Recent Photos

If they could see him now!

So, Zackary is 2 1/2 years old and a full blown toddler. Here are pictures to show how far he has come!

October 2007: Zack learns to crawl
December 31, 2007: Zack takes first steps!
December 2007: We get to wean from Topamax (the last drug)
March 2008: Zack turns 2 and we are med free
April 2008: Most recent EEG....no seizure activity while on no meds!


Zackary's favorite things: Daddy! Coloring, looking at books, blocks, therapy sessions (I never EVER thought that would happen), eating, riding on tractors, going up and down the slide at the park (by himself), going to Grandmas, singing songs, sign language (he knows about 20 signs)...and more!

A mom's faith

Zackary Raymond is now 2 and half years old. He has come such a long way. Many physicians told us not to expect too much. If I could see their faces. I remember asking God....what did we do wrong? why us? why do we deserve this? But, I remember the day I gave it all up. That day driving down to the VEEG in September 2006...almost 2 years ago to this day I talked to God. I said that "I don't need any answers anymore. I am giving this to you and putting Zackary and our family into your hands. I need to be there for my son and give him 150%. I don't care why, I don't care if he is "special" because of course he is special...you gave him to us. I put may faith and trust in you Lord...to watch over Zackary...give me the strength to take care of him, treat him, and love him." From that day on that is what I pray for every night....along with all of the other moms, dads, babies, siblings, families of IS children. We still do not know what Zackary's outcome will be for life. I don't worry too much about that anymore (of course a little drug called Lexapro helps with that!) All I know is this: I have an AMAZING little boy. His smile lights up a room. We get to witness a miracle every single day. When he says a new word I want to cry, when he walked, I sobbed right along with Sue (his PT). It is at this point God has given me my answer...I was given Zack to bring me closer to God. For this I am truly blessed.

Zack's first Christmas

Zackary was officially off of ACTH by December 1, 2006. Almost 3 months after the nightmare began. At this point Zack was still on Phenobarbital 7ml in the am, noon, and pm; and Topamax. Both were liquid form and went into his formula. He had learned to sit up again, was smiling more and more, making baby sounds, sleeping fairly well and focusing more on objects. His play became more intentional but he showed no signs of large gross motor skills and hated being placed on his tummy. Here is Zack at his first Christmas. We truly had something to celebrate.

Zack on ACTH

So, we were sent home expecting to get horrible side effects and expecting the worst. I am pleased to say that other than a couple of high blood pressure readings and a puffy face he did very well. He was excitable and laughed and smiled all the time. He slept well and of course...ate like a piggy. We continued to notice spasms for a while. They became less frequent and by about 3 weeks into treatment stopped. His follow up EEG two weeks later confirmed no more hypsarrhythmia. They called Dr. Zelaya immediately...he was quite surprised to say the least. We kept on with the weaning schedule.

Zack's ACTH Schedule

First 5 days....40 Units/day
Then for 7 days....40 Units every other day
Then for 7 days....35 Units every other day
Then for 7 days....30 Units every other day
You get the picture...all the way down to 5 Units

We were done 11/27/2006

ACTH....financial crisis

So, we get the script for ACTH....didn't think much about it. The nurses called it into our pharmacy (we needed the headstart as it is not kept on pharmacy shelves) so that it would be ready for our pick up upon discharge. We leave the hospital and head there. Kevin walks back out to the car with two tiny bottles and says...here it is...liquid gold. At that time (fall 2006) ACTH was at the bargain price of $1600.00 per vial so our cost was just over $3000.00. We put it on our MasterCard. In fact, MasterCard called us the next day...asking if it was really us who put that charge on it. They felt sorry for us. (not sorry enough to write it off though). Thank God I have a great set of in-laws who loaned us the cash so that we wouldn't have high interest. However, with the cost now I highly doubt they could've done that. So, we get the meds and head home with our injection supplies. We meet the home health nurse...Nancy. She was fabulous (even called Walgreens and yelled b/c they sent us home with 30 Unit syringes....he needed 40 Units so we had to stick him twice) morons! So, another trip to town to pick up bigger syringes. She is nice and gives him the first injection...she said I could learn next time. Again...fabulous woman.

