisha has trouble socially, she is obsessive compulsive and is a little young for her age, yet she has a memory of an elephant.

Instead of being burdened by the diagnosis I decided to educate myself and other and become and advocate for her. I have learned I will not let Autism define who she is as an individual, instead I will embrace each characteristic and realize those are the things that make her so unique and exceptional!

I am fully committed to Autism Awareness and advocating for my sweet daughter! With that being said I am pleading for donations to her Walk Now for Autism team / Jaunt for Jaisha!

If you are able or willing to donate please follow the link below to make your tax deductible dontation. Please help me help my little girl.
http://www.walknowforautism.org/utah/jauntforjaisha


Wednesday, August 13, 2008

Support Group

I would like to start a Asperger's / Autism support group, I am sure with our experiences we can help one another in similar situations. Give advice on what you have tried and have someone to lean on when things get tough.
If you know anyone who is interested please email me. Thanks

1 comment:

Happy in Holland said...

I just came across your blog, and I really enjoyed reading it. My son has autism, and we were a part of the Walk last year. It was awesome. I just wanted to let you know of a blog that has just been started for families of Special Needs kids. It is BRAND NEW, and we are still trying to get the word out and traffic in. Come check it out at www.thruthetulips.blogspot.com . We'd love you to share your insights as a mom of a special needs child. By the way, your daughter is beautiful!