HOPE

Let me start by saying, this post is WAY OVERDUE! I began writing this back in January, and it's now April, almost May. With that being said, this post starts off from Willie's first birthday, backtracks to the end of 2018, and then catches back up to where we are today. Thanks for reading!

Willie is one! The day of his Willie Wonka themed birthday party, his daddy made a speech in which he stated, "Guys, I know we went a little overboard for a first birthday party, but there were many times we didn't know if we were going to get to celebrate this." He said it choking back tears and I was a blubbering mess. That statement was spot on. We are so happy to announce that Willie made it through the first year of his life, defeating every single battle that came his way. We're ready to help him fight all 2019 has in store for him too.

His birthday party was on a sunny Sunday afternoon, with a moon bounce in the backyard, a candy bar inside, decorations everywhere, and around 50 of his favorite people and cheerleaders. He was spoiled with gifts, cuddles, and most of all, love.

Before I update on Willie's latest medical challenges, I want to start by saying he ended the year busy and traveling! We had a great Thanksgiving, Willie had a surgery the day following Thanksgiving, we did lots of festive Christmas traditions, we celebrated the birth of our Savior, Willie traveled on an airplane for the first time (did GREAT!), he wore his first tuxedo, and then our family took a road trip to the mountains for a week.

Between all of the fun, we attend therapy 3-4 times a week, have at least 1-2 doctors appointments weekly, have some playdates with friends, and try enjoying the every day little moments. At times those moments are hard to recognize, but Willie always clears my blurred vision when I need them most.

The Monday of Thanksgiving week we found out Willie has severe obstructive sleep apnea. What does that mean? Basically, he isn't getting restful sleep and stops breathing anywhere from 10-30 times an hour while sleeping. His ENT scheduled surgery for that same week (whirlwind!), and he had surgery the day after Thanksgiving. We went into that surgery blind, not knowing what the doctor would find or what he would have to repair in order for Willie to get quality sleep. As you can imagine, turning over your child for surgery isn't easy when you know what is going on in the operating room, let alone when you won't be told until afterward. Willie's ears were full of fluid, so he had tubes put in. He also had something called a supraglottoplasty done, where the extra floppy tissue was removed from around his voice box that was blocking his airway. We were hopeful that this would improve his sleep.

A couple of months after this surgery, we repeated his sleep study. Unfortunately, the results had not changed much. On this coming Tuesday, April 23, Willie will go back to the OR and have his tonsils and adenoids removed. This is the next step in trying to improve his sleep and hopefully get him to breathing better. While under anesthesia he is also having three procedures performed by his urologist that have been lingering on Willie's to-do list. We are thankful these two doctors are knocking out all these procedures as a team so that Willie only has to go under anesthesia once rather than separate hospital stays. On the flip side he is going to be in pain in multiple areas of his body during recovery. That is the part I have struggled with most. Seeing him uncomfortable and not understand why he is feeling the way he does is heartbreaking.

So Tuesday will be another day of getting to the hospital early for checkin, hugging and kissing Willie goodbye, and tapping our feet in the waiting room while we wait for updates and outcomes. It's the fifth surgery he's had in his short 15 months of life. I know a lot of people think we are pros at the surgery gig and that this is something we can easily handle. And sure, the stakes aren't as high as when he had open heart surgery twice. You would think that would be comforting, but truly every surgery is scary. Willie is older now, but still fragile. He is stronger, but still weaker than those his age. He is more experienced in the operating room, and I so badly wish he wasn't. Any surgery, big or small, is still surgery on a little, 20 pound baby.

I am ready for things to start going Willie's way. We knew there would be challenges that came with his diagnosis of Down syndrome and Congenital Heart Disease, and we are facing those everyday. However, so many of his medical obstacles are unrelated to the "typical challenges and conditions" seen in Down syndrome and CHD. As if he doesn't have enough on his plate, his plate keeps getting bigger. I am exhausted for him and cringe as I get a phone call of results from his latest blood draw or ultra sound in fear of what message the doctor might deliver.

Some exciting news is all the things Willie has been up to! He is getting closer to crawling if he could just figure out what to do with his arms. We hope to hit that milestone soon. He is also getting closer to sitting independently everyday. Back in February he graduated his helmet and is now very "well rounded!" Feeding therapy has been a little slower with progress lately because he is getting a mouthful of teeth, but he is still putting the work in. He's getting more vocal everyday, has learned how to clap, is still obsessed with the movie Trolls, and smiling is still his very favorite. And the most exciting news of all, Willie will begin Mother's Day Out in the Fall one day a week! We are so excited for him to be around and interacting with babies his age and being taught and cared for by teachers who welcome him and his differences. Praise be to God!

Over this past weekend we went to the beach with several couples who all have babies around Willie's age. It was so fun to see them all together and for him to be so curious about what they were up to. It was the perfect getaway before his next surgery and recovery. I am also very thankful that this Sunday is Easter. It is the perfect reminder of Jesus' love for us, hope for us, and his dedication to those who believe in Him. What a sweet reminder and the perfect timing for it. God's cool like that.

"Blessed are those who have not seen and yet have believed."

- John 20:29

Please keep our family, especially Willie, in your prayers this upcoming week as he overcomes another challenge. Thank you for your support! Xo