C~Monkey's Journey

Monkey's dad, J & I were married on 7/24/04 after 4 LONG years of dating. He was an Occupational Therapist & I was a Pediatric RN.

Shortly after our 1 year anniversary we found out that we were expecting our first baby. I had a relatively easy pregnancy: exhaustion during the first trimester but no morning sickness. At 18 weeks we found out we were having a boy. J & I were thrilled that everything looked okay with our baby. The pregnancy stayed pretty easy other than the fact that I was HUGE & uncomfortable and dealing with a lot of swelling while trying to work 12 hour night shifts on my feet.

On April 20, 2006 I was admitted to the hospital for an induction.

At 8:08 pm our sweet little (lol) 8 pound 15 ounce C-Monkey was born with a head full of dark hair. We were over the moon!

He continued to grow into a healthy infant. The only health problems we encountered was some mild flattening on the back of his head because he liked to keep his head turned to the right. Turned out he had torticollis which required some visits with a Physical Therapist and a helmet at 4 months old.

We were devastated that he would have to wear the helmet. We didn't want anything to be wrong with him! Funny how now I think back and think that was a test, and boy did we fail it miserably. Three days after Monkey's first Christmas, I had him on the changing table that evening when I noticed him having these strange little movements that looked like a startle reflex. Only thing though were his eyes were deviated off to the side and I couldn't get him out of it. I yelled out for J. He saw what C-Monkey was doing and said he had seen him doing it the night before. I was heartbroken. I knew what was going on in my RN brain, but my Mommy heart didn't want to believe it. C-Monkey was having seizures. We were quick enough to think to video the episode to show to the Dr. It was the longest stretch of time in my life. And life hasn't been the same since. The next day we went to the Pediatrician's office, and he didn't even want to see my video. I think he knew what it was too. We were sent to a near-by hospital for an EEG. I laid in that hospital bed with my 8 month old and cried my eyes out through the whole test. By the end of the day, Dr. Peds called and said the EEG was abnormal and we would need to be admitted to the hospital for further testing and to be seen by a neurologist. On December 30, 2006 we heard the words that no parent should ever have to hear: "Infantile Spasms. Your child will probably never walk or talk and will have significant cognitive delays. He will need daily injections of a medicine that might work. One of you will have to quit your job because he can't go to daycare or he could die if he gets sick." I'm sure that more was said but those are the ones imprinted into my brain forever. All that I could muster up in my brain was the little girl that i had taken care of in the hospital shortly before C was born that had IS. She died. I think J & I cried for atleast 24 hours straight. We learned how to do the meds. We learned how to do everything technical, everything seizure related. The one thing no one bothered to talk to us about was how to cope with all that had just been dumped on us. No one took into consideration that in a span of less than 48 hours, we had gone from parents of a totally healthy child into the lonely, scary world of seizures and special needs.

Since that time we have tried the following meds with no success: ACTH, Klonopin, Depakote, Keppra, Lamictal (twice), Topamax, Zonegran, Vigabatrin, Banzel, Phenobarbital. We've also tried the Ketogenic diet for a year. He also had a VNS implanted in 2010. With all of the treatments we would see some reduction for maybe a week or 2, but I can honestly say that I don't think a single day has passed that he hasn't had a multitude of seizures.

Developmentally: We referred him to the local Early intervention program (that NONE of our health care providers had even told us about) about 5 months after diagnosis. He began receiving OT, Speech, and educational therapies less than a month later. At 19 months old he began walking on his own. What a Christmas miracle that was! The week of his 2nd birthday he was diagnosed with Autism. We pretty much knew he would be since he had poor social skills, no speech, and stimmed frequently throughout the day. Still, the sting was still there. We enrolled him in a local infant toddler program for children with special needs where he received all of his therapies in August 2008. This was so important for him and us. He was able to be around other kids and we met other supportive families that could understand what we were going through. He is still non-verbal, but we are constantly working on ways to help him communicate. He has been through the exceptional children's preschool through our local system at a separate setting school where he is now at for Kindergarten. At school he receives OT, PT, and Speech. He is very loved by everyone that encounters him professionally and is well know for his hugs.

Extracurricular stuff: C-monkey has played baseball for a couple of seasons in a program for kids with SN. He has also taken horse therapy lessons for over a year. He likes his particular toys and doesn't often stray from his favorites to try anything new. He loves to eat! A few of his favorites are: pizza, doughnuts, pancakes, and yogurt raisins. He does NOT like ice cream or anything frozen, side dishes before his main course, & raw apples. He loves to ride in the car and listen to music. We adopted our cocker spaniel Rudy from someone that was moving. He is often what I imagine having another child would feel like...hectic! He has been a good addition to our crazy house though.

He has been through a lot and we've been through a lot with him, but I can't imagine life without him. He is always my sunshine on a cloudy day. There is not a better feeling in the world than the way he lights up with a smile and gives me the biggest hug when he sees me. We hope you learn from C-Monkey's journey, and we're glad you are here with us!