Christmas 2012

It's the most wonderful time of the year!  That thought keeps ringing through my head this year. 

While I was in Memphis, Jason and Samantha were battling colds at home.  I had hoped Alli and I would miss out on their germs being so far away, however, they persisted in to that next week and sure enough Alli started getting symptoms early last week...just in time for Christmas.  So, here we are, day 5 in the picu at Scottish Rite, on the bi-pap machine.  I brought her in Friday night when her oxygen requirements were beyond what we could give her at home and she started to show signs of having to work too hard to breathe. 

Fortunately, Jay and Linda (Jason's parents) arrived early Saturday and have been helping us hold down the fort the last few days.  Jason stayed with Alli while I took Samantha to the Christmas Eve children's mass.  Given the number of children and the associated holiday excitement I could relax a little bit about her usual church inspired chatiness and antics.  I went home early Christmas morning and was there with her while she opened her presents.  Jason left shortly after breakfast to be with Alli and we all joined him later.  Samantha played hospital bingo with Jason and me while Linda and Jay spent some time with Alli.  Scottish Rite does an amazing job of bringing Christmas joy to the children here.  Alli had a sack of presents from Santa waiting for her when she woke up.  Dinner was brought in for families.  They had bingo in the lobby for patients and families.  They really do their best to make sure the day is special for patients and families.  We celebrated Christmas dinner later that day with Samantha's friend Gabriela Elisa and her parents.  The girls thoroughly enjoyed themselves and played so nicely together. 

We gave Jay and Linda a break today and they are in Raleigh until Friday visiting with Jason's brother and his family.  We have our hospital routine down pat and are enjoying some individual quality time with SJ during the day.  Then we join her together for dinner at night during change of shift at the hospital.

Alli is doing ok.  She is bummed out about the bi-pap.  The mask is more invasive than her usual oxygen cannula, but is necessary at this point to ensure adequate oxygenation and protection of her heart.  They did an echo earlier this week to make sure her function looked good and all appeared to be status quo.  So, we are grateful for that.  Prior to bringing her in, we were starting to see some progress toward sitting up and propping.  I am hopeful that will return once she is feeling better and off the machine.  It is hard to judge what is going on with her seizures when she isn't feeling well.  She doesn't appear to be having seizures while in bed, but I did notice a couple of head drops when I sat her up the other day.  She is due for another eeg next week (assuming she is well enough), so we will address the head drops then.  If there hasn't been sufficient improvement in the eeg, then we will explore a couple of other options - either the ketogenic diet, or a drug called Onfi (clobazam).  We have another infantile spasms friend that has had some success with Onfi and are hopeful that if the depakote/vigabatrin cocktail doesn't knock it out for Alli, that the Onfi will do the trick and we can hopefully put this behind us.  In the meantime, we are trying to be patient (and persistent) as she works her way through this.

We are looking forward to the arrival of my parents (weather pending) next week.  It is so nice that Samantha will be able to spend time with both sets of grandparents over her holiday break.  She always enjoys the special treatment and extra attention that only grandparents can bring.  Grandpa John's to-do list is growing by the day.  Tile to be fixed here, painting there, ceiling tile down the basement...

We hope everyone has a happy new year.  We are looking forward to see what the year will bring.  We are anxious to meet our new little guy and get his room set up in the coming weeks.