Created by my talented Aunt Leila who has only met him once! Thank you for capturing the sweetness of his smile and the innocence of his eyes....We love it...It's absolutely breathtaking! We will cherish it forever!
In April we went to Riley for a couple different visits and all went well...Nicolas got his teeth cleaned for the first time and he really wasn't a fan of it! Poor thing... But other than that Dr.s were saying he looked good. There is possibly a new genetic test that will be available for Nicolas to take in a few months...so we will wait for that...but no other tests are out there now that include his symptoms. Our pulmonologist scheduled another sleep study to see how well he is breathing since his pneumonia in February. That will take place this Tuesday. I'll let you know about the results soon!
Thanks for being patient with my blog! I'm sorry it has been two months! Crazy! We're doing good and still need your prayers!
I have been making cakes lately so I thought I'd share them with you!
There are a few birthday basketball theme cakes that I forgot to take pictures of ...my nephews loved them! I'm also missing a baby shower cake too...and it was cute! O well... Cakes have certainly kept me busy!
(For my friend Terry's wedding)
(For Nicolas, Emili and Tommy's family birthday party)
The last are my favorites! Garrett had an art fair at his school where all the proceeds went to Riley Children's Hospital. They had a bake sale and asked for donations and this was our contribution. Garrett donated an art project in honor of Nicolas to be purchased also. My mom and I took Garrett that night and we all had a great time!
It was a mummy...and Garrett was very proud of it!
Mema and I liked it so much we got into a bidding war over Garrett's art piece!
There were 4 cakes in all...the theme was Around the World so I made Mexican Chocolate cake Riley Wagons...completely edible.
Garrett decorated this cookie at the festival! Pretty talented if you ask me!
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