Kaylee's story - Part 2

So we decided to never take Kaylee back to her pediatrician again. But the damage had been done. Kaylee was showing some early signs of autism at 6 months. She was a happy baby, but a little too happy to be by herself. I kept waiting for her to be attached to me. I wanted her to need me. I quit my part-time job so thinking that was the reason why she didn't care whether I was around or not.

Kaylee was mouthing things extensively. She could sit for hours chewing on objects. I thought that was just a "teething" thing, but after having two more babies, I realize that Kaylee's excessive chewing was a red flag I missed.

But, Kaylee was doing well in other developmental areas. She was waving "bye", initiating kisses, reading books, and starting to say words like "ba" for bottle.


She was with us. When I look at her pictures from that time of her life, she looks like she is there with us.

Proof that Kaylee regressed:

Kaylee doing "so big!" at her 1st Birthday Party,

she never did that again...

I remember one of the last times I "saw" Kaylee before her autism took hold. Dan and I were going for a walk on a summer evening, and I had Kaylee on my shoulders and she took my face in her hands, turned it to hers and she kissed me.

But at 13 months, when Kaylee started to walk, she started to slip out of our hands. She never waved again, her few words disappeared. She receded further into herself and began to actually eat her books (the corners were all chewed down!), walk on her tip toes, and line up her toys in the straightest lines I had ever seen. She didn't look in my eyes and smile anymore. The unexplainable sparkle in her eyes was gone.

I kept waiting for the words...yearning to hear her say "Mama!" and hug me and kiss me. "What is wrong with me?" I thought to myself. "Why doesn't my child love me like other kids? Why doesn't she care when I walk into the room?" Never once did autism come to my mind as the problem.

A Happy Halloween!

Kaylee and Joey went trick-or-treating today...and for the first time, Kaylee actually understood what was going on and had a great time! It was so nice to do a "normal" thing and be like other people. Last year, Kaylee would cry and scream because we kept on going to other people's houses...Was not fun.

But this year, it was a simple joy I never knew I would have, and Kaylee could do it! She didn't cry and she said "trick or treat" and "thank you"!

Joey did great, too! He can't say "trick or treat" yet, but he didn't want to let go of his pumpkin filled with candy...He walked around with his heavy pumpkin and wouldn't let it go to get into his car seat. So much fun!

And here is a cute picture of Kaylee, I loved it so much I had to share it.

Kaylee's story - Part 1

I have been thinking often about Kaylee's development lately, and how different her beginning is from my other two children. I didn't see the signs in Kaylee because I wasn't experienced yet. There were signs though...

When Kaylee was born almost three and a half years ago, she was born healthy and happy. My pregnancy and labor were uneventful. When she was born she barely cried! She looked surprised at the new world around her. When I first held her in my arms I cried, she was so quiet and perfect. She was content. She nursed with ease. Her Apgar score was 9 out of 10. She was born healthy.

The next day, I was unaware that she had received a Hepatitis B Vaccination and she was inconsolable. She wouldn't nurse anymore, all she did was cry and cry. I was afraid to leave the hospital because I didn't know what to do! When I had asked the lactation consultant why my daughter wouldn't nurse anymore, she asked "did you have an epidural?", and I answered yes and she said to me in a condescending voice, "ohhhh...well that explains it. Her nervous system and sucking reflex are compromised because of your drugs still in her system. Give it a few days and she will be fine."

Soon thereafter, Kaylee developed a rash all over her body for no reason, starting from her back. The doctor told me it was "baby acne", but today, I know that wasn't what was wrong at all. Baby acne lasts for weeks, not 24 hours! They were hives! Kaylee was having an immune reaction to her vaccination, but I never suspected anything.

It took days for Kaylee to eat again, we would do everything to wake her up but she wouldn't. She never wanted to eat. I was scared, especially being a first time mom. Eventually she started to wake up and eat. I never dreamed that she may have had a reaction to her shot in the hospital.

Two months later, her pediatrician gave me an informational sheet from the CDC on Kaylee's immunizations, telling me "don't do any research of your own, just read these pamphlets and make your decision based on those." Well I listened to her, I understood where she was coming from. I didn't want to scare myself. I mean, I had shots before and I was OK.

So I went through with it. Kaylee received 3 shots, one of those that had 3 included in it. Basically, she had 5 at one time. Kaylee screamed and cried and I gave her Tylenol and she slept for 20 hours straight. Why didn't I see it then? That's when she started looking at spinning fans. Today I understand this was a "self-stimulatory" behavior.

Mommy and Kaylee, right after

receiving her shots, we had no

idea what was to come...soon after

she became very sick.

At 4 and 6 months, Kaylee's reactions to her vaccines were much much worse. She screamed uncontrollably for hours and had a fever of 104 degrees or more. She laid in my arms with a blank stare in her eyes. I was afraid she would die. She didn't even have the energy to cry anymore. I called her doctor and asked her "why is this happening and what should I do? She had her shots only a few hours ago and she was OK then!"

Her doctor said to me in an annoyed tone of voice, "I bet she just has an earache. Give her some Tylenol and let her cry it out." I listened to her doctor when I should have taken her to the hospital. I didn't listen to my instincts.

Some doctor. We never went back again. By some way, I just couldn't do it anymore. By God's grace, Kaylee hasn't had a vaccine since. I don't know what would have happened if she would have gone back, I think we could have lost her forever.