Well! On Thursday someone canceled their 24 hour VEEG for Friday...So since we were on a waiting list they called us to see if we could fill the open spot. I had to be there between 8 and 8:30 Friday morning so I drove down to Indy Thursday night and stayed with Aunt Danae, Uncle Jake and my adorable niece Brielle....Thanks Browers!!! We had a great time and I must have been a little wired because I kept them up talking until 1:30 in the morning! During the VEEG they could see and hear everything in the room...and that feels really weird! But every time I witnessed something seizure like I would push a button, describe (out loud) what I was seeing , and then hit a reset button. Seems fairly uneventful...and then you throw in that the TV goes off, bright lights would come on, an alarm would sound and the nurse would come in...So to be completely thorough I must have pushed it maybe 12 times. I pushed it for jerks, twitches, eye rolls, tiny smiles, and for what I am pretty certain was a seizure. I feel that they received a vary accurate EEG that included anything we are concerned about. We will find out the results in 7-10 days. I will let you know as soon as we hear something. As for the MRI...It is scheduled for December 30th.
Jake took Garrett to see Aunt Kimmy, Uncle Timmy, Jack and Will in South Bend last night. The last couple days it snowed there and the boys wanted to play! 30 miles out...Jake thought Kimmy was lying about the accumulation because there was no snow...but when they reached South Bend...It was there...ALL 7 inches! They went sledding for 4 hours! They are on their way home now...I'm already home! I might try to catch a quick nap with Nicolas...he is such a snuggler!
Monday was the last shot! How thrilling! We met with Sarah McCammon yesterday at Riley and she said it will take a couple weeks for the swelling and irritability to go away...and a couple months for his blood pressure to go down and to loose the weight. She also said we may see improvements in development in the next 3-6 months. If we don't see gains than this will tell us a little more about Nicolas and what to expect. Also...in December Nicolas is going to have a 24-hour Video EEG and MRI with contrast and spectroscopy done. We know that Nicolas will develop a new form of epileptic seizures so the VEEG will tell us what kind of seizures (if any) he is now having. We have requested to see an Epilepsy specialist once we determine the type of seizure he is now developing. Now if Nicolas is still having seizures that are unseen than that could explain why he is so sleepy. If we do not see seizure activity on the EEG than this will suggest that we need to change his Topamax medication. Topamax is a seizure medication that can make children drowsy. The MRI will tell us how much his brain has developed since his first MRI at 7 weeks old. During the MRI, Nicolas will be sedated. We are currently on a waiting list for a VEEG in December and the MRI will be scheduled for December. Both will be done at Riley. We will continue with lab work once a month and his blood pressure every other week until labs/BP is normal....Unless he comes down with a cold...then lab draws are back to every week. Once everything is back to normal we will only be on 2 meds plus his multivitamin. CAN'T WAIT!!!!!
We still have to be careful...his immune system will not be back to normal until June. So with that being said, Nicolas will not be attending our family's Thanksgiving or Christmas. It is his first Christmas and a little sad that we won't be able to share it with all of our loved ones...BUT we are so glad he is here and keeping him healthy is of much importance. We have arranged for the my Mom and Jake's mom to watch Nicolas while we attend the each others family Christmas.
We can start giving him his immunizations again in late January. He currently is only caught up to his 2 month shots. We will meet with Dr. Hainline at Riley in a couple weeks. He is a Metabolic Geneticist and will probably continue genetic testing or a muscle biopsy at some point to help determine the underlying cause (why Nicolas is having seizures). When asked, Sarah McCammon said that Mayo or John Hopkins is a possible next choice if we feel that is necessary to get a second opinion once we get through the new year.
He now weighs 19 lbs. and 6 oz.!!!!!!!
That is all I have at this point. Please continue to pray for us and our little guy!
We have 5 days left on ACTH! For the past week Nicolas has seemed a little cranky. Mostly he wants to be held still or left alone. Movement seems to be irritating. BUT...He is starting to relax his fingers a little more and his eyes are opening more often too. We are so thrilled to be almost done! He still has an occasional spasm but not everyday. On Tuesday we will go to Riley AGAIN to see Sarah McCammon in the neurology department. We have a long list of questions and hope to have many answers. We will let you know what we find out. We are currently contacting a Pediatric Neurologist (by email) at the University of Michigan for information and we are considering Cleveland, who is number 4 in the country for Ped. Neurology, as a future possibility. We need and want answers. Hopefully, with God as our guide, we can find some!
Thank you for your continued thoughts and prayers!
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