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

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

Halloween Pictures!

If you "click" on the pictures...you can see them in a bigger format!  Same goes for all slideshows!

 

Linus...the search is over!

We have found the great pumpkin!

We went to Riley yesterday to meet with Developmental Pediatrician Dr Dusick and the Ophthalmology Doctor.  Instead of reducing meds for Nicolas we added one.  Nicolas still holds his hands, jaw, and toes tight...so we are going to try a muscle relaxer to see if this will help in our efforts to get his hands open and encourage him to open his mouth more.  The bad part is that this med can cause him to be sleepy and he is already sleepy!  If we don't see results we will take him off the med.  It addition to this, she wrote a scrip for hand splints.  Nicolas finally made the growth charts in ALL areas!  Shockingly...he is almost exceeding the chart in height to weight ratio...No he is not really tall...Have you seen his parents!?!  HA!  So Nicolas' is on a diet...no more pureed Twinkies for you big guy!  Instead of 32 ounces a day we are cutting back to 29 ounces a day.  We are switching formula once again...we wanted to get off Nutramigen since it is not necessary anymore because he is tolerating feeds...We are going to try Infamil's Gentlease.  As of last night we took him completely off the night time drip feeds...He will now get 6 meals (by bolus/tube feed) at 145 ml a day.  Last night he did great!  And he started making some noise around 6:45 this morning....I believe he was saying..."Where's my food?"  As far as his heart rate...she is backing the monitor back off to 60 and said that is the average low for his age.  I believe that is everything from the Developmental team.  During the Ophthalmology visit the doctor dilated his eyes and found that all parts are there and they are working correctly.  We will have a follow-up with both offices in March.  

Today Nicolas' ACTH shot will be .3 mls....3 weeks to go!  He is still having a small spasm a day and can be a little cranky when moved around.  He mostly wants to hold still.  In the evening he enjoys moving around a little more...last night we were groupies at the GDog and Jake Concert!  That is the name of Jake and Garrett's Rock Band for Play Station!  It rocked!    

This Friday is Nicolas' Halloween debut!  Our chunky little pumpkin is going to look so cute!  G is pretty excited about his costume...all I'll say it that he practiced using the whip all week...Miles is tamed!  And scared!  Check out the blog page on Saturday!

Much love!

Felisa

Chubby Cheeks!

They said ACTH could cause him to get chubby cheeks....ya think!?!?  They are so kissable and there is plenty for everyone!  The little red bumps you see is baby acne due to the ACTH which is a hormone steroid.  After we finish ACTH both will go away...however after seeing my baby pictures the cheeks may not be due to the steroid...sorry Nicolas!

Garrett's day at the Water Park

What did Nicolas do at Mema's?

Play with Camden!

After feeding Nicolas, Mema walked away to rinse out his tubes only to find that Camden had pulled himself over to Nicolas.  Nicolas loves his hugs! Love you too Camden!

Happy 10th Birthday Garrett!

These are some of the pictures taken at the water park!

We had a great time!

Thank you Kimra for taking the pictures!

4 Weeks to go!

So far he still has 1 tiny spasm a day!  So I'd say he is tolerating the weening process just fine.  As far as his heart drops...even after the monitor was adjusted he is still having an occasional drop.  Maybe twice a week.  We will talk to the Developmental team about this at the upcoming Riley visit on Monday.  We will also discuss the necessity of one of his meds.  It was given to reduce his saliva production because he was retching and not swallowing the saliva in his mouth...we felt that this would reduce the urge to retch and make him more comfortable.  He currently takes 5 different meds...3 of which (possibly 4) he will go off once we finish ACTH.  Also to be discussed...Nicolas' formula.  He was put on 27 calorie food that had less water but still met the regular daily caloric intake.  We reduced the amount of fluids because AGAIN he was retching and not tolerating feedings at all.  We felt the overproduction of saliva and large volume of formula were related some how.  Since ACTH he has not retched once and we now have him on 20-calorie food (which is the normal amount) and he is still taking in the same amount of calories.  Now that he is tolerating his feedings we would like to start weaning him off the night drip feed.  The night drip feed starts at 9pm and finishes at 7:30am...and accounts for 14ounces a day.  Getting him off the pump means more feeds by day. Once we get the OK from the developmental team we will start weaning.  All feeds are still via feeding tube.  As far as Oral feeds go...we cannot begin that until he has another swallow study and passes...which we hope to do once off ACTH.  Even though oral feeds aren't possible at this time, the speech therapist suggested today that we start putting formula on the pacifier so that he can develop and enjoy the sense of taste.  

I can't believe he is turning 10...It doesn't see possible!

He may be wearing deodorant but he is still my baby!

In celebration of his 10th birthday, this Friday Jake and I are taking Garrett and 3 of his friends to an indoor water park in Shipshewana!  Oh pray for us! HA!  His birthday isn't until November 2nd so he thinks he is having a BIRTH WEEK!!!  Honestly, I don't know where he gets it!      

Enjoy your weekend!

Felisa

Our 1st Family Photo!

We took this in our backyard last night!

Jake is pretty proud of himself! It is a lot of work setting up the tripod and hitting the timer button...not bad for an amateur!

Well, Nicolas' monitor is fine and his heart rate only goes low enough to initiate the alarm during a deep sleep.  They said it is typical for the heart to slow down a bit now that he is older...initially the machine was to go off if his heart rate dropped below 80...so they adjusted the machine to go off if it dips below 70.  Prior to the adjustment it was going off constantly and last night it didn't go off at all!  We are thankful for the good news and a good night of sleep!  

His spasms are still about once a day.  He seems to be tolerating the weaning process so far!  During his therapies this week he was pretty sleepy...which is par for the course with Nicolas.  BUT...ACTH and his Topamax medication are both capable of making him drowsy even though he has always been rather sleepy.  So we will keep an eye out for any changes while we wean and talk to Riley about it during our next visit.

Have a great day and a wonderful fall weekend!

Love,

Felisa

ACTH-Week 4 Complete!

Today we went to Riley for his 4 week checkup.  At 1pm he had a brief EEG and then we met with Sarah McCammon to discuss the results and what our next step would be.  The EEG showed no signs of Hypsarrythmia.  Which is great news!  Hypsarrythmia is an irregular brain wave pattern that is associated with infantile spasms.  The EEG still shows irregularity in brainwaves which is likely to turn into a new form of seizure.  We were informed that this can happen so we aren't really surprised.  Tomorrow we will begin weaning Nicolas off his ACTH.  He is currently getting .6 mls a day.  Each week I will reduced the dose by .1 ml.  If he does not tolerate the weaning (meaning his spasms increase in number) than the amount we reduce will be less.  He is currently having 1-2 spasms a day...but he has not had any yet today.  Sarah McCammon said that even though we will begin weaning doesn't mean we will not continue to see improvements.  

Last week Nicolas started to have some heart rate drops while on his monitor at night.  Dr. O'Brien sent us to parkview to have an EKG done.  It turned out normal so we went to see a pediatric cardiologist.  Dr. Gyzl did another EKG and an ultrasound in her office and found that Nicolas' heart is perfectly fine.  So she put him on a heart rate monitor over night...and wouldn't you know it...he didn't have one drop!  But every night since then he has!  Last night I got up 4-5 different times.  He is breathing fine and his color looks good...It is briefly dropping and correcting itself.  BUT this new symptom is a bit "alarming" (pun intended)...So tomorrow I will call the company that owns the apnea monitor and have them come to our house to make sure it is working properly and to have the information from the monitor down loaded.  Sarah McCammon plans to call Dr. Gzle and request that Nicolas be on the monitor until he has a heart rate drop so that we can see exactly how low it is dropping.  From Dr. Gyzl's point of view, Nicolas' heart is working properly and that the drops occur due to neurological issues.

SO...that is what we learned today.  It was a good day!

I will let you know how he does throughout the weaning process!

We will still have weekly lab work and blood pressure checks until completely off the ACTH.   Nicolas should be off ACTH in about 5 weeks!  

Keep prayin!

Felisa

ACTH-The 2 week mark!

