Success!

Today was a whirlwind.  This entire week is actually insane.  Alli and I are scheduled to travel to Memphis this weekend and will check in to the Epilepsy Monitoring Unit and LeBonheur Children's Hospital on Monday morning.  So, there is a lot to do in preparation for our trip.

Today Alli had both physical and speech therapy, labs drawn, and her first g-tube change.  Knowing it was a crazy day of appointments, I had the crock pot going first thing this morning.  Alli is making good progress in both development areas.  She is developing greater trunk strength, tolerating long periods of time on her stomach, rolling to each side, occasionally rolling all the way over, mastering head control, and improving at her prop sitting.  We are going to have her fitted for a stander, which will hopefully help her with weight bearing on her little feet and get her ready for standing/walking.  She's tolerating small tastes in her mouth as well as oral stimulation.  She gets understandably nervous when things come toward her mouth, but once she realizes it is a friendly encounter, she tends to relax a little.  This will be an up hill battle for her.  She's had a number of traumatic things happen through her mouth, so her aversion is understandable.  We passed the g-tube change with flying colors.  The nurse said her stoma (site where the g tube is inserted in to the stomach) looks great and I did a good job taking out the old tube and replacing it with a new one.  I have to say, I was pretty proud of myself and she was a trooper.  It was much less traumatic then I imagined.  We just went in and took care of business.  Coming up over the rest of the week, Alli will have an appointment with Dr. Flamini to discuss her most recent EEG and labs, determine if we need to make any additional medication changes, and confirm whether or not it is still advisable to make the trip to Memphis.  She will also have her synagis shot on Wednesday, which protects her from RSV.

It was a weird feeling crossing the one year mark from when she started having spasms.  At this time last year, we thought we had dodged a bullet.  As we searched for the "why," we had convinced ourselves that the spasms were what brought us to her heart surgery and she would get through initial treatment and move on.  We never anticipated we would still be dealing with this a year later.  As I look at her now, it is hard to tell what her actual neurological status is.  There are definitely signs of development and improvement, but alas, we have the messy EEGs.  So, hopefully our appointment on Wednesday and our trip to Memphis will help to provide some clarity as to her neurological picture and what we can expect going forward.

Samantha graduates to the primary classroom this week.  She will now be in a room with 3-6 year olds.  We are excited to see what lies ahead for her in this new experience.  We have also had great success with the Tot Clock.  We had been making excuses for months about the acceptability of Samantha climbing in to our bed at night.  She would go down just fine in her big girl bed, but without fail, at some point during the night, we would find her at the foot of our bed, or wedged in between us.  A quick conversation with the pediatrician lead us to 1 of 2 choices - 1.  locking her in or 2. finding a tool that would give her a visual cue as to when it was "sleeping time" vs. "awake time."  We opted for the more gentle approach and invested in a Tot Clock.  Best decision ever.  We still have occasional middle of the night visits, but they are few and far between.  It has also been a lifesaver with naps.  She now understands that she has rest time, regardless of whether or not she chooses to sleep, until the yellow light comes on.  Can't say enough good things about it.  Samantha is growing more and more interested in her baby brother.  She talks to him in my belly.  In the mornings she will come over in hopes that he will move or kick and says "wake up little man!  it's your sister, Samantha."  Melts my heart.  She is so excited for him to arrive.  She also likes to confirm that everyone was born and she knows that she was born in the hospital.  She tells me this repeatedly throughout the day.  She has hit a bit of a whining phase, which I'm not going to lie, drives me nuts.  This weekend, as I was enjoying my Michael Buble Ave Maria and other Christmas music, I found myself losing my patience with the whining and scolding Samantha.  It takes a special person to realize the absolute ridiculousness of losing your patience with a three year old with the Ave Maria playing in the background.  All I can do is shake my head sometimes.

Well, that is the update on our end for now.  I will keep you posted throughout our adventure next week.  In the meantime, enjoy the blessings and joy that the Christmas and Advent season bring.  It is a wonderful time of year!