Super Silas: The Boy Baby Wonder

01/30/2026

We lost one of our encephalocele warriors very suddenly and we are trying to help her mother get all the support she can to give her baby the funeral she deserves. Even just a share could help.

When we found out about Silas' condition, we joined a very small group of other parents who had been given the same rare diagnosis for their children. Among them was Isabel and her mother Marilyn. We have watched Isabel's journey for over 3 years now and we are just looking to return support to one of the families who supported us so much during some of the scariest days of our lives. Rest in peace, Isabel. 🩵

Isabel Figueroa was born with a rare birