Silent Night, Holy Night!

Merry Christmas to all and to all a good night!

Our weekend...

It started off with the Nutcracker!  Grandma Peggy watched Nicolas while Jake, Garrett and I had a lovely dinner and enjoyed a beautiful performance...one Garrett (believe it or not) looks forward to every year..."Its tradition...we have to go"...he told us!  We purchased Garrett another Nutcracker while there...which brings the grand total to 17!!!  Crazy!  Then Garrett and I made Christmas cookies at Mema's on Saturday with Jack, Will, Kimra, and Shannon...Jake stayed home with Nicolas.  On Sunday Garrett and I made chocolates at home...other than that it was a fairly lazy day.  

Throughout the weekend Nicolas had a few moments where he seemed warm and a little congested...and on Sunday he was running a fever...so we gave him Tylenol and that helped.  Today I took him in to see his pediatrician and found out Nicolas has an ear infection.  So he is on an antibiotic and we are going to give him breathing treatments to help break up the congestion.

Overall he seems fairly well...a little cranky at times but an ear infection will do that to ya!  Mostly he is snugly!  I love that!

Hopefully this won't last long!

Love, 

Felisa

Yesterday's Appointment at Riley!

Yesterday we met with Dr. Hainline...he is a Metabolic Geneticist.  He ordered more blood tests to rule out a couple more things...if those tests come back negative then we are going to have a muscle biopsy done to rule out any mitochondrial disease.  So Nicolas had the pleasure of getting his blood drawn again...they stuck him 3 times and only received enough blood for one test...after three sticks they have to get permission from the Doctor to try again but he had already left for the day....so they are going to call us today to let us know if we can have it done here or if they can wait to do the rest of the blood draws at Riley on December 30th when we have the MRI.  We won't see Dr. Hainline again until June.  While there we also spoke with a Social Worker.  We are looking for programs that will help us give Nicolas everything he needs as well as information beneficial to us as parents...she was very helpful and we look forward to working with her more.  Without a diagnoses it is very difficult to get into any programs but she mentioned a few things that will make it easier.  She was very resourceful!  

As for the 24 hour VEEG...Nicolas had 3 Myclonic seizures and showed some Hypsarrythmia while awake.  The Myclonic seizures lasted less than a second...they are quick jerks that look like when your sleeping and you have a quick jerk and wake up...Hypsarrythmia are the irregular brain wave patterns they see on an EEG that suggest he is having Infantile Spasms.  They said that while they did see Hypparrythmia they did not see any Infantile Spasms occur.  Because there is still some seizure activity they have increased his Topamax medication.  If the Myclonic jerks don't get better then they will change his medication.   We are to call them with an update at the end of this week.  So this is all pretty good news...and we appreciate their efforts and eagerness to help Nicolas.

I'll let you know after the Holidays what we found out about the MRI and blood tests!

Enjoy the Holiday spirit...I know we always do!

Love,

Felisa

Happy Thanksgiving!

We are so thankful for the many things we have been given! 

Enjoy your holiday!

Love Always,

Felisa

24 hour Video EEG (VEEG)

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!

God is with us!

Love Always,

Felisa

We are done with ACTH!!!!

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!

Love Always,

Felisa

ACTH: 5 days to go!

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!

Felisa