Tuesday, May 10, 2011

That & That & Everything In Between!

This is another one of those posts that has a little bit of everything in there.  A little bit of early Spring fun, 1st haircuts, lily's 2nd birthday, the American Heart Association Heart Walk and some other random happenings...here goes...

I finally decided after 3 1/2 years that it was probably time to give Ellie her first haircut.  We've never cut her hair before, not even a little trim and she was absolutely against having anyone cut her hair.  We had talked about this for about a week before we actually had her appt and most nights she would tell me (again and again) that she did not want her hair cut.  The day finally came and we had scheduled appointments for both of the girls since Lily's hair was looking a little "mullet-ish" in the back.  The day of the appointment came and I was figuring I would have to hold Ellie down in the chair and Lily would be jumping at the chance to sit up there and have someone cut her hair!  Much to my surprise it was the exact opposite.  Lily sat in the chair with a sour look on her face and Ellie just thought she was a princess up there having her hair done.  She even wanted it curled!!

We have been waiting very patiently for spring to get here and Mother Nature, more than once, has teased us.  We had some absolutely beautiful days in March and we took every opportunity to get outside when we could.  I got the chance to take the girls down to the flood wall to let Ellie ride her bike and take Lily for a ride in the stroller.  My mom got the chance to take the girls down to the creek and let them throw rocks in and let them wade in it a little.  I have a feeling we will be spending plenty of days down by the creek this summer now that the girls have had a couple chances to play down there.  The girls absolutely love the water so they have been dying to get out the water table ever since they spied in in the garage.  After much anticipation while I was cleaning it up, we finally got it filled up and the girls had a blast...and they were soaked by the end.  Nevertheless, they had a great time and have been asking to get it out again lately.  Thankfully they haven't spied the pool yet!!

On April 16th, our family attended the Loras College Dance Marathon for the 2nd year.  This is such a neat experience.  Each miracle child has a poster hanging on the wall showing pictures from their hospitalization and what they look like now.  Each child gets to "request" a song to dance to during the "Family Hour."  Of course Lily danced to the Hokey Pokey!!  They have snacks, crafts, toys, video games, etc for all of the Miracle Families to enjoy.  This year the girls were actually brave enough to go up on the stage and dance with some of the Loras College students.  For as shy as Ellie is, I was absolutely shocked that she got up and danced in front of people.  I wish we could have stayed later to see more of the Dance Marathon but the meltdowns started and we split!!  This year, Loras College Dance Marathon raised over $129,000 for the Children's Miracle Network and the University of Iowa Hospitals.  For those of you who have stayed in Iowa City for a while, the tokens that you receive for the vending machines are funded by this Dance Marathon.  We are forever grateful for all the work the college students do to fundraise for such a great cause!

On April 22nd, Lily turned 2 years old...where the heck have the years gone?  It is so hard to believe that two years ago today I was sitting in a hospital room with her during her recovery from her 1st and 2nd open heart surgery.  She has grown to become a fiesty, EXTREMELY independent, cuddly little girl!  I can't wait to see what the future holds for this amazing little girl!  I am sure she will do great things!

We celebrated her birthday with just family this year.  Everyone came over for pizza, breadsticks and cupcakes.  It was nice enough that we could spend some time outside and the kids got to ride the bikes.  Lily loved being the center of attention and she was ready to blow out her candles. And no birthday is complete without the ritual smashing of the face into the cake by Uncle Jake!!  Since her birthday she has been singing "Happy Birthday" on a regular basis!

This past weekend was the Dubuque County Heart Walk!!  Team Lily made a strong showing with more than 35 people there to support us and walk with us!  This year and last year we sold t-shirts to help raise funds and for the second year in a row sold over 100 t-shirts.  We cannot thank our family, friends, co-workers and even my students for all the support they show us each year at the Heart Walk.

All week long I was looking at the weather and kept seeing that there was a chance of rain, however, it was absolutely beautiful.  The sun was shining, the temperature was just right and the wind wasn't too bad!  The weather was PERFECT!!  After the walk we headed to a nearby spot right on the river for some lunch and relaxation in the sun.

I have to leave you with a picture of Lily's new obsession.  She recently has taken a very strong interest in having her hair done (she tells me 2 ponies everyday), having lotion and make up put on and drying her hair!  All of the above she also has to do to her babies...did I also mention she is BIG TIME into playing with her baby dolls.  Whatever I do to her, such has putting lotion on her cheeks, she then has to do to her babies!  The latest is drying her baby's hair...even the bald babies!!

One last thing...please take the time to say a little prayer for Ellie Jo Schmitt.  Ellie is recovering from her Fontan surgery in Iowa City.  She is starting to make great progress and I pray that things continue to improve for her.  We will always be thankful to Ellie's mom for introducing herself to us as we were waiting in Pediatric Cardiology for our very first ECHO at 20 weeks!  And remember those adorable calendars from last year...Ellie's mom put those together!!