Well! We just had our 2nd computer crash on us this year! So I haven't had a whole lot of opportunities to get online to update you! He is still having 2-3 spasms a day and his blood pressure is still a little high. We have increased his blood pressure medication 3 times. He is still pretty irritable in the afternoon but he looks so good! We are still very hopeful! I will try to post a picture soon. He just got his first professional pictures taken at our house this past weekend...He had 3 outfit changes...I told him it was a little excessive...but he didn't care...He kept sucking throughout the pictures so he looks extremely pouty...think Zoolander (if you've seen the movie)...I'll try to post the proofs as well! If you were wondering...Garrett placed 12th in his last race! He was so excited! Now flag football has started and at his last game he ran one in for a touchdown and as quarterback he had a touchdown pass! He is so much fun to watch! Well...Nicolas' next check up is Monday...I will try to post before then!

Thank you for your continued prayers!
Felisa

ACTH Day 7

I just gave Nicolas his 7th shot. He didn't cry but boy is he squirmy!  Every time we start to wipe his leg with alcohol he starts in with the squirming...it is so cute...even if we are about to give our child a shot!  Yesterday he had two spasms and none overnight.  During our Riley visit we found out that his blood pressure is still a little high.  Nicolas is now on a diuretic medication...since ACTH causes water retention, this will pull the extra water out so that there is less pressure.  We have to go see Dr. O'Brien (Pediatrician) on Wednesday to check and make sure his blood pressure is coming down.  Because of this medication we will have to watch Nicolas' potassium levels too.  If they drop we will add a potassium supplement to his list of medications.  I currently give him 6 in the morning, 1 in the afternoon, and 4 at night.  This morning he had a spasm at 8 am.  Today his Mema Marilyn is going to watch him while I go get a quick hair cut.  And later this afternoon his brother has his last cross country meet.  Garrett has to run a mile.  At the last race he came in 26th out of 60!  He is really loving this running stuff...must take after his Aunt Kimmy!  We are so proud of him and we will let you know how he does!  I've always considered myself so lucky when it came to having Garrett (and Nicolas too!)...but seeing him with Nicolas just melts my heart!  A couple weeks ago we were driving in the car and Nicolas needed to eat.  While Garrett fed him in the back seat, he talked so sweet to him.  Watching in my rear view mirror almost made me cry!  Not only am I lucky to have Garrett and Nicolas but they are lucky to have one another!  God is so good.

Have a great day!

Felisa

ACTH Day 5

Sunday was much better!  He had moments of fussiness but he was not anywhere near as upset as he was the day before.  He is having a few spasms and some twitching daily but it is much less than before.  Today is day 6 of ACTH and Nicolas had physical therapy this morning.  She was excited!  Sue (the physical therapist) said she saw more movement today from him than she had seen from all his prior therapy visits combined!  Today is Nicolas' 1 week check-up at Riley.  Jake is in Chicago today so Nicolas and I will head down to Indy around 1.  

Nicolas is having his 1st spasm of the day right now (9:30 am).  So I will talk to you tomorrow! 

Felisa

ACTH Day 4

Friday night went wonderful...no spasms...and he didn't have any until 8 pm Saturday night!  The hard part yesterday was how irritable he was.  It was non stop from 12:30 pm to 1 am!  He started sounding hoarse sometime in the evening.  He seems so hungry but when we would feed him it didn't seem to help.  Rocking, music, vibrating chair, going for a walk,  even putting him down early...nothing seemed to help...so we called Riley and asked if we could give him Tylenol...and they said yes.  Shortly after that phone conversation he gave up and fell asleep so we held off on the Tylenol...But at 5:30 this morning he had another spasm and started getting fussy so i gave him some.  He had another spasm at 9am.  I gave him another dose of Tylenol at 9:30 and so far he seems pretty comfortable.  Lets hope that works!  He does have two teeth pushing through so we not really sure if its his teeth or the ACTH bugging him...or all of the above!

ACTH Day 3

Well he had 3 clusters of spasms during day 3.  One at night and 2 during the day.  Usually he has 8-10 clusters a day!  We have even seen improvements in the twitching.  He definitely is getting hungrier and is telling us!  He gets fussy 45 minutes prior to feeding and sucks on his pacifier like crazy!  It is loud and hard smacking...think Maggie Simpson...and when nothing comes out of it, he gets frustrated!  He is bringing his fists up to his chest during his feeds too!  All this is very exciting and we hope it only continues to get better!  As far as the side effects go...we have seen an increase in appetite and he is irritable.  He seems to be irritable more during the evening.  His fussiness is fairly constant until we hook up his drip feed at night.  

