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