Reason to Celebrate

In celebration of 2-years without symptoms or signs of Infantile Spasms, I decided to post a few pictures from the past. A few show just some of what this amazing little boy had to go through as well as some that seem to say, "Infantile Spasms...up yours!" He has grown-up SO much and we continue to be amazed each and every day. We are well aware of what a blessing Kaelan is in our lives and how lucky we are that there have not yet been (and hopefully won't be) any lingering issues with his past disorder. As scary as it all was, it makes us even more grateful for every milestone he reaches, every word he says, and each and every smile. Enjoy, but be prepared, some are a little sad.

Before

This is Kaelan just a few days before we noticed his first episode of Infantile Spasms. 5/27/07

During

Most of you know that the first time we took Kaelan to the Dr.'s office,which was the following Monday, he (not our normal pediatrician) said to keep an eye on it and pretty much passed it off as developmental twitches that shouldn't worry us. Mike had the incredible insight to record one of the episodes (seen above) and take it back to the Dr. because we knew something wasn't right. So, the very next day, camera in hand, we were back in the Dr.'s office. After seeing the video, this pediatrician immediately got on the phone with Dayton Children's Hospital to let them know we were on our way. Scared out of our minds but relieved that something was being done, we headed to the hospital. 6/5/07

You would never know this happy little guy was going through something so horrible. We're putting on his hospital gown and he's still smiling.
Just look at that sweet face!

Hooked up his heartrate monitor with ID tag on his ankle.

Day 2: We tried to bring things from the house to make him feel at home, or at least as much as possible. They moved his heartrate monitor to his toe to try to allow him more mobility without it falling off. This same day he had to go 8 hours (almost all of which awake) without eating to prepare for his MRI for which he had to be completely sedated. It goes without saying that saying good bye to him and watching him being taken into the MRI room with strangers, and signing a piece of paper saying we are aware of the complications and risks of sedation was the most difficult thing Mike and I have ever had to do.

After spending 3 days in the hospital we were released to go home with the task of giving our 5 month old son 2 shots a day of steroids along with Vitamin B to stop the spasms (siezure activity). 1 week later, we were back in the hospital getting another EEG done to see if there had been any progress. This is a shot of our precious baby boy hooked up to over 25 electrodes but still resting so sweetly. Luckily, our neurologist was already able to see a decrease of siezure activity in his brain (which is what was causing the spasms). We later learned that the early detection thus early treatments were absolutely key to his quick recovery and lasting good health.

Although the steroids helped stop the spasms, it came at a price. Kaelan quickly began to retain water and swell. The next few pictures are a progression of his weight gain. 6/15/07

He also increased his sleeptime. 6/23/07

Just 2 weeks later. 7/4/07

Our little champ still made it through Aunt Melissa's wedding and saved a dance for Mommy and Daddy. 7/7/07

The weight at it's worst. Because of the drastic swelling, his skin was stretched to the extreme. He was unable to smile or open his eyes completely. He also had a little bit of developmental set back with his motor skills due to his weight gain. He simply was unable to move very much or sit up unassisted because of his chubbiness. 7/13/07 Around this same time, Kaelan would go from getting 2 shots daily to just 1 of the steroid.

After

2 weeks later he was back at the neurologist for his 3rd EEG. The result - totally normal brain activity. So long steroids! The next few pictures are a progression of his weight loss once he was able to come off the shots. 8/4/07

There's the smile we know and love! 9/22/07

Still our little chubby buddy. 10/7/07

By his 1st birthday, he was back to a normal weight, despite the entire cake he just ate. :) Although his motor skill development was set back a little, there's been no stopping him since.

"And Now I Can..."

Operate (and ride) diggers...
11/08

I learned sign language (firetruck)...
11/08

I can jingle a bell to the beat and steal the show...

12/08

Ride a pony...

10/08

Drive a car...

7/08

Read a book...(continues to be one of his favorite things to do)
6/08

Play the piano...
12/08

Swing a bat and hit a ball...
3/09

Ride a bike (sort of)...
4/09

Intimidate, "Bring it on!"...

4/09

Breakdance...

6/09

And of course get into trouble!

7/09

And now, it's as if nothing ever happened. When this all began, doctors prepared us for the worst. Kaelan could have had any number of development issues, including but not limited to anything from having trouble with algebra to being completely incapacitated. But now 2 years, no medicine, and zero symptoms later, doctors are amazed at his progress. Although we will continue to track his development, we have every reason to believe he will continue to have a completely normal and healthy life. We know the support of family and friends, and most importantly the abundance of prayers, are what allowed our little boy (and us) to get through that difficult period. We will be forever grateful and will never forget how truly blessed we are. Thank you all!