It is good to know he is hungry!

  

ACTH Day 2

Jake gave the second shot.  Nicolas seemed to cry a little more today.  Probably because his mommy is such a natural!  HA! Honestly, daddy did great.  We were discharged shortly after. The Neurologist stopped in before we left and mentioned Nicolas' blood pressure was a little elevated.  On Monday we are scheduled to go back to Riley for lab work for our 1 week follow-up and to have his blood pressure checked again.  Nicolas was wide awake from about 8:30 to 10:30 this morning.  He seems relaxed so far.  The first spasm we saw today was at noon on the way home.  Here is a picture of him today.  We will attach a new picture to every post so that you can see the weight gain. 

ACTH

On Monday last week we contacted the Riley Neurology Department to inform them that Topamax was not working. On Tuesday we were told ACTH was our next move. So the nurse began making the arrangements through insurance and with a pharmacy that carries ACTH. I then took Nicolas to Parkview North so that he could have a Chest x-ray, blood and urine test. In order for Nicolas to take ACTH we had to prove he was a good candidate (i.e. not a diabetic, does not have high blood pressure, does not have an infection). Then yesterday I had to wait for UPS to deliver the medicine...apparently insurance wants you to sign for $84,000... This will last us three weeks. We will know if it works within 1-2 weeks. ACTH is a medicine given by injection (shot) in the child's leg. It is given at home once a day. If it does work, Nicolas will be on it for 9-10 weeks. Nicolas will be taking a high dose and along with that comes the following side effects...

• Increased chance for infection
• Thrush of mouth
• Diaper rash
• Increased appetite
• Water retention ("chubby cheeks"...as if he needed help in this department)
• Stomach irritation (He is back on Zantac for this reason)
• Increased blood pressure
• Fussy or irritable
• Rash on face
• Electrolyte imbalance

Because of the side effects, once a week Nicolas will have lab work. The 1st week is at Riley, 2nd and 3rd week can be done in Fort Wayne, and then the 4th week (if ACTH is working) Nicolas will have another eeg along with the lab work at Riley. As of today Jake, Nicolas, and I checked into Riley to be taught how to give the shot. Nicolas had been really good about getting his immunizations so I thought...piece of cake, right!?! Well I just gave him his first dose. He did great...I cried. No turning back now! We pray for his health and healing.

Lord, hear our prayers...
Felisa

Hello!  I know it has been a while...my apologies!  Well...last week we visited Riley (again) to talk with the Neurology department.  We still have no diagnosis.  What results we do have back from the spinal tap and blood draws have came back negative...but we are still waiting on a few tests!  What we do know is that Nicolas has infantile spasms which are a form of seizures.  He will outgrow them sometime between now and three years of age.  There is limited treatment options for these and they rarely work.  Once he outgrows infantile spasms a new form of seizures will take the place of them...at that point we will need to do another EEG to determine what kind and then more medications will be available with a higher success rate.  Right now he is currently taking Topamax for the spasms.  In 14 days we will know if it is working or not.   Once we get the brain to stop seizing Nicolas will have more opportunities to develop...However through our three therapy sessions a week we have already began to see progress.  It has been fun to watch!  We have appointments scheduled at Riley once a month through December.  I'll keep you informed once we return from each visit!

Thank you for your continued thoughts and prayers!

Felisa

Riley Updates from Emily Vlk

Thursday Night...

These are from my friend Emily who lives in Indy...she sent them out this week...Thanks Emily! I'll update you when possible...we should be coming home soon...maybe tomorrow...some corrections (which were my fault)...spinal tap and blood test results will be back in 3-4 weeks....10 -14 days refers to how soon we'll know if some of the medications work or not...my bad. Sleep study went great with good results...he just had an echo cardiogram...not sure about that yet. We have an appointment in August scheduled with Neurology and Dr. Hainline to discuss results and treatment plan. We currently are trying some medications that are to treat his symptoms...not diagnosed yet.
Love to all!
Felisa

Thursday Night...

