Sept 15th

Nicky has been plagued with seizure activity since our stay at U of M.  As a result, the doctors prescribed him phenobarbital 2x/day through his feeding tube.  Seizures became manageable after that point & the dosage was lowered.  Within 3 days of lowering, the same apnic seizures came back.  Actually 15 in less than 45 minutes.  These types of seizures stop our son from breathing & makes it harder for him to return to his baseline afterwards.  The docs made a decision to higher the dose & we had been seizure free for almost 2 weeks.  On 9/9, we started to witness a different type of seizure that some call rhythmic seizures which are associated to grunting & arm extension but thankfully he has the ability to breathe.  On 9/13, we began seeing more than 1 of these types of seizures daily & began to worry about his blood levels (this is tested to see if the anti-seizure medication is at an acceptable level to control the seizures).  His levels were not where they needed to be however the Neurologists believe Phenobarbital is helping with the apnic seizures & he may need another anti-seizure medicine to control the new seizures we've been seeing.  He has experienced 4 seizures again today & just recently, we had to administer Valium to get them to stop.

As most of you can imagine, this is such an emotional roller coaster for our entire family. Words cannot describe the hurt all of us feel when we see our sweet little baby boy experience so much pain & there is little to do to take it away.  If I could take this away from my son, I would without hesitation!!!   I know I have the strength to weather this storm but there are moments where I just can't find the emotional energy to stand strong & today is one of those days for me.

I'm finding these blogs help me to share my son's story, keep those updated on his condition But it also provides me with a medium to release the emotions that are running amuck inside of me.  Thank you for letting me share this experience with each of you...xoxo Jenn