4 Months!

Happy 4 month birthday Jackson and Charlie Claire! I can't believe it's already been 4 months! And what a 4 months it has been!

I spoke to soon the other day...shocking, I know! Charlie Claire is most definitely still having spasms.  They are not as intense or severe, they are much more subtle now and sometimes it will only happen once (instead of 30-40) but the bottom line is that they are still happening.  Therefore, we will be increasing her evening dose of the Sabril to 10mL and see what happens with that change.  Our dr reminded us that this is a marathon, not a sprint and to just keep going day to day right now. 

I also spoke to soon when I said C was eating every 4 hours...I meant 3! This girl is eating us out of house and home! So much so that we are now giving her pedialyte in place of a couple of her feedings so she is getting the volume without getting the extra calories.  If C is supposed to eat at midnight you better believe her eyes are popping open at 11:45 to make sure you are ready for her.  The steroids are also still causing the restlessness so while she is sleeping a lot during the day she is awake and uncomfortable at night.  Jason and I are definitely running on empty right now.  Jackson on the other hand is sleeping from about 7:30 at night till about 7 in the morning - at least he and the dogs are well rested!

The vision specialist came today.  I think I was expecting her to be able to tell us exactly what we are dealing with in terms of Charlie Claire's vision but I don't really think we can assess that right now.  She did tell me that we can't compare CC to Jackson right now because Jackson is not on 3 different seizure medications and he is not having a bunch of seizures a day.  Since we do not know how the medications are affecting C's vision (blurred, doubled, etc.) it is hard to say what she is sees.  So, what we do right now is work with her on holding her toys and playing with toys that have lights -- basically if she shows an interest in something go with it.  However, C isn't showing interest in much these days.  The specialist told us that since she isn't very interested in toys that we should work with her on touch.  She showed us how to give C a baby massage to engaged her muscles and how to talk to her about what we are doing to involve her and interact with her.  C is really responding to touch these days as far as she really likes to be close to people (even Jackson!).  Hopefully the massaging will also be a way for us to help calm and relax her as well.