Hello,

Nicolas had a big day yesterday. He had some blood work done as well as a spinal tap. The results can take up to 10 - 14 days to come back to the hospital. I need a little more clarification and I will get it soon but they think Nicolas's brain has lots of information to tell his muscles and organs but that information is not getting there as well as we would like via his nerves. Another busy day at Camp Riley. Nicolas is glad that his daddy comes home today from his business trip. He was glad Grandma Stein came and visited yesterday. Susie is visiting tomorrow.

I found this link on the Riley website if anyone was interested.
http://www.rileyhospital.org/information-desk/online-postcard.jsp

Love you!
Emily

Wednesday Night...

Good Morning -

I haven't spoken with Lis this morning yet, but they had a good day yesterday. They were moved to a different room with private bath. Now Nicolas won't have a stinky mommy. He also saw an eye doctor and....good news....no vision issues to report!!! Another point on the chalkboard!! I will keep you posted on updates.

Love, Em

Tuesday Night...

Baby Nicolas has made lots of new doctor friends. He had an EEG this morning. He has met with a hearing specialist and.....good news!! His ears are in perfect working order. He mustn't not want to hear what we have to say. :-) He will be doing a sleep study later this week. Some dental doctor is giving him some medicine that is supposed to help with his spit issue. Her sorority sisters are bringing her lunch and dinner. I guess that means I am cleaning tonight. I will keep you posted!

love you!
Emily M. Vlk


Monday Night...

Last night Joe and I took Felisa dinner at Riley. They are currently in a single, but may have to move to a double if a super sick infant comes in that needs it. They are hoping to be moved to one of the long term rooms that has a private bath. Eventually, Lis will be staying at the Ronald McDonald House if this is a long long term stay. When they first arrived, they were in a double room with some rude/unkind roommates, so the upgrade was nice and appreciated.

They met with the Developmental Team and they started the discussions on what testing they wanted to do and what each doctor was looking for. They are going to be meeting an eye doctor and hearing specialist to make sure Nicolas does both. Other testing is required but I don't remember it all. I should know more today.

Lis seems to like her nurses and is as happy as I can be to be at Riley. She believes this could be a long stint but we will see. There are laundry facilities on her floor so I am going to pickup a small bottle of detergent for her. She is packed well. A week's worth of clothes in the room, another week in the car trunk and a third week at home already to go. I am creating a downtown guide for her with restaurant/shopping/entertainment options for her. Garrett will come down maybe Monday. His school starts like August 12th so early. I am picking up my apartment tomorrow in case of visitors.

I am going there tonight too, unless some of her sorority sisters are there. I will keep you posted. Anything you want me to ask?

Love - Em
Emily M. Vlk

We had another appointment at Riley this past Wednesday, this time to meet with both the pediatric gastroenterologist and a developmentalist. The GI said Nico's esophagus and stomach look good. The nisson looks good and doesn't appear to be letting stomach contents back up into the esophagus. There are no signs of inflammation and food appears to be moving normally through the digestive tract. Though it is not likely, it is possible Nicolas is having allergic reactions to the food though there is no evidence to suggest that at this time. Nico's retching, which has become more frequent and much more uncomfortable for him over the last few weeks, might be caused by intermittent problems with his stomach emptying into the intestines. Again, there is no evidence of this except the retching.

Now onto the heavier stuff. The developmentalist spent a couple of hours with us reviewing Nico's history and observing him. She was able to see him retch and see his spasms, both video and live. She also spoke with the metabolic geneticist who had seen Nico last month. Because her goal is to help Nico feel better and to determine what is causing his symptoms, she feels he needs a neurological follow up as well as to try different treatments e.g. feeding changes and prescription changes. She also thinks that experts in infant development, pediatric neurology and metabolic neurology should observe Nicolas on a regular basis and be able to observe him as a team. Therefore, she recommended we admit Nicolas as an inpatient at Riley. So, back to the hospital we go. We are taking the family truckster to Indy on Monday and will be there until they can help our little angel feel better. As difficult as it is to go back to a hospital, this time 150 miles from home, we know that our prayers lately have been to provide him with comfort and to help us understand what is happening to him. Hopefully, this is the beginning of an answer to our prayers. Thanks to everyone for your continued thoughts, prayers and support. Though we don't have the opportunity to tell you thank you every day, please know that we think of you all daily and our hearts are full of gratitude that you are part of our lives. Until the next update....Jake and Felisa

Happy 4th of July!

