Wednesday, May 26, 2010

And continues...

My last post was about how it all started. And now I will continue on.

That night I was on edge after she fell asleep. Since I thought it was all related to breathing issues, I thought maybe she would stop breathing in the middle of the night. So I turned the baby monitor as loud as it could go so I could actually hear her every breath...what an incredibly sweet sound.

And then it happened again. That same sound she made during the first "episode". So I ran into her room and peeked into her crib. She was doing the exact same movements. I picked her up and she fell back asleep on my shoulder.

The following morning, she did almost the exact same thing. Except this time, she was sitting in her highchair and her arms came in instead of flying out. So I called the pediatrician and we got in to see her that evening. I showed her the videotape of the episode from earlier that day and she said she would call the neurologist's office in the morning.

I honestly thought it was nothing. I was so optimistic. She had been completely healthy up to this point. She was hitting the milestones. See...I was an optimistic person in life before all this. I always felt that things had a way of working out. But, this...what happened in the next few days...has forever changed me.

We got in to see the neurologist the next evening (by now it is Tuesday). She had a few more episodes by then. I gave him the whole history and showed him the videotape. He told us to come back first thing tomorrow morning for an EEG.

Still, no panic. None. Still optimistic. Everything was going to be just fine.

Well, moments after the EEG, our world came crashing down. I could not breathe. I could not stand. I could not stop crying. I just wanted to die. We were told that our sweet, precious, little baby girl has Infantile Spasms. That we were to immediately take her to the hospital in which they were going to run a series of test. We were told that she had a 70% chance of being mentally retarded. We were told that we (Brandon and I) would have to give our daughter daily injections, in which, a side effect is...DEATH. All this information in a matter of minutes.

We pulled ourselves together just enough to drive to the hospital. She had another EEG, blood drawn (the beginning of genetic testing), spinal tap, MRI and began the ACTH treatment.

Because of the side effects of ACTH, she went from looking like this...

May 13, 2006 (just 2 days after her first injection)

May 15, 2006

To looking like this...

July 4, 2006 (In the middle of weaning ACTH)

These are hard pictures to look at. Brings back too many painful memories (or I should say nightmares). ACTH did not work. So we began the journey of working our way through a long list of anti-epileptic drugs and alternative treatments that failed, one after another. In which we were told that with each failed medication, our chances for seizure freedom was slim, if not impossible. And that there was nothing else we could do for our daughter. That there will be a time that the seizures will overcome her body and she will start regressing.

October 23, 2006 (About 3 months after ACTH. Back to looking like her old self.)

The only DOCTOR that ever gave us the option for surgery was Dr. Chugani. I say "doctor" because it was another mom (a mom whose son had surgery) that told us about Dr. Chugani. Because a MAJORITY of neurologist do not believe that those with Infantile Spasms are surgical candidates. Because their EEGs are too chaotic. With Infantile Spasms, there is CONSTANT electrical discharges occurring. Can you imagine your brain never being at peace?!?! But Dr. Chugani along with Dr. Sood and Dr. Asano (the surgical team) see beyond that. They see the potential these children have. They take the risk.

So one year ago today (May 26, 2009), the surgical process began. Grids were placed to monitor the seizure activity and map the areas to be removed. I am reliving it...VIVIDLY. I think I am finally letting those emotions surface. Because I went numb. I went into survival mode. I was 32 weeks pregnant. I had a 16 month old baby girl back home (about 575 miles away).

It is hard for me to deal with these emotions now. Because I want to repress them. I do not want to think about them. Surgery was a nightmare miracle (as Danielle puts it). It has brought so much pain and joy in my life. I am so grateful for it but I hate (and it eats me up inside) that she had to go through that to get where she is today.

And now there is another little girl who is about to enter this world...the brain surgery world. Please keep her in your thoughts and prayers.

Friday, May 07, 2010

So the story begins...

I have been flooded with raw emotions lately. So much has happened in the month of May over the years. So much is happening now. And it is consuming me. Flashbacks of the past are haunting me. Flashbacks of seizures and surgeries...all the pain and suffering she has been through over the years. I cannot stop thinking about it. I am struggling. I am fighting back the tears. I am overwhelmed with guilt. I want to go back in time and fight harder (for so many different things on so many different levels) because I have learned from my mistakes. But, with everything in life, it is not until you live through it that you know better. But because it was my child suffering, I cannot help but blame myself.

I VIVIDLY remember Sophie's first cluster of jackknife seizures. It was May 7, 2006.

We went to visit my sister and her family at their condo on the lake only a few hours away from where we lived. It was Sunday and we were getting ready to leave in a few hours. Erin and I along with Sophie stayed behind while the rest of the bunch went fishing on the boat docks. Sophie had a little bit of a stuffy nose. As I laid her on the ground, she did some odd "movements". Her arms went out and her eyes slightly rolled back. She made this odd noise through her nose. I thought it was strange. And then she did it again. And again. And again. Maybe 8 times.

I picked her up and she fell asleep on my shoulder.I looked over at my sister and asked her what she thought. She did not know what to make of it. I do not know why the following words came out of my mouth. I have never seen or knew of a person who had a seizure. But I asked her if she thought it was a seizure.

Initially, I blew it off. I became preoccupied with packing things up. But once we got home, I could not stop thinking about it. So I called the pediatrician's after hour service. They said that she was probably having a hard time breathing since she was stuffy. So that was that.