Updates

Marissa has had a great last week.  I tend to think it has something to do with the recent increase in one of her seizure medications.  Her last EEG continued to show a lot of sub-clinical seizure activity, increased generalized "chaos", and hypsarrhythmia - the key indicator of Infantile Spasms.  No doubt, much of her irritability has been due to seizure activity.  We see neurology today to discuss what happens next.  It's disappointing to say the least that less than six months ago she had her first near normal EEG and now we're pretty much back to where we started. 
We're also making a visit to Outpatient Treatment today for a line indwell.  We flush her Hickman daily with Heparin to keep it patent and every three days when I replace her Safe-site, I draw from it to make sure it's still drawing well.  Unfortunately, it stopped drawing last week.  Probably, there's a little clot flopping around right at the catheter tip that's allowing flush to go in, but no blood to come out.  Considering she's had this line for 16 months, we're darn lucky, since they don't usually have that long of a life, but I'm still hoping it can be saved.  Otherwise, we're looking at a replacement.  She continues to have absolutely zero venous access.  Every anesthesiologist and the venous access team has been unsuccessful in their attempts which is why they opted not to remove her line over the winter.  We don't want to be stuck in an emergent situation with no way to gain access for blood draws, anesthesia, fluids, or IV medications. 

Thanks to her new Hugga-bebe, Marissa is enjoying all sorts of new freedoms!  She can actually jump in her Jumperoo - SAFELY and swing in bucket swings at the park.  She still fatigues easily and still throws her head really violently so it's impossible to have her in any sort of seat that doesn't offer full back, neck and head support.  But, with the Hugga-bebe, she's protected and really feels quite proud of herself as you can see from the video (sorry about the quality - my little camera doesn't do such a great job).


Esen is gearing up for the last day of 4K on May 26th!  We went to Kindergarten orientation the week before last and it was crazy to imagine him going there next Fall.  He seems excited, though.  We're going to enroll him in Summer School - they're having a Kindergarten Kick-off class in July which I think will be really great for him.  I'm so looking forward to spending the next few months hanging out with my little guy before he goes off....sniff....to school....sniff....forever....sniff. :(