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Wednesday, February 18, 2009

Her first laugh

Today Madi laughed her very first (awake) laugh and it was adorable!  She started cracking up, but it scared her, so she ended up crying and laughing at the same time.  I wish I could have gotten it on tape, but we were at physical therapy at the time and I didn't have my video camera with me, or even my phone.  She is growing up so quickly!  I am glad I take every moment I can to hug her, hold her, and enjoy these little moments with her.  She is one amazing little girl!

Monday, February 9, 2009

Her name is Madilynn

Whenever we are in the hospital with Madi I get really frustrated with how the doctors talk about her.  Every morning they stand outside the door to our room and say "this is our myelomeningecele that has hydrocephalus" when they are updating each other.  I just want to scream at them (but instead choose to say it tactfully), "her name is Madilynn!"   Her disability does not definer her-- who she is defines her.  She is smart, beautiful, full of potential, easy-going, cheerful, strong, and very much loved.  Her name is Madilynn Joy Veprek, and she is perfect.

Tuesday, February 3, 2009

We are home!

She seems to be doing better and her shunt is draining, so we're home!!  PLEASE pray that things stay good so we get to stay home :).  Off to take a nap...

The new plan

After being NPO for about 6 hours, they decided to postpone the surgery.  Madi's shunt is now filling correctly and she hasn't thrown up since yesterday (though she also hasn't eaten, so I'm not sure what that means).  The new plan is to see how she does with throwing up.  If she is not throwing up and things look good, we will go home this afternoon.  If she continues throwing up they will re-schedule surgery for tomorrow.  For now we are playing the waiting game to see what happens and how she does.  I am praying that she just had a little bug, like every other baby on this planet gets, so that we can get home and (please, for the love of God) stay home for a very, very, very long time!

Monday, February 2, 2009

Back in the saddle, or is that hospital, again...

So here we are again.  Definitely not the place I wanted to be.  Madilynn's soft spot kept getting full and then empty, full an then empty again.  David and I were watching it closely and then today she started throwing up.  I brought her down to Phoenix Children's Hospital and though her car scan and x-rays look good, Dr. Moss tested the shunt externally and feels that it is not draining correctly and may be beginning to get clogged.  She has surgery scheduled for tomorrow morning to try and determine what the problem is and fix it.  She goes NPO (nothing by mouth) a 3 am this morning.  Right now it's 10:09 pm and they are trying (quite unsuccessfully) to start an IV for fluids and (starting tomorrow after the surgery) antibiotics.  We've been here since about 5 pm so it's been quite a day!  Please pray that they can quickly and efficiently solve her shunt problems and that they don't reintroduce infection.  Please be praying for Conner and his time away from mommy and for me as I am struggling with all of this a bit.  I know God has a reason for all of this, but I really wish I knew it!  The important thing is that Madi is happy, healthy, and safe, and sometimes it's hard to keep that in mind.