Wednesday, November 19, 2008

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

2 comments:

Aunt Karen Strom said...

Jake and Felisa,
We rejoice with you that you are seeing improvement and Nicolas will be off the meds.

We continue to pray for all of you for healing, wisdom, provision from God. God is good.

Aunt Karen and Uncle John

Anonymous said...

Your still in out thoughts and prayers. we are so thankful for this web site as it keeps us updated on his progress. Lots of love from Joe and Nancy B