Wednesday, December 31, 2014

Reflecting another year!

We made it! Another year! 

As I read last years blog, summing up the year, I cried, there were HUGE milestones! Amazing and long lasting memories. 

This year, did NOT fall short! 

We rang in the New Year under one roof, just as we will tonight! 

All three kids have grown a few inches and Waylon continues to put on weight (which has always been a problem for him, thankfully his doctor prescribed an appetite boosting med!). 
The top picture was Waylon when he got really sick and was admitted, but the skinnyness was his normal!
Hooray for weight gain!!!!

We hiked so many times this year as a complete family, that I have lost count. Except this time, Waylon was to big to wear in the front (and I learned of better and more comfortable baby carriers!). 

Waylon underwent this 3rd Open Heart surgery, where he was extubated (breathing tube taken out) as soon as he got into the ICU. He had some pain/sedation issues because we weaned quickly from morphine to cut down his risk of becoming dependent on it again. He was in and out in NINE days!! Everyone was amazed!!! 

We celebrated with family this year, not just our little family, but all of them! People who had not yet met Waylon was finally able to.
Meeting his awesome runner Devon Dean for the first time!

Our first easter celebrating with ALL of our family!

For the first time we took a vacation. We took ALL of the kids to the aquarium and spent the day walking around the little shops near by.

We have also chosen to live a healthier lifestyle. We not only have more energy and feel better physically and mentally, but my husband and I have lost a combined 75+ pounds!!! 
Because of this, I was able to run my first 5k race this year, and daddy joined a gym to train for Brazilian Jiu Jitsu. He has gained 3 stripes for his white belt in just 6 months. 

We have also had some upsetting times. Being apart, even for 9 days, was not easy. There were tears, heartache, and fuzzy skype feeds again. We learned that Waylon had many more complications after his first surgery than we were told, and we learned that he had a brain injury. The brain injury diagnosis was scary, its unknown territory, but it does give some kind of reason for many of Waylons developmental delays and muscle tone issues. We also learned that Waylons heart function not only decreased the normal amount post op (it is normal for decreased function to occur after open heart surgery because the heart had so much done to it), but his function decreased even more. His amazing cardiologist put him on a medication to help with this, and while it has helped, his function is still not the best. Also a week before Waylons 2nd birthday he became VERY sick and had to be admitted, because (as we found out) he had a common cold that caused dehydration. 

But we still truck on, we are still waking under the same roof every morning and tucking everyone into their own beds every evening. 

Waylon is still receiving quite a bit of therapy, but it has helped so much! He is now able to eat solids, including cereal, biscuits, hotdogs etc. You name it, he can probably eat it! He is now crawling like a normal baby. In the beginning we taught him army crawling until his body could build up enough reserve to do normal 4 point (both hands and both knees) crawling. 

Within a two week time period Waylon decided to not only start crawling, but sitting up on his own. For so long we worked on this, and helped him to build the necassary muscles for this simple task, and now he is DOING IT! He also received his second pair of orthotic braces for his ankles and lower legs to help with stability for walking. And walking he is, with assistance, but its WALKING!! 

We homeschooled again this year. McKayla knows how to spell her name, knows her alphabet, can count to 20 and has learned to add and subtract!!! Anthony has learned to read (smaller words,but he is reading!), count above 100, add and subtract double digits and knows the history of Thanksgiving. 

We have celebrated birthdays! Every birthday is special, but there is so much to be said about another birthday for Waylon. 20 years ago kids like him didnt survive long. A high percentage dont make it to kindergarten. 

I was blessed with another year of meeting amazing heart parents, some face to face when I was gifted another turn to go to the National Pediatric Cardiology Improvement Collaborative. It is always so informative, and humbling to be in a room full of well established/informed doctors and medical staff who sit directly beside parents. All working together to make sure these kids have longer lives and with more quality. 

This year has been amazing, yet again. But we have also experienced loss. We lost a wonderful woman who helped to raise my husband and his sister from a very young age. She welcomed me with open arms into their family. There is not a day goes by that we do not think of her, and this christmas was hard without her.
The amazing Roxene A.K.A Aunt Cocky!

We also lost parts of our heart family. One in particular that we had known not only through social media, but in our day to day lives. He spent time in the hospital while we were in Michigan, right down the hall from us. His mom and I speak weekly, and she has blessed us with amazing pictures of Waylon so many times. Unfortunately our sweet friend lost his battle with CHD while inpatient for Waylons recent open heart surgery. Out of the loss of him, was born a wonderful foundation to help raise funds to fight CHD. I am proud to say that I not only know the people who started the foundation, but had the amazing job of being his parents. 

The Legendary Heart Foundations FIRST heart walk!

                                           There is so much more!! Here are a few extra pics :)
The yearly Lil Heart sluggers Day out at the park!


Our buddy Justin visited again this year to bring my special blanket for surgery!
He has the same heart defect as Waylon!

The day he said Da-Da!!!

                                      HAPPY NEW YEAR FROM OUR FAMILY TO YOURS!!!!
                                                          Thanks for being apart of it!!!