Things are looking good!

Last week we had an appointment with Dr. Moss at Phoenix Children's Hospital.  They did an MRI of Madi's brain so they could see if her shunt was still correctly placed.  Everything still looks good, which was really a relief.  The fluid is being taken more-so on the side that the shunt is on and less on the other side.  It is not causing any pressure to her brain, though, so Dr. Moss is not worried.  I did inform Dr. Moss that we would be moving down the street from him so that any time we are worried, we can just bring Madi by so he can check her out :).  We are almost to the lowest point for the possibility of infection, which was very reassuring to hear.  I had been having nightmares about her shunt failing.  The first nightmare I had was that they had to draw fluid from her shunt and it was a dark brown color.  The second nightmare was that every time I tipped her head, I could hear water sloshing around.  We know that many people have Madi in their prayers and that means so much to us.  We are so blessed to be surrounded with people who love us and care for us!

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!

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.

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!

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.  

I guess it's about time for an update!

Madi seems to be doing well.  She is a very happy little girl and is smiling all the time.  She's starting to learn to coo and makes the cutest little noises.  We took her in the the neurosurgeon for a check-up yesterday and he said everything looks great.  I am always afraid to say anything because I'm afraid I will jinx it.  It's hard because she could have an infection brewing and we may not know for a while.  I watch her very carefully (probably to carefully) but have not seen any indication of infection as of yet.  We go to the pediatrician today and will be able to check her weight and height to see how she is growing.  We met with DDD the other day and are getting her started with an early interventionist and a physical therapist.  We are also having her checked out by a speech therapist.  When we took her to the neurologist she also thought we could benefit from an occupational therapist and is getting us a referral for that.  I think it's awesome that Madi is going to be able to get so much help so quickly!  We are praying that we find great Christian people to work with.  

Madi was getting terrible diaper rashes that I was having a hard time getting rid of.  I put her back in disposable diapers while I tried to clear it and realized it was the diaper cream I was putting on her.  I made my own concoction with vitamin E and some other cream and it cleared right up!  She gets to go back in her cloth diapers now, which look so adorable on her.  None of her pants fit her though because her little butt is so fluffy!

Conner is a great big brother and is making sure his little sister is well taken care of.  He helps wash her in the bath, hugs her, and gives her lots of kisses!