Saturday, December 29, 2012

So Many Changes

Lately life can best be described as a roller coaster.  Levi swings between wonderful moods with huge grins to screaming fits.  These can rotate within the time frame of a single day, or even a single hour.  The new screaming fits are reminiscent of a newborn displaying the fear of falling.  His hands fly out and start to shake, and he screams in what seems like terror.  As soon as we pick him up, or hold him closer, he's fine.  We're not at all sure what has brought this on.  Some theories include the fact that he's been through a lot of hard times with bad memories in the last few months (hospital stays with many needle sticks, etc) and he is remembering and fearful; fear of falling; pain of some sort, maybe in his belly or g-button; that he is seeing more clearly (of which we have seen evidence) and some things look different to him, causing fear.  Really we just don't know.  We've taken video of one of these episodes and will forward it to his neurologist on Monday.

We have stopped giving him MCT oil.  This is a medium chain triglycerides oil, very fatty, that raised his Ketogenic diet ratio from 3:1 (fats:carbs/protein) to 3.5:1.  The higher the ratio, the better seizure control.  He has been experiencing a lot of belly pain and gas lately that seems to be caused by the oil.  Just today we switched to the 4:1 formula, with a bit of apple juice to bring the ratio back down to 3.5:1.  I'm excited to be giving him something as natural as apple juice!  Of course he doesn't taste it, but it's nicer for me to give him something that actually is supposed to be eaten, rather than nasty heavy oil.  Sometime soon we will stop the apple juice and raise him to the 4:1 ratio.  I'm hoping the apple juice will help with his bowel issues as well.  He is not pooping on his own again, we have been giving him enemas every 3-4 days.  We continue to give Miralax but it doesn't seem to be helping anymore.  We are at bolus feeds of almost 4 ounces three times a day, with continuous feeds overnight.  I will speak to his GI doctor on Monday and see what he thinks about starting a stimulant laxative called Senna.  This option was discussed during our last hospital stay, but Levi started going on his own.  Dr. Rosenblum may decide to put him back on continuous feeds, increase Miralax, or add another medication in combination.  I'm not really sure what direction he will take us in, but I feel like we're stalled right  now and need to move forward with something else.

Developmentally Levi is doing very well!!  He is holding his head and trunk most of the time.  He flops a little bit, but he knows what he's supposed to do and, more importantly, he is interested in doing it.  At the Christmas Eve service at church the little monkey held himself better than I'd ever seen him before!  He was sitting straight up on my lap, looking around at everything with big, sweet grins.  The other night we were reclining in a chair when he lifted his shoulders up and sat forward.  He's been doing this quite a lot lately, but this time when he sat as far forward as he could and still wasn't straight up, he wrapped his arm around mine and pulled himself up!  Not only once but several times!  It's moments like this that I know I'll never forget!

We still have issues to iron out, but at some point things will even out for Levi and we will begin to move forward at a faster rate, with less bumps in the road.  For now, I'll bask in the glory of his smiles and treasure every moment.

1 comment:

  1. aaww poor baby, he is adorable, I hope you get all his issues resolved, Sharon you are such a great grandmother and person! My prayers are with Levi and all of his family , may God bless you all!