Grandpa meets his grandaughter...

When we were told that Preslie has Down Syndrome shortly after her birth, it was one thing to make that commitment as husband and wife that we would give Preslie the best life possible and that no matter how hard, we knew it was meant to be. But it was another thing to start making the phone calls and let everyone that we love and care about, especially family that their lives would be changed too. Once we were able to hold our angel, we knew it would be OK and that despite the health and developmental challenges we would be forever blessed with Preslie as a special part of our family. However as I dialed those numbers, aunts, uncles, friends near and far, you aren't quite sure what response you'll get. We heard everything from "I am so sorry", to "That is awesome". Preslie's grandma (my mom) was in our hospital room the night we were given the news so she was with us through it all, from the beginning. She was then able to look into little Preslies eyes and get that same confirmation that it would all be OK.
Then there was the phone call to Preslie's grandpa, my father. He was not in the room, nor even in the same state. The phone call was bright and early in the morning and he had no idea what would be coming. His responses were very supportive and kind, but one never knows what goes on beyond the words...churing deep in the mind and heart.
Well...
Preslie Ellen was finally able to meet Grandpa G, who had only seen pictures through email and could hear her squeeks and sounds over the phone. He could finally see what we all had since the first moment we held her...it's all OK and we wouldn't want her any other way. So this blessed Christmas season Grandpa was able to bond with his new granddaughter...I don't think it could have been any more perfect. The photos speak for themselves...

He had her smiling so big...I think her first laugh, 'almost' came out!

it was a very hard good-bye...hopefully it wont be too long until next time!

This wonderful Christmas Season...

As we went through this holiday season, life became very simple for our family. The simplicity began about 3 1/2 months ago when one of Heavens Angels came to our family. We could no longer put so much energy into worrying about our struggling company, or buying a 2nd car, or even how we were going to survive financially through the winter. Life became less about money and the things we have no control over and more about family...putting our energy into making sure our baby girl had all the right care, the best doctors and would be healthy and strong. As well as making sure our boys felt as loved and as important as ever amidst the chaos and worry.
Through this new found life, many angels filled in those gaps of financial worry and holiday stresses. We have never felt the love and compassion of strangers and friends alike like we have this year. We have been overwhelmed with the kindness all around us. When people embrace us and our struggles like they have without knowing anything about us, it reminds us that heaven isn't too far away and that angles walk among us every day. The gratitude that fills our hearts after this blessed holiday season is overwhelming at times and hard to put into words. To those people that helped make sure our Christmas was perfect...our deepest thanks is not enough to truly show the joy in our hearts and the love we have for all of you. Santa made a special stop by our house!

Preslie finally finished her latest round of anti-biotics and hopefully her body will start operating normally again as it rids itself of all the medication she has been on for so long now. During these last couple of weeks we have experienced an array of worry and concern as Preslie has struggled to breath many times and has choked at various times throughout the day. CONSENSUS...reflux. It is something that we are very familiar with as both my boys fought months of that as well. We were cautiously optimisitic that she would be the 'lucky one' and not have to suffer through that along with all the other health issues. Unfortunately, her luck ran out and now she is on medicine 5 times a day to help control the reflux that causes her to choke. So far, so good. Apart from dreading putting any more medication in her body, it seems to be doing its job.

After all the doctor's appointments were done, medication picked up and the last gifts wrapped, we were ready to relax with family in a log cabin nestled in the woods and enjoy a beautiful, white Christmas. The boys giggled and cheered as they opened each gift Christmas morning and Preslie was nothing less then radiant in her beautiful red Christmas dress. As the wind billowed outside and the snow blanketed everything around us, we were able the enjoy all the holiday festivities....juicy deep fried turkey with all the fixins, a warm, bubbly hot tub, games filled with laughter and healthy competition and delicious decorated cookies, pies, and yummy snacks. In addition to all the usual holiday fun, we frequently reflected on the love of Christ and the profound impact that the 'true meaning of Christmas' has had on our family. His love for us has never been felt more abundantly all around us then it has in the last few months. We know that He did the greatest thing for us, all mankind, and it all began with his birth so many years ago. Merry Christmas to all our loved ones near and far...to those we've known for many seasons as well as those we've never met. We hope your holiday season was as blessed as ours.