VEEG Day September 29, 2006

Zackary was 6 months old. We were admitted to the Children's Hospital of Peoria where it was determined almost immediately he had IS. They first tried a mega dose B-6. However, that was a long shot and it did not work. The next course of action was ACTH. We were give then side effects, how to inject, our home health care schedule, etc. Here is Zack during his 27 hour VEEG.

September 8, 2006 Repeat EEG

So, we take Zack for another EEG. Actually, my mom went with Kevin as I could not be there. They called me when they got him hooked up and called me when it was over. They didn't even get out of Peoria when Kevin got a call on his cell telling them that his EEG was VERY abnormal and to get back to the clinic ASAP. I immediately left work to get to Peoria (45 minutes away) to see his EEG myself. Very chaotic....classic hyyps but no clinical seizures...we never even saw as much as an odd eye blink. We had to see the other neuro as Dr. Zelaya was out on vacation. He decided to up Zack's phenobarbital big time. That meant a sleepy, drugged up baby. Here is a sample EEG of a hyyps.

Summer 2006

Here is Zackary at 3 months old. He has a great smile like is daddy. He loved to "pose" for the camera. At this point he was only on phenobarbital for seizure control. No IS or any other signs/symptoms had occured yet.

June 9, 2006 Repeat MRI day

This would mark Zack's second MRI. Because you have to remain still for this test (a baby obviously wouldn't) he had to be sedated. The thought of this still makes my skin crawl. He was allowed NO food for 10 hours pre procedure (poor guy)...take my food and I scream and I don't have a baby's metabolism. He was checked in and given an IV and then we were told he would be put on a breathing machine (precautionary). Zacks MRI took about one hour when they came to get us. He was fine but we could hear him screaming for food. I sure couldn't blame him. I only wish I had more than Similac to put in that bottle. He was such a little trooper. He never fussed once. After watching him for about 2 hours he was free to go home. The results were good...no change. That basically means that the old damage was still there of course but that there was no new damage either. So good...we keep doing what we are doing at this point.

Early May 2006

Speed up to Zackary's 3 month status. He is not developing as quickly as hoped but is still doing remarkably well. He is tracking objects, tolerating his tummy in small amounts and eating and gaining weight. His EEG went smoothly (minus that we had to keep an infant up until midnight and then let him sleep until 4am and then wake him up and keep him awake in the car for a one hour car ride just to let him fall asleep during the test). It still showed some seizure activity but very mild. Good, we thought....we'll keep doing what we are doing.

April 3, 2006 Baby Zack is Going Home

After spending his first couple weeks in the NICU, Zackary's doctors decided he could be given his medicine at home. Talk about being nervous! His seizures had come under control and he was scheduled for a follow up VEEG for May 9, 2006. Until then it was, take him home, see how he develops, give him his phenobarbital and call us if you think anything is wrong. Okay....I put them on speed dial! Other parents with babies who have had seizures understand....doesn't every motion an infant make look like a seizure???? Even more so when you are overly paranoid. Anywho....we get his meds, get him dressed and I remember crying because we didn't even get his official hospital portrait taken. I remember the first night home with him. Kevin and I slept in shifts...that lasted all of one night! It was amazing but I remember at first begin so depressed and sad about what had happened to this child. But eventually a calm came over and Kevin was so awesome. He taught me how to make up Zack's bottles with the medicine because I had been absent during this session in the NICU (more on that later). Everyday just seemed to get easier and more comfortable.

March 23, 2006

Zackary was born via emergency c-section March 23, 2006 after a long labor. He was not breathing and had to be put on a ventilator. His apgar scores were 2-2-5-5. He was flown to the OSF Children's Hospital in Peoria, IL where he began having seizures. A VEEG and MRI showed abnormal brain activity and several places that were damaged on his small brain. At this point we have no idea what is outcome will be. Here are some pictures of Zackary when he was in the NICU.

Welcome To Our IS Journey

Most likely if you are reading this you either know Zackary personally or know or have known a child with Infantile Spasms. Like many of you we researched this diagnoses and were given the grim outcomes. However, we did find some truly inspiring stories that gave us the courage to move forward. We hope that you will find our blog helpful and inspiring to you.