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!