Antibiotics...again!

After a few weeks of our little angel struggling to breathe, coughing, choking and not sleeping, an docs saying it was just viral so there's nothing to be done, we finally took her back in last week. It's no longer viral, but an infection in her ear, throat and sinuses...so they were able to put her on antibiotics yet again. The poor girl has spent over half her life on antibiotics, but if they work, then bring 'em on, I guess! Already we've seen a big improvement in her mood and breathing, but she's still not sleeping good, so exhaustion has set in. She's up most of the night and very restless, but through all of this, no crying...our little angel is so strong. We go back to see the doc on the 23rd, so hopefully she'll be healthy for Christmas.

Despite being sick...again, she certainly knows how to do 'cute' very well! :)

Happy Birthday baby 'J'

I have spent so much time blogging about Preslie and all the stuff to go with it, but today is Jaden's day! Happy 3rd birthday big boy! He is our 2nd child and such an amazing little boy. He and Kyler are about 3 1/2 years apart and couldn't be more different. They are the best of friends most of the time even though they know how to fight like brother's do best!

Jaden was born 3 years ago today after a semi-normal pregnancy and c-section. He was a little bit smaller then Kyler at 7lbs 90z but was also almost 3 weeks early. When he was very first born I thought I had Kyler's twin, but within days of birth he had changed so much and today you would know that the baby boy I had on Dec. 11th, was the same little boy today. He is a beautiful little boy that looks so much like his daddy when he was a baby. Jaden has blond hair and HUGE blue eyes and a smile that can melt your heart in a split second. He also has a HUGE attitude to go with that captivating smile. He is very strong-willed and is the first child to ever blatantly tell us 'NO' without hesitating. However, despite the defiant little spirit at times, he will be the 'class clown' and keeps us laughing all the time. He can turn a bad day around in no time and will warm you heart as he walks through the house singing 'Twinkle Twinkle' or 'I am a Child of God.'

He loves to sing, loves chocolate milk and his world revolves around 'tractors'...backhoes, track hoes, graders...he knows and loves them all. He often sleeps with the machinery trader when Kurt gets new issues in the mail and we have about 15 tractor drawings floating around the house at any given time. He is such a joy to our family and makes me so grateful for motherhood every day. So today is for you J-bear...Happy Birthday and thank you for a wonderful 3 years sweet boy!

Test results...to wait again

Finally heard from Dr. Frazier this morning...

he went over her blood work as well as looked at her neutrophils under the microscope. The neutrophils looked 'normal' under the microscope, which is good. However, her total WBC was a bit low. What does this tell us?? Absolutely nothing at this point! So....we wait, again!

We will re-check her blood in January after the holidays and see if her counts have come up. If not, then we go to plan B, which I really don't know what it is, but I imagine it will be more tests. If her counts are normal, that is a good sign, but not an absolute. The doctors are still concerned that Preslie had such a strange infection, that kept all the doctor stumped at such a young age. So if they are normal in January, then we wait...and if she gets another odd, random and rare infection, then we start tests. If not, then we assume she is good! I am finding that with blood disorders, according to the doctor, they can be very hard to diagnose and there are so many things that can go wrong with our blood, so it's quite a process to actually diagnose someone with a blood disorder. Anyway, so for now we try not to focus on what 'might' be wrong with our baby girl, but enjoy these wonderful holidays, enjoy our family, express our gratitude every day that she is home with us and relatively healthy!

She is fighting some sort of cold/sinus thing and we actually almost took her down to Primary's last night as she had a hard time breathing and at one point was gagging and gasping for air, but apart from keeping me up all night, she is doing ok this morning.

So until the next test, next poke and prode...we will enjoy the warmth of our home as we watch the snow fall outside and listen to the sweet sound of Christmas music and thank our Father in Heaven for our angel this year that has taught us the 'true' meaning of so many things!

