We are done with the MRI

OK...1st off we ended up not spending the night...Sunday afternoon we received a call from Riley asking if they could move us back to a noon arrival time/1:30 start time...that worked out better...so we took it!  Mema and I left at 9:15 and by the time we checked in it was 11:45...Can you believe it????? Mema and I were actually early for something!  We are so good!  OK back to Nicolas...since we were EARLY...Nicolas' MRI started early.  We couldn't stay in the room with him. We handed him off to the nurse and Anesthesiologist and said our goodbyes at the door.  Then it was off to the waiting room for us...they said it was scheduled to take an hour and a half...it took two!  The first anesthetic they used gave Nicolas the hiccups...so obviously he couldn't hold still...So they had to put the breathing tube down his throat...which meant after he woke up we had to wait a hour and a half more to make sure there was no swelling in the throat...but other than that everything went smoothly...they drew the blood while he was sedated and they tried to get a urine sample too...but the little stinker wouldn't pee!  So they left the bag taped on him and he traveled home like that....but sure enough by the time we got home he peed!  Because it is for genetic testing I had to put it in my freezer.  Do not eat the frozen pee-sicle Garrett!  HA  We got home shortly after 8pm.  While dealing with the bag of pee...we noticed Nicolas seemed warm and sure enough he had a temp of 104.  So we called Riley (like they told us too) and they were no help...They will be receiving a few comments in the comment box from me today!  But while I was dealing with that Jake did what all good dads do...he gave Nicolas a cold bath and started to feed him...then I added some Motrin and he has been fine ever since.  I will be calling Dr. O'Brien (pediatrician) today.  He may have a cold...he does seem congested this morning.  That is all the news I have!  I was super glad my mom went with me.  It was nice to spend time with her and have someone to talk too...Thanks mom!

MRI

Riley called us Friday to let us know that Nicolas' MRI had to be rescheduled due to sedation reasons.  Normally they give children a moderate sedation to help children relax so they don't move.  It isn't clear what is causing Nicolas to have difficulties so they have to use anesthesia.  So they rescheduled us for Monday instead of Tuesday.  Jake already took off Tuesday to go and with the late notice he was unable to make arrangements with work...so Mema decided to go with me.  Our arrival time is 6 a.m. and the procedure will begin at 7:30 am.  So tonight Mema and I are driving down to stay at a hotel close to the hospital.  After he wakes up we will finish up the blood draws and get him fitted for the next car seat before traveling home.   The doctor will have the results in 24-48 hours and will notify us shortly after.  I'll let you know what we find out then!

Say a prayer for Nicolas tonight!

Thank you!

Love, 

Felisa

Santa's Little Helper

Check out that smile and those baby blue eyes!

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