Mommy wow, I can sit by myself now!

Playing ball with Daddy.  I love how she anticipates, such great motor planning skills she has.

I also love how my photos will no longer contain my stretched out foot in the background just in case she falls!

MADDOX IS NOW SKITTILING - A COMBINATIN OF SCOOTING, SITTING, AND CLAPPING!

Maddox is so excited she can sit up and see the rest of the world.  She has not stopped smiling since she learned how to do this.

Daisy and Maddox have a very special relationship, they seem to understand each other.  Daisy is Maddox’s biggest cheerleader and Maddox is always so motivated when Daisy is around.  This video shows the first time Maddox ever decided to move forward and it was, of course, to receive a Daisy kiss.



******VIDEO HERE******

Clap clap, yeah, and pat-a-cake are the magic words in our house these days.  She loves playing games.  The fact that Maddox can clap is something most parents take for granted, it is simply another milestone.  

For us, clapping when asked means so many things.  We now know that Maddox can hear, is actually listening to words, and can process language as well as understand what gestures go with language.  In addition, shows her motor planning skills to demonstrate the gesture.  

Yes, a simple clap has all these things.  No wonder her mommy cried when Maddox brought both hands together while playing pat-a-cake.  Another hard earned milestone bites the dust! 

Scott and I are soon going to be planning the new milestones that we want accomplished by Christmas.  It’s bittersweet I guess.  Last year at this time we were talking about how our new baby would be walking, saying mama and dada, throwing toys for the dogs, and pulling the ornaments off the tree.  We talked about buying fancy electronic gifts for each other.....

We would never have dreamt that our greatest Christmas gift of all would be a crawling baby.   

Christmas is a few months away (even though Walmart doesn’t think so), I must remind myself to stay in the moment.  It’s tough because I am such a planner.  But, for now, we celebrate the fact that Maddox continues to thrive, understands language, and is sitting. 

We also celebrate the fact that Sito is coming to visit this week! 

Oh the plans that we have.....  she will be so surprised.

Scott has a new football partner!

I always comment about when you hit bottom, there is nowhere to go but up.  After a terrible two weeks we decided to have a spontaneous family weekend.  It started off with Friday night lights as we ventured to Maddox’s first football game.

If you know Maddox’s history, she is a social butterfly.  She loved watching all the high school kids walk by.  We stayed for the first half of the game and then it got chili.  Although, before we left for home, we raided the concession stands buying a hotdog, popcorn, candy, and a hot chocolate for the ride.  

Saturday morning we got up early and drove to the apple farm.  Daddy’s favorite part are the doughnuts, mommy’s favorite part is the hot cider, and Maddox’s favorite part is the petting zoo. Ok........so mommy likes the animals  too. 

We had a wonderful time but nothing tops the smiling llama. 

After all our work (aka apple baking and doughnut eating) was done, Scott and Maddox curled on the couch to watch football. 

Daddy couldn’t peel his eyes away from the tv but Maddox never misses a chance to be photographed,

Happy lazy weekend everyone!

Maddox’s assessment for plagiocephaly treatment.  She loved her temporary polka dot hat.  Actually, she loves every minute of Ann Arbor.  She talks to the doormen, the patients, the cooks, the doctors, the receptionists, the nurses, the housekeepers, the statues, and my list goes on......

There are so many doctors that I can’t even remember them by name anymore.  Quite possibly so many that I can’t even recall them by face. 

In the past six months we have visited the:

Cardiologist in Alpena
Cardiologist in Ann Arbor
Genetic Counselor
Geneticist
Audiologist
ENT doctor (and her Resident)
Physical Medicine and Rehabilitation Physician
Orthotist
Speech Therapist in Ann Arbor
Infant Home Teacher
Pediatrician
Family Practice Physician
And soon to come is school based PT and SLP

14 doctors, 14.  All with the best interest of Maddox in mind but it truly gets overwhelming.  It’s no wonder these parents that I work with get so stressed sometimes that they start kicking people out of their homes.  I understand it now, I really do.

I hear lots of parents say that I have it good, I am so blessed, or that they have always wanted to care for a child with Down Syndrome. 

I will be the first to tell you, at this very moment I don’t feel so blessed.

My car has more miles than I planned on putting it through, my vacation money is now spent on travel accommodations to and from medical appointments.  All of the state agencies tell us we make too much money to get the help we need.  To make matters worse, I am on doctor overload.

Navigating the medical community is like being a mouse in a crazy difficult maze.  You scurry around, check for secret passages trying to find your way out of this mess, all while someone hovers over and snickers every time you fall for the bait all the while you are consumed with finding an exit to freedom.   