This past weekend we had a wonderful time with our family and extended family up at Papa's lake house to celebrate the 4Th of July.

Here are our photos...

Dad dancing with me at the lake...

Our sweet little Nicolas is growing bigger and bigger every day...12 1/2 pounds!

We will be starting therapy with First Steps this coming week. There will be three different types of therapist working with him a total of three hours each week. Then later this month we will be meeting with a new team of doctors - Behavioral Development Doctors at Riley.

The Doctors are still stumped with Nicolas case and all past and recent tests all have come back negative. We are all looking forward to the day we get some answers for Nicolas.

Thanks for all your prayers and please continue to pray for us. We are in Gods hands and we are waiting on His timing - easier said then done some days.

Much LOVE...

The Stein Family

Back from Indy

Nicolas was able to leave the hospital on Thursday, because he recovered quickly. The procedure shows he is not reflexing and all medications for that has been stopped. They are making some feeding changes - over all that is doing really good. His is now a little over 11 pounds!

In 4 weeks they will be making their next trip down to Indy. Next week he will be meeting with his local Fort Wayne doctors.

Thanks for all the prayer and please continue to pray for them. I'm the Aunt and I get frustrated with not getting the answers they need for Nicolas spasms. I can't fully imagine what Jake and Felisa are feeling as the parents. They are trusting in God, but it does get hard waiting on His timing to answer prayers.

Much love and appreciation for the example Jake and Felisa are showing us.
Kimra

Pray for us...

Tonight Felisa, Jake and Nicolas are on their way to Indianapolis for the next two nights. Both parents are anxious for Nicolas and the procedure scheduled for tomorrow. The doctors will be putting him under to slide a camera down his throat to view the area from his first surgery, the stomach and parts for the large intestine. The doctors will be looking to see if he is still reflexing, which they think he is.

Nicolas is still having spasms, so the results of this will tell of the doctors what the next steps are for Nicolas. If he is not reflexing anymore they will have to look into other answers.

We will wait, pray for Gods guidance with the doctors and peace for the parents.

Memorial Weekend

Sorry for a delayed update, setting up the home is quite a task! We are starting to get the routine down...it has mostly been difficult on me...most of you know I don't follow any sort of schedule...in any kind of timely matter...but I have a dry erase board that keeps me on track! Our daily routing also includes a walk to pick up big brother from school. It is a two mile walk...Garrett thinks we have gone green but really mommy just needs the exercise and fresh air...the environment is just bonus! Well...Nicolas is doing great...Believe it or not our little
Nico is 9lbs 5oz! We have an appointment to see 2 Riley doctors on June 3rd. We are really looking forward to this...one doctor has already begun treatment...raised the amount of his Zantac and his feeds. His is still having spasms that are fairly painful...so we are very anxious for answers.
As for this weekend...we are keeping it low key! We worked on our landscaping...installed a video monitor if Nicolas' room...bought a baby swing. We are planning to go to Grandpa's lake house on Monday. We hope you all enjoy your weekend!

We will keep you posted!
Love
Felisa

HOME SWEET HOME!

Nicolas has been discharged from Parkview and is home. We are so thankful and very excited. We will still be making an appointment with a GI specialist soon on how to treat his spasms.

With that we would like to remind everyone wanting to visit us, that he is at risk of infections, pneumonia and SIDS, so he should not visit with anyone who has any symptoms of a cold or the flu and hand washing is essential to reducing the risk. As much as we miss you and want to visit with all of you, our responsibility is to keep our little precious gift from God protected, so if you or your children are sick you will need to visit us at a later time.

Thanks for being so understanding and thanks for all of your prayers and your continued prayers.

Much Love & Gratitude,
Jake & Felisa Stein

As of last night Nicolas weighs 8 pounds 3 ounces! Tonight we are going to begin feeding Nicolas by using a pump system. This will be a continuous feed that will slowly pump food into Nicolas' stomach over a 4-6 hour period. This will maximize the amount of calories he takes in during the night, allow him to rest more and it will be easier on his little tummy. The doctors are going to monitor him over the next 2-3 days to make sure everything goes well during the night feeds. As far as our discharge goes, we don't know when yet...BUT it was discussed today that we will go home with monitors. Nicolas will need to be hooked up to them while he sleeps. We will also go home with suction (this is because he pools his own secretions in the back of his throat) and a pump (for night feeds only). We are beginning to make arrangements for all the equipment...and tomorrow night we will be given a 1 hour training course on how to use the monitors. Anyone who will watch Nicolas has to be part of this training. Once we are home Nicolas we will also receive weekly visits from a Speech Therapist, Occupational Therapist, and Physical Therapist...all from First Steps. We will also be making an appointment to see a Peds GI soon...we are not sure when or where that will take place yet! Hopefully he/she will have an insight as to how to treat Nicolas' spasms.

More Importantly...
We were informed today that because Nicolas is still aspirating we should not take him to any public place for 6 months. He is still at risk for infection, pneumonia, and SIDS. Also he should not visit with anyone who has any symptoms of a cold or the flu and hand washing is essential to reducing the risk. As much as we miss you and want to visit with all of you, if you or your children are sick you will need to visit us at a later time. We have to think of him first...naturally, as I'm sure you all understand. Our little Nicolas is precious and fragile...he will continue to get stronger but until he is we must protect him as well as we can.

Continue to pray for us!
Love Always,
Felisa

Nicolas is 8 pounds!!!!

My New Bunny

I love my bunny!
Susan Vlk made it for me!
My mommy calls him Mr. Knuffles.

Thank you Susan!
I love you,
Nicolas

Good News!

Nicolas had his central line taken out! He is no longer on IV fluids. It was mentioned by one of the neonatologists that if he continues to put on weight we may be going home this weekend or early next week. His feeds are up to 70ml on 24 calorie per ounce Progestimil. We are waiting to talk to a Nutritionist to see if he is getting the maximum amount he needs to grow. Dr. Badder (our geneticist) said all tests are in and all is well with Nicolas. Dr. Smith (the surgeon) said "the plumbing works" and everything looks great for him to be released. HOWEVER, Nicolas is still having spasms...but we have calls out to Anna's doctors and today Nicolas began taking Prilosec...we will wait and see if this helps. It sounds like we will be released regardless of the weather or not the spasms are present. Keep praying! We need it!

Mommy & Me time...

Nicolas Loves His Nurse!

Nicolas has been under great care with all the nurses at Parkview...

Our favorite Nurse is Aunt Renell!

Belly Bong

This is how my parents feed me...

Listen for Jack's voice...

We caught Jack singing to Nicolas, "Rock a Bye Baby".

Swallow Study results...

Well...we found out that little Nicolas is still aspirating. Because of this, we will not be able to begin oral feeds. The Speech therapist said we will try the Swallow Study again in a month. That does not mean he will be unable to leave the NICU...it just means we will continue to feed Nicolas via his g-tube. We also found out that he is not refluxing...the surgery was a success! AND the last thing we found out..."the plumbing works"...his bowels are working just fine. Good news!

On an interesting note...I want to thank my sister again for creating this blog...she didn't know it at the time but because of this she has helped us in our efforts to find a cure for lil' Nicolas. After reading the blog, Anna, one of Jake's co-workers contacted us and informed us that she went through something very similar with her daughter. Anna has given us great hope! Our doctors plan to contact her daughter's doctors to discuss symptoms and treatment options for Nicolas. This may or may not be the answer...but we are hopeful! Thank you Kimra for helping us to connect with Anna...And thank you Anna for helping us and Lil' Nicolas. I'm sure God had His hand in this too! Through Him all things are possible! If anything, it feels good knowing that Nicolas is NOT alone in his symptoms and we will continue our efforts to find a cure!

I'll keep you posted on whats to come!
Felisa

Scheduled Swallow Study

Finally...
Nicolas is scheduled for a swallow study tomorrow morning at 8:30am. This will be his last big test at Parkview. Please pray for his doctors during this time.

Nicolas' History...

Here is a little history on Nicolas's health and what they have been dealing with...

