Raising two special kids!

Last Saturday we went to the Raising Arizona Special Kids day at McCormick Ranch Park. We all really enjoyed ourselves and it was awesome to get a free day out to have some fun.  Being there just reiterated how blessed we are.  Compared to so many other Children, Madi's challenges (I always struggle with finding a word to put there.  I guess technically it's a disability, but that just sounds so inhibiting.  

On another note, Madi had a check-up with Doctor Moss at Phoenix Children's Hospital this week.  Her head measurements are coming back normal, her fontanel feels good, and her shunt appears to be working correctly.  We had a few really big bumps in the road in the beginning, but we are hoping to be past those now.  Dr. Moss said that once you have a shunt working well for about two years, you are good to go!  We are praying that this shunt is the one :).  Madi is continuing physical therapy with Gail at Aspire therapy and is doing well.  I am looking for an in-home physical therapist, though, and hope to have one soon.  We love gail, but the 40 minute drive, one way, to see her every week is getting old fast.  Research shows that children under 3 do best in their natural setting, so ideally, that's where we would like to be.  Madi also started receiving services from a developmental specialist.  She's getting a lot of help and is doing great!  She's a very happy, healthy, and strong little girl!  

I don't update about Conner much, since this blog was designed to keep people up to date on Madi, but he is doing very well also.  He is getting his last set of molars (for a while) which has made life interesting.  He was having a really hard time sleeping so our nautropathic doctor, Dr. Kail, at Arizona Advanced Medicine has us giving him small doses of melatonin and it's helping so much!  Hyland's Teething Tablets are a God-send too!  I'm in the process of making Conner a cape with Spiderman on it and he's thrilled!  He's a huge Spiderman fan!  Right now he's a fan of Spiderman, the letters 'o', 'a', and 'i', and the color blue.  He's a really smart kiddo and nothing gets passed him!  He is such a neat little boy and he makes life fun!

God blessed us with two beautiful, fun, amazing children and we are so thankful for that.  We truly are raising Arizona's special kids!

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.