Happy 3 months, baby girl!!!

How fast time flies...our baby Preslie is now 3 months old. Happy birthday baby girl...it's amazing how much the human spirit can endure, learn, hope for and overcome in just 3 months. I am so thankful for the last 3 months...the most difficult, special, precious moments of my life. I have entered into a world that has been all around me all this time, but I had no idea it was there and it was such a wonderful world; even though it can be hard, dark and very scarry at times. It's a beautiful world, with so many beautiful people...people hundreds of miles away, and people right in my own community. People that I haven't even met, but people I have grown to love. Those that in the middle of their own struggles and dark moments, check in on precious Preslie and always let us know they are there and praying for us too. I am reminded again how beautiful this world can be and how tests and trials can not only bring out the best in people, but can bring us back to the simple things in life...when a simple smile can melt your heart and friends and family can make the worst of things pass by without breaking your soul. Without Preslie in my life, I would not be able to live among angels, everyday...so for all of this, our sweet angel, Thank you...keep getting strong and stay healthy so there will be many more months to come!
For now, we wait patiently for test results and just appreciate everyday with all of our children, who bring so much joy into our lives. And while we wait and find the joy in the simple things, let's not forget the other angels out there that need prayers too...baby Zoey-you fight hard sweet baby...and baby Presley in Texas...you are beautiful and we pray for your continued health and strength...and to all the others...keep fighting, keep smiling and keep blessing the lives of so many!

...and we wait...

Well...not too much to share today. We met with the oncologist...spent FOUR and 1/2 hours at Primary's. I do have to say that when we walked into the hemotology/oncology office, my heart sunk and I had to fight back the tears. It is a heart breaking place...full of hope, prayer, but so many heavy hearts. it was a place I never imagined I would have to take one of my children, but the new world of ours if full of those 'never imagined' places. Anyway, we march on together, full of hope and optimism. So anyway...

He is NOT thinking Leukemia at this point, but a possible blood/neutrophil disorder. But, of course, more tests are needed. So we started today with a new CBC. We got her first labs drawn, then went to the Hospital Cafe for lunch, then got a call then her blood clotted, so they couldn't put it under the microscope...so back to the lab we went where I spent the next 30 min holding preslie's hand and consoling her while the poked and prodded both arms. She is not a good bleeder, but is a great clotter...not a good combo! So he FINALLY got blood out of her after 'exploding' her vein and after I was white as a ghost almost collapsed on the floor (a mother can only take so much):). So home we went and got the call when we got home then her 2nd collection of blood clotted badly as well...so back down to Primary's we go tomorrow morning for round 3. Once the CBC comes back, we will then hopefully know either A)what we are dealing with, or B)what other tests need to be run to get a difinitive answer! So waiting once again....we have become the local experts! :) thanks and much love to everyone!!!

Mary Kay Consultant

I am a Mary Kay Consultant and figured recently that this would be a great way to earn money for the extra expenses we've incurred since the birth of Preslie, our daughter with Down Syndrome as well as a heart defect (ASD). My husband is in the excavating business and with the economy the way it is, pay checks are few and far between, so I was trying to think of a way to earn money for the piles and piles of bills while offering something great to people, and I came up with this...
You can go to the Mary Kay website (link is on my blog), pick out the products that you want (they will be 25% cheaper then listed on that website) and email me with your order. I will email you back a price (I will charge a $5 flat rate of shipping to everyone) and then we can place the order (I will accept money order or check) and when the order arrives, I can mail it to you. I will only be making 25% on orders which will go to our never-ending expenses. So please, if you'd like to try Mary Kay or have used it in the passed and would like a 25% discount, place your order today. It's also great for other Down Syndrome or heart mommies that are washing their hands a hundred times a day. My hands are constantly dry and cracking, but Mary Kay has a great product (SATIN HANDS) that really helps with that. Both my husband and I use it. Anyway, please let me know if you are interested!!!