April, 21, 2008
We went to the hospital 3 Mondays ago because Nicolas' pediatrician wanted to have some tests run and also thought he saw Nicolas have a seizure during an office visit...Once on the peds floor at Parkview North we began to see a Ped's Neurologist, a Geneticist, Speech Therapist, Ped's ENT...And the testing began...Nicolas has had an MRI, EEG, CT scan, Echo-Cardiogram, 5 days of drawing the maximum blood amounts for testing, Upper GI barium study and a swallow study...As of that Friday he was NOT having seizures and everything had comeback negative (meaning everything was fine with our little Nicolas) EXCEPT....the last of those...during the Upper GI study and swallow study they found out that food was coming back up after going down and entering his lungs...which we initially thought would be fixed with a little Zantac and another med used to strengthen that muscle around the tummy and esophagus...but after visiting with a Pediatric Surgeon Friday night he informed us that we needed to have surgery on his little tummy and put in a feeding tube...Aspirating is very serious...apparently there is an increased chance for infection, pneumonia, and SIDS...He explained that we needed to be back in the NICU so that Nicolas can be put on monitors and watched very closely! We were pretty shocked when we heard all of this and 2 days later our 7 week 5 day old baby was in surgery for 2 hours. Since then he has recovered nicely and our tube feed are up to 2 ounces every 3 hours! And in a weeks time he has put on 1lb!!!! Something he has not been able to do since birth! As of last night he weighs 7 lb. 12 oz.!! We are so excited! I never dreamed that I would be feeding my baby through a tube in his belly...time will tell how long he is to have this feeding tube BUT until it is out know it is a pretty amazing feeling to know I am feeding him ALL the nutrients he needs and he WILL grow! He is such a happy baby and we love him dearly! I can't wait for you to meet him!


Date: Sunday, April 27, 2008
We had a bit of a rough week...Nicolas had a bad Wednesday and is still recovering from something....the jury is still out on what that "something" was...he went back on IV fats and proteins AND they took away tube feeds for the first 24 hours...now we are gradually increasing tube feeds and he is up to an ounce every three hours...initially he lost weight but now we are back to gaining...Recently they found out that Nicolas was low on an Amino Acid SO that has prompted them add a supplement to his food every 8 hours and to do more blood work...we will find out about mid week what some of the test results are and go from there...

He looks much better than he did 4 days ago...he was given some antibiotics and that has seemed to help! Thank goodness!

It looks like we are going to be here another couple of weeks! This latest issue for Nicolas has really sparked a desire in our Dr.s to get some answers for baby Nicolas...there are 9 Dr.s that are currently working together and doing everything they can...please pray for them...

Your thoughts and prayers are still needed...and greatly appreciated!
Love Always,
Felisa

Date: Mon, 28 Apr 2008
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...

A new day...

Dear Family & Friends,

For the past several days Nicolas has had to put up with a nasty rash on his poor little bottom. This is probably a result to all the antibiotics he has been on...but it has been very irritating to him. We are leaving it open to air during the day and using his prescription strength "magic butt cream" during the night. Besides his bottom, he also has been gassy lately (he is definitely his father's son) SO between the two he has moments of being a little cranky...Right now, he is sleeping peaceful in his bed while listening to some classical music. He loves his music...it really is soothing to him! The neonatologists have begun to ween him off of the IV of TPN (proteins, fats, and electrolytes) because Nicolas is now "belly-bonging" 55 ml! He is still gaining... We are anxious to do the Swallow Study...that is when Nicolas will have to drink barium and they will do flash x-rays and follow the barium through the digestive system...From that we will learn how effective his swallow is, if he is not aspirating, if he is able to begin oral feeds, if he is still refluxing, and how well his stomach and intestines aid in digestion. That was a test ordered today but we have not yet been notified of a scheduled time. This is the last test for Nicolas here at Parkview North. There are a few specialists at IU Medical Center that our group of doctors thought may be beneficial for us to see...we are not certain yet if that is necessary and if it is, when that visit will take place. In order to leave the NICU Nicolas must have had his Swallow Study, be up to full feeds, off IVs, and shown consistent weight gain. Each and every day Nicolas continues to get bigger and grow stronger...considering his struggle...it is beautifully amazing to watch! He is more alert and awake during the day and sleeps more peacefully. We continue to pray that God gives our doctors and nurses wisdom and that he puts his healing hands upon Nicolas!

Love to all,
Felisa

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