Pray for Baby Wren

Our boy started 2nd grade today. Sis started 9th!

Poor boy, he's missing school and his friends 😔😍

"What to eat, what to eat?" Ten seconds later, "mama, I'm going to go outside with Mollie."

Wren had an awesome week! He started February with a celebration of CHD Month. His teacher is so amazing! We feel so lucky (thats probably an understatement)!

Today (2/1/24) started Congenital Heart Disease Awareness month. I'm sure this is something the majority of you are unaware of. Our son Wren Lucio is 1 in 100. He was born with half a heart. I felt speechless as his class and others around the school showed us amazing support. We have been so blessed with Mrs. Bates over the last 3 years. We just want to say thank you to her for organizing everyones shirts, everyone that loves on and supports Wren while at school! Thank you, thank you, thank you!

Now this coming week we can celebrate Rare Disease Awareness month. We also get to share facts and show love to Wrens Kabuki Syndrome diagnosis.

Happy Congenital Heart Disease Awareness, and Rare Disease Awareness month!!! So much to celebrate!!!

Just a few photos. We're just chugging along over here. Nothing new going on. He's doing well at school. He has stayed healthy so far this winter. 🤞🤞🤞 I just pray it stays that way!

We don't get the best news all the time. This message made me have a sigh of relief, brought tears to my eyes!!!! Such good news 😍😁

7 years ago today we finally got to bring our baby home after 147 days. No one knew we were home, and it was the best late Christmas present ever! I'm so greatful each day for all the love, care, and support from his entire team at DeVos! They kept our boy here with us, I'll always have a special place in my heart ❤️ Though we visit often and have had stays, none of them quite like that stay. We are truly blessed, grateful, humbled and just flat out thankful for everything and everyone that has been along this journey with us!!!

We took the kids to see Santa last night. Pictures are priceless! Happy Holidays from our family to yours!

We played about 20 games of connect 4. Then we did word building puzzles. He's so great, he just loved every second of it.

Well that last week has been the least amount of fun we have had in a while. Last Thursday Wren had a cardiologist appt, and we were supposed to get his pneumonia Vax. The traffic ended up being so bad we missed his shot appt at 8AM and barely made it on time for the cardiologist at 830. Then on friday he had dental work done, 2 teeth extractions and 3 fillings were filled. This is the first time Wren has got his teeth cleaned. Unfortunately he just can not handle dental work awake, so like I posted before he placed under general anesthesia. Today we were back at the hospital at 6AM this morning for an MRI, under general anesthesia again. Last week we didn't go back with him to and it was horrible for him. So today we tried to go back with him, and it was the most traumatic experience we've had in a while. So I got his MRI results back already, but now waiting to hear what he had to say. We will also have a referral going out for a liver specialist in Ann Arbor/Detroit area. DeVos currently doesn't have a doctor in this position. For right now though we don't have any more appoints for Wren this year! *sigh* Hopefully it stays this way. We obviously still need to go get his shot, but I think he deserves a break for right now.

I also added some pictures from the wedding. 🥰😍
Thank you all for the continued support, prayers and love. We appreciate all the positive thoughts.

Please just be thinking about our boy. Hes having dental procedure this morning, but he has to be placed under anesthesia.

On Sunday we celebrated Wrens last dose of Norditropin. Today we celebrated Skytrofa, and a once weekly shot. I am excited for a once weekly, instead of a daily shot. I can say that having to give him a shot just sucks in general. This new shot, even though he screamed and cried they skytrofa is so much easier to give. Let's hope this next three weeks of shots go well, and don't end back in the same spot.

Hes working hard on opening his treats, all into the same bowl. But let's be honest...he's not eating any of it 🤣🤣🤣

I just had to share a memory that came up today in my photos 😭😭😭 Slow down time!!!

Wrens School had the first bowling event today! Always sooo much going and supporting all of the awesome kids!!!

Here's a few other pictures as well from lately ✨️

That one time he fell asleep sitting up 😍😍😍

Celebrating Wrens 7th year on Facebook. Thank you for your continuing support. I could never have made it without you. 🙏🤗🎉

Hes been loving coloring and painting. ❤️ We've enjoyed all his new art in the house.

Man this dude is so amazing! He was so excited for school to start today. He was even more excited because he was sharing snack with his friends at school for his SEVENTH BIRTHDAY!!!!!!!!!!!!! How did this happen? We can't wait to celebrate Wren tonight! Of course Wren chose a lawnmower theme again. ❤️🤷🏼‍♀️ Here's to Wren let's party!!!!!

We have done a few fun things this summer but our boy is definitely ready to go back to school. We went to Kings Island, Cincinnati Zoo, and Cedar Point and did a ton of just hanging at home. He's grown, and his Sriracha level has bumped up a few levels and he's become much more independent on so many things. Just a few more days our boy will have finished his 6th circle around the sun, begin his 7th and start his first day of first grade! 😢

Our boy is about to be SEVEN!!
I am not lying when I say, these seven years have gone so incredibly fast. He has 20 short days left, it's constant topic of conversation right now. I love it, and I hate it. 😢
But if you feel so obliged here is his wishlist ❤️
Hi! Take a look at this List I created on Amazon. https://www.amazon.com/hz/wishlist/ls/1HFNSDJ8QMEM3?ref_=wl_share

I was scrolling through Facebook and a post caught my attention. I started reading, and my heart started feeling sentimental and all the flashbacks start flooding my mind. Where we started in 2016, and here we are today with this AMAZING boy!

👇👇Please take time and read this.👇👇

"When you’re going to have a baby, it’s like planning a fabulous trip to Italy. You buy a bunch of guide books and and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland? What do you mean Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. You’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible disgusting place. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people that you never would have met.

It’s just a different place. It’s slower paced than Italy. Less flashy than Italy. But after you’ve been there a while and you catch your breath... you look around, and you begin to notice that Holland has windmills. And Holland has tulips. Holland is beautiful.

Everyone you know is busy coming and going from Italy. And for the rest of your life you will say, “That’s where I was supposed to go. That’s what I had planned.”

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland." - Emily Perl Kingsley