Medicine

By far one of the most challenging parts of the day is giving Charlie Claire her medicine.  It is very important the C gets her FULL dose of medicine and that she gets it at a certain time. 

Currently, she only gets meds twice a day - at one point she was getting the steroid 4 times a day.  We can give C her phenobarb mixed with an ounce of formula (which is super helpful) but her Sabril and Klonopin are in a syringe.  The syringe is where things so downhill, CC has gotten really awesome lately at pursing her lips at us when we are trying to give her the meds.  We always try and give Charlie her medication at a feeding time because we have found that when she is hungry she takes it better.  Once Charlie gets her meds she has to wait 15 minutes before she can continue on with the rest of her bottle.  The 15 minutes is to make sure that the medication gets absorbed into her system - if she spits up before the 15 minutes we have to re-dose her which usually creates a SUPER SLEEPY baby because all of the seizures meds have a sedative effect. She typically complains the entire 15 minutes, can you blame her? Jackson would freak out if we had to do this to him, that boy doesn't even like it when we have to stop to burp him!

Here is a picture of C's evening meds - the big syringe doesn't actually fit into her mouth very well so we break it down into a few smaller ones. 

One of the big issues is timing of Charlie Claire's meds.  She has to have it within 11-13 hours of her last dose.  If we give her the morning dose at 7 she has to have the evening dose between 6-8 that night.  Like most babies she isn't like clockwork so her eating schedule may vary from day to day and sometimes we have to wake her up to give her the meds.  This is what I had to do last night :( It was so hard to disturb this sweet face...

Yesterday C's seizure activity was a little bit better than it was on Thursday but it is still happening more than we would like.  This morning from 6:45-8 she has already had 5 so we really aren't starting the day out on a good foot. 

On another note...we would like to send our thoughts and prayers out to Oliver and his family...he is a little boy in NC who is in a different but similar situation as Charlie Claire.  He was hospitalized this weekend for something unrelated to his seizures...some complications with his asthma.  Oliver is tough little guy but could certainly use some extra prayers this weekend. http://lanierlanding.blogspot.com/