In the past two weeks we have gotten up at 3AM, driven three and a half hours for five appointments.  That does not include the local appointments and all of the 6 month follow ups that were just scheduled.  Some places want several 4-6 week follow ups.  Some want 1-2 year follow ups.  I can’t keep them straight anymore.  I thought I was an organized person.  And I really was, until I became the designated U of M personal secretary.  I feel like all I do is take phone calls from them, reschedule appointments for them, find out what days the doctor is working, switch appointments around, etc...  

I do all this, while trying to live a normal life, get up for work, take care of other peoples sick children, try to remember to make it to my own dentist appointments, or heaven forbid find some time to throw a ball for my firstborns (Copper and Daisy).   

Today I am simply on overload.    

I think I have it tough but the answer to that is, yeah right, not really.  Tomorrow I go back to work.  Multiply the stress of my problems by 60.  Yes, there are 60 kids and parents that I work with who are all dealing with the same things I am.  

My job is to help these parents navigate that maze we call medicine finding supports for their children just as I am doing, day after day, after day, after day.  Easy recipe for burn out.  

I am trying to decide what needs to give, which way to bend to make this all work because not only do my students need me, my family needs me.

Maybe this is a dose of new mommy syndrome, new priorities and no memory, but all of the sudden multitasking doesn’t seem so easy or exciting anymore.  

That was my bum news.

The good news is that we learned today that Maddox is hearing, in fact, she is hearing much much better than her mommy hears!  We also learned that the ENT systems are currently functioning well. Check the medical page for more specific updates.

That is the scoop for now.  In two weeks hi ho hi ho, it’s off to Ann Arbor we go......again

I just heard there might be a surprise visitor for our next appointment and that would make my trip totally worth it

Eight years ago today:

Scott and I had our first date.



Eight years ago today:

Scott had much MUCH more hair!

Eight years ago, Scott and I went on our first date.  It went a little something like this.....

He drove 2.5 hours up north from Midland, we hopped in the car and drove 2 more hours west to Mackinaw City.  We spent the day walking, shopping, eating pizza at Mama Mia’s, and enjoyed the laser light show on a blanket that evening. 

It was the most perfect day and I fell, I mean I fell hard.  Scott is my everything.

Tonight as I write, I am reflecting on all that we have accomplished in our eight years with our health, our jobs, our schooling, our home, etc...  We are the best we can be because of the support and unselfishness ways of each other.   I am proud to say that there was never a single moment during this time that we questioned our desire to grow old together.

I am thinking about who we were when we first met to who we have become.  Our love has transformed from the simpleness of infatuation into an inseparable bond. 

The first seven years were incredibly fun.  We traveled together, tried new things, taught each other new sports, and was even spontaneous!  This year, we had to endure the deepest of all pain together, something that was destined make or break us.  We have chosen this path, the right path, this life as a couple, and yes we will conquer.  Throw us your fastball and your curveball, we are ready, when we play together, our batting average is a thousand. 

When you hit rock bottom, the only way out is up.  Step by step we help each other make the climb and someday, when our family is complete, we will see the light again.

There is unspoken anxiety about building a family but comfort knowing that we can, and we will be built.  Once complete, I am confident we will be able to step back and look at how lucky we really are.

So, for the record. I do have the greatest husband.......EVER!  

It has been an amazing eight years.  

With that, here is a little humor for today since it is opening day of the football season (which by the way, if you are looking for my husband, he has the remote in his hand and is switching from ESPN 1 to ESPN 2 to ESPN 3.  Sometimes he gets really sneaky and when one game ends, he flips to another game that has the same jersey colors so I think the game he ‘wants to watch’ just  seems to last forever).

The first photo is Maddox dressed by Jamie the day before football season and the second photo is Maddox dressed by Scott the day of football season.  

Will Maddox will be mama’s girlie girl or daddy’s assistant coach?

KRISTIE
Here's to 88 more years of love, laughter, and happiness!  I remember this day oh so long ago.  I'm so glad you found your soul mate!
SATURDAY, SEPTEMBER 4, 2010 - 10:40 PM


ANONYMOUS
would you look at that.  the dude actually did have hair on his head at one point in his life!!
SUNDAY, SEPTEMBER 5, 2010 - 11:16 AM


THE BIG KAHUNA
why cant she be both.  she could help daddy coach girls softball.
FRIDAY, SEPTEMBER 24, 2010 - 12:31 PM