I can't believe it has been 2 weeks since writing an update.  It has been an eventful two weeks.  As of right now, Alli is doing really well.  It feels really good to be able to write that.  We met with Dr. Flamini May 8 to review the results of Alli's 48 hour EEG and discuss medications.  As of that time, she was in modified hypsarrhythmia and still having spasms.  We made the decision during that meeting to pull Alli off of topamax and to put her on depakote.  We started to wean her off of topamax May 9 and started the depakote the same day.  We didn't notice much of a change the first few days.  Alli had been and continued to vomit quite a bit with her feedings.  We were down to feeding her 2 ounces every 2 hours, only if she was asleep, and completely avoided feeding her in the morning.  On good days she was maybe getting 12 ounces of formula.  Not good.  We got the go ahead from Dr. Flamini to speed up the wean off of the topamax and to also pull back on her dose of vigabatrin.  Finally on Sunday (Mother's Day) we started to see some progress.  Alli spent the majority of the day sleeping, but she was starting to keep more food down.  More progress on Monday, she continued to keep food down, and then Monday night started to show some personality.  By Tuesday she was picking up her feet and trying to roll over on to her stomach.  She has been more awake, alert, and in general seems to be much more comfortable.  You can't imagine the relief.  We saw Dr. Blumenthal on Thursday and had a lengthy discussion regarding whether or not to insert a G-tube and get rid of the NG tube.  A G-tube is a more permanent feeding tube that is surgically placed in Alli's stomach.  It is a minimum of a 3 month commitment but would relieve Alli of having the tube attached to her face.  We are going to give it some thought.  There are many advantages to taking this route.  The one big disadvantage is that it would mean another surgery/anesthesia for Alli this year.  We had an unanticipated visit with our friends at Sibley Heart Center on Friday.  I took Alli in to have the placement of her liver checked - what I thought would be a 15 minute appointment.  We left 2 hours later in the clear and off of heart medication...yeah!!  They did an echo and said that Alli's heart function looks good and that she can go without both her lasix and her lisinopril.  We also graduated to a 2 month check up.  Excellent!

So, it is a somewhat exhilarating feeling to think that Alli may finally be turning a corner.  Of course, I have to say we have really intensified our prayers over the past 2 weeks.  My mom was here from May 8 - May 15 and she really kept us focused.  She prayed with Alli and me daily and we invoked every person we could think of to help provide Alli some relief.  In addition, on the Tuesday of Alli's appointment with Dr. Flamini, I started a novena to St. Anthony.  As it turns out, St. Anthony, who often gets credit for helping me find my car keys and other valuable items, is also the patron saint of lost causes and miracles.  So, I started the novena to him asking for him to intercede on Alli's behalf for a cure of her epilepsy.  

Today we ventured out to Summerville, GA to the First Montessori School year end picnic.  It was quite the adventure.  Mostly it was an opportunity for us to test the waters with Alli on the road.  We are hoping to be able to take a couple of trips with her this summer, so we wanted to see how she did in the car, how it was feeding her on the road, etc.  Both girls did remarkably well.  We had a nice time at the picnic.  Samantha was excited to see her teachers, Sanuja and Danielle, and ran around with her friend Salena.  She has really enjoyed school and I think will be sad for the summer break.  They tell us that she likes to stand at the door and greet everyone in the morning.  She not only knows all of the children in her class, but she knows their parents and nannies, as well.  This is most definitely a trait she gets from her outgoing father.  In the car today when we would pass trucks she would say "scuse me truck!"  She also has been expressing her opinion very freely these days.  While driving home from school one day, Samantha clearly did not appreciate Megan's (her nanny) singing and said "Meggie, please stop sweetie."  We also enjoy getting kisses from Samantha.  She has picked up on the 'mwah' sound of a kiss, so now, when she "kisses" us, she gets close to our cheek or head and says 'mshmah.'  We have to be very careful these days as she repeats much of what we say.