Carpe Diem

It is cheesy, but it is the truth.  Since things have started to steadily improve with Alli we have taken advantage of every opportunity we can to get the girls out of the house and get ourselves out of the house, as well.  Our weekends have been full of good quality family time.  We've taken the girls out to eat, gone to the pool, entertained friends, and managed to have a date night without stress.  It has been wonderful.  However long it lasts, it feels like a gigantic weight has been lifted from my shoulders.  We still give Alli meds 3x day and she still has intermittent spasms (and a cold right now), but she hasn't vomited in over a week and she is making developmental strides every day.  This weekend we have noticed her being much more vocal.  She is definitely trying to communicate with us, which is something we haven't seen from her since before her surgery. She continues to try to roll over.  She rolls consistently on to her side and will hang out there for a while, especially if I have her baby einstein turtle in front of her, but she hasn't been able to make the full rotation.  It will happen any day, I'm sure.

Samantha has been venturing out for new experiences, as well.  Last weekend I took her to mass with me for the first time in over a year.  I was nervous about how she would do, as she demonstrates all of the most charming 2 year old qualities these days - tantrums, high pitched squealing, throwing herself on the floor, etc.  To my surprise, she behaved very well.  There was a moment of awkwardness when we walked in and got settled.  She looked up on the alter, pointed, and exclaimed "King Cole!"  She has a Wee Sing dvd at home called King Cole's Party and she evidently mistook the priest for King Cole.  It's possible we need some more time reading "the Child's Guide to the Mass" and less time with King Cole's Party.  Lately she has taken to calling us by different names.  Mine aren't so exciting, however, she lovingly refers to Jason now as Jason Jay and also Baby Daddy.  Baby Daddy came from dinner one night when she was naming everyone at the table and their relation to Alli.  For whatever reason, Baby Daddy stuck, and now she uses it on a regular basis.  She has also developed an affinity for shopping.  This week, before school one morning, she came up to me as I was standing at the kitchen counter, tapped my leg, looked up, and said "Go to Target sweetie?"  If only I could have scooped her up and driven her right over there.  It melted my heart.

Jason and I finally made it out together.  We ventured over to Local Three on Saturday night with our good friends.  It was so nice to have a night out.  It was great food and great company!  I had to cancel plans with him a couple of weeks ago to see the Zac Brown Band because Alli was feeling so miserable.  So, it was especially rewarding to be able to go out and know that she was just fine at home with Megan. Though, I would have loved the concert, I think I would have been distracted the entire night.  I felt much more comfortable leaving on Saturday.

This week will be a busy one.  Alli will start PT with her new in home physical therapist, Brittany, on Tuesday.  Samantha has her end of the year party on Wednesday morning.  Alli has OT on Thursday.  We also need to work in a weight check with Dr. Blumenthal and blood work to see if she is having a negative reaction to the depakote.  Depakote can cause liver toxicity, so her blood work will be managed regularly.  Finally, Samantha has her last day of school on Friday.  It has been such a great first year at Montessori.  We're excited for her to go back next year and work her way in to the primary classroom.  She will get to return in the fall as the Big Fish in the Toddler II pond and then will hopefully move around the middle of the year to the Primary room.

There have been many prayers of Thanksgiving over the last few weeks.  I continue to say prayers to St. Anthony as we work through the treatment for infantile spasms, but we mostly focus on prayers of thanks for how far Alli has come and the peace that has taken over our house.  Thanks so much for everyone's continued messages of support and prayers.  They have been amazing and I'm certain give us the strength to get through days that seem never ending.

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.

The results are partially in...

Just a quick update - Dr. Blumenthal called this afternoon to let us know that Alli only has mild reflux...yeah!  So, we have ruled out reflux as the cause of her vomiting and we have temporarily eliminated one of her medications.

Will let you know when we hear about her other tests.