Nicolas Stein & Family: April 2008

Tuesday, April 29, 2008

April 29 Nicolas Makes Improvements

Dear Family & Friends,

As it turns out Nicolas had a form of influenza last week...he is getting better...He still has some congestion, runny nose, and tiny bit of a cough...BUT his color looks great, strength is coming back, and weight is back up!

We just met with the geneticist tonight and we are still waiting for several tests to return...She is still uncertain as to what may be causing the spasms...The Neurologist is also unclear...but they are not seizures...3 EEG's has proved that...

SO we will continue to be patient and enjoy the "no news is good news" policy at this point...

Jake and I want to thank you AGAIN (because we can't thank you enough) but your thoughts and prayers are extremely appreciated...and your willingness to help in any way is amazing! Thank you! We can't wait to able to spend more time with you!

Love,
Felisa

If this is your first time reading our blog, here are a few things you may need to know...

This blog page is dedicated to informing our loved ones about our little Nicolas. It all began February 19th 2008. He was born a mere 6 lbs. 2 oz. and within 3 days dropped to 5 lbs. 8 oz. Initially Nicolas was diagnosed with Failure to Thrive and Reflux along with aspirating. He had a surgery at 7 weeks old to correct the reflux. They added a feeding tube at that time to prevent aspirating and improve weight gain as well. Once we checked out of Parkview North we began to see many specialists at Riley Children's Hospital in Indianapolis. After a few trips to Riley and several EEG's later he was diagnosed with Infantile Spasms...something he had been going through since 3 weeks old but was not diagnosed with until he was 6 months old. To try to rid Nicolas of these seizures, Jake and I gave him an inner muscular shot of a hormone steroid called ACTH. This medication dramatically improved his spasms to less than 1 a day. Before that, he would have 8-10 spasms a day. Due to the ACTH medication his immune system was affected and won't be back to normal until June of 2009. As of December 2008, Nicolas' MRI reported that he has a moderate thinning of the white matter that surrounds his brain which attributes to his delays in development. Doctors feel that all of Nicolas' symptoms are due to an underlying cause. Nicolas has gone through a great deal of tests in search of a cause and they have yet to determine what it is. Today Nicolas' weight and height are lining up with growth charts and his seizures are few. Through all of this, you wouldn't think anything has changed for our family. Not that this doesn't weigh heavy on us...it is challenging being patient with medical professionals and with a diagnosis. But through it all...we are so glad God gave him to us! We think he is incredible and love him dearly! With that I leave you this...read our blog so that you too can know more about Nicolas and our journey with him. Continue to pray for our family! Love, The Steins