Day 9 – May 6th, 2011

Today we are officially off work for a bit, so we were able to just hang with the girl all day.  Lola is a pretty happy baby given the amount of steroids she is on.  Rob and I were saying this evening that she is actually the happiest she has ever been.  I attribute it to the fact that she is finally full (thanks to the increase in hunger side effect) and she can now see.  It has been amazing to watch her try to focus on something and actually blink when you run your hand past her eyes.   We never used to put the toy part up on all of her baby gadgets because she wouldn’t look at them.  Well that has changed as she is...
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Day 8 – May 5th, 2011

Check out who’s digging tummy time!  Since Lola has improved her neck strength, she has been much more open to hanging out on her belly.  Today she had three seizure clusters although they were not long nor was she in a catatonic state when they took place.  One happened while she was in my arms and I wish I could just make them go away altogether.  I know that’s what we are working toward, but I just want to see my baby healthy already.  She looks happy though and that’s all that really matters....
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Day 7 – May 4th, 2011 "Lola’s Four Month Birthday"

Is that seriously my kid?  Look at those cheeks!  So today Lola is four months old.  Everyone says time flies by, but for me it really hasn’t.  Perhaps because I spend all day every day with her and I have watched each new stage of her life firsthand.  To be honest, I can barely remember four months ago.  Recovering from having a baby, learning how to be a mom and trying to maintain some sort of normalcy is enough for me to have momentary memory relapses.  I know people say they want their babies to stay babies, but I love watching Lola grow up.  I embrace each new stage and the challenges that go along with it.  This past week has by far been the most challenging, but...
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Day 6 – May 3rd, 2011

Lola is over 27 hours seizure free!!!  We are elated, but also realistic.  We know that she has a long road ahead of her, but I can’t begin to explain what this milestone means to us.  Thinking back to just one week ago where she was physically (having several seizure clusters daily, not being able to focus her eyesight, could barely lift her head on her own) is just plain remarkable.  The pictures above are something we have never seen before.  Not only is she looking at these toys… she is reaching for them.  I couldn’t believe my eyes when I saw it.  It was a t-shirt and a diaper kind of day as it was swelteringly hot.  I made Lola a bed on the floor in the...
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Day 5 – May 2nd, 2011

What were we doing at 4:00 am this morning?  Anything except for sleeping!  Seriously though… Lola looks like a completely different baby from even just a few weeks ago.  I’m in utter shock as to how quickly this Prelone has spiked her increase in hunger.  You can tell that she is a bit bloated as well which is another side effect from the steroid.  It’s interesting because when we would put Lola on her changing table before she would always keep her head to the side.  But I’ve noticed the past few changings that she is actually looking up.  I keep wondering if I am just reading into too much now, but I honestly don’t think that’s it.  I am seeing tiny microscopic changes with each day that...
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