Tuesday, February 8, 2011


Samantha has been struggling these past two weeks and we are not sure why.  It started with a change in breathing patterns while sleeping about two weeks ago.  At first all we noticed was the breathing changes. Although that is worrisome in and of itself (and we immediately alerted as many of her doctors as we could/set up a pulmonary appointment etc), the first few days it was going on she still seemed to be her typical self.

However, slowly but surely she has become more and more lethargic.  She has just about refused to be mobile these last few days (actually, I think she has refused outright the last two days but she did walk about 8 steps on Sunday night to get to her cousin). Not only has she not been walking, she isn't crawling either. She just sits.  She talks in a whisper constantly, and also seems to zone out a lot, especially after eating. 

Samantha hasn't been sick as far as we can tell. She has no fever or anything like that.  But something is obviously very wrong with our little girl.  Sam's still the same as far as cognition/language (with the exception of whispering rather than talking), so that is a positive.

We have a pulmonary consult tomorrow at CHOP to discuss the breathing issues. And, she has several more appointments coming up as well this month. Sam will also be getting a sleep study done at some point soon. Val and I just aren't sure what is going on or what we should be doing NOW, if anything.  It has been very scary to watch her go downhill so quickly.

The truth is that this may just be disease progression and there is nothing to do for now but wait and see if things improve again.  Or, perhaps she may need some type of assistance in terms of her breathing issues.  (And perhaps that will help with the obvious energy issues she is struggling with right now.)  Or, maybe we are missing something entirely and one of her many doctors will assist in a way we aren't even thinking of yet.

We just don't know.

Hopefully we will get some good insight during our appointment tomorrow at CHOP. 

Until next time,



  1. Oh, sweetie. How very scary. Praying for you and send virtual hugs.

  2. Keeping you all in our thoughts and prayers.