Ignoring the ignorant

Okay, so I usually can let stuff slide but this comment really set me off. The other day I heard someone say that a certain Preschool program in our town called Bright Futures is where the "dummies" go. Yeah....someone who actually knows my child very well in fact and knows that he will be going there. When in fact Bright Futures is open to everyone in the area with first choice given to those in the early intervention program. Then to only children and then to anyone...actually there are more non EI kids there than EI kids. I told our PT that if Zack were to be labeled a "dummy" or "slow" for the rest of his schooling because we attends Bright Futures then I was out....here and now...no way is my child going to be labeled. So, he may not learn math well but who cares...I am 27 and still cannot do fractions!!!!

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