Hope everyone is enjoying the great weather...hoping these next 17 days fly by!  Summer vacation, here we come!!

The Duves

Thursday, February 10, 2011

Could It Be?

Could it be?  Has it REALLY been 3 months since I last posted?  Where has the time gone?  Since my last post we have celebrated Thanksgiving, Christmas and New Years...and here we are, just about ready to celebrate Valentine's Day.  What does Valentine's Day mean to you?  For most of us it means celebrating with a romantic dinner, the giving of cards and presents and spending time with the one we love!  Since Lily was born though, Valentines Day, February 14th, has taken on a new meaning.  February 14th is the end to a week of raising awareness for Congenital Heart Defects.  Every year, from February 7th through the 14th, parents and families of children born with a congenital heart defect do everything in our power to get the word out.  We ask for proclamations from our states and cities, we hand out stickers and pamphlets, we flood Facebook with messages of awareness, we post stories about life with a child who has a congenital heart defect. How many of you knew what a congenital heart defect was before Lily was born?  I'm sure I had heard those three words in passing, but I had no idea what they meant.  Those three words changed our lives!

Although many congenital heart defects are detected at a 20 week ultrasound, many are gone undiagnosed until after birth...some too late.  Here are some things you might not know..

*  Congenital Heart Disease is considered to be the most common birth defect, and is a leading 
cause of birth-defect related deaths worldwide.

*  Despite the fact that CHD affects approximately 1.8 millions families in the U.S.,  a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

*  Congenital Heart Defects affect nearly 40,000 babies each year in the United States alone.

*  Nearly 4,000 babies born with a CHD will not survive their first year of life.

This past weekend Mazzuchelli Catholic Middle School held their 1st Annual Mini-Dance Marathon.  Loras College in Dubuque does a 12-hour dance marathon in April, and as an extra fundraising opportunity they invite local schools to host their own dance marathon.  Schools all vary in how they put their together.  Some have fun days with activities, others have dances.  Mazzuchelli celebrated Catholic Schools Week with a Penny War between the grades!  This is where we did the majority of our fundraising.  The week culminated with our mini-dance marathon held on February 4th.  The Loras College students helped to get the students motivated, they helped sell pizza, gave out prizes, etc.  We could not have done it without their help.  And the kids who came had nothing but good things to say.  They had a blast dancing for the kids and the Children's Miracle Network.  All in all, they raised over $2600!  How awesome is that??!!  I couldn't be more proud of my students, my school and the dedication that many of our kids put into this to make it a success!

Since it has been three months since I have last written, we have a lot of little things to share, some good and of course some not so good.  To start with both girls have been really healthy this winter (knock on wood).  We've had the runny noses and coughs but nothing too serious.  We think Ellie had a slight touch of the flu about a month ago, but other than that nothing that required any Dr visits.  However, we have been to the Dr for other reasons.  Since last May, we have been taking Ellie in to see Keystone (our Area Education Agency about every couple months.  We were concerned about her speech and her pronunciation.  I never thought about the connection to her hearing.  They did a hearing test and she passed some and failed some.  This last time we were in she refused to do any of the tests but they noticed that her ear drums were not vibrating like they should so she was referred to our pediatrician who said she has fluid build up in her ears.  They then referred us to an ENT where she again refused to participate in any of the tests with the audiologists.  They looked at her ears again and both were 100% filled with fluid that looks as though it has been there for a while.  He also noticed that her adenoids and tonsils were extremely enlarged.  That might explain why we can hear her breathing when she sleeps from down the hall!  So the plan is to have tubes placed in her ears to drain the fluids and to remove her adenoids.  We are hoping this solves her hearing issue which will then lead to better pronunciation in her speech!!

On a more exciting note, I am going to be an aunt again!!  My brother and sister-in-law are expecting in July. They already have one little girl, Emmy who is 2.  My parents have three granddaughters so secretly I am sure they are all hoping for a boy, but really as long as the baby is healthy, everyone will be happy!!

Lily's next cardiology appointment is in April.  We get to do an unsedated echo since she did fine the last time.  That is nice since it means we don't have to leave Dubuque at 5:30 to get there!  She will also have chest x-rays and an EKG.  We are hoping that her saturations remain in the mid 80's.  The lower they go the closer we are to her next surgery and we hope that she can wait until after she is 3 years old.  Please pray that things have remained stable for her over the past 6 months.  We haven't noticed any changes in her but that doesn't mean things haven't changed!

I have to leave you with a short video...if you know Lily at all, you know she LOVES food!  So when she is falling asleep at the supper table you KNOW she is tired...Enjoy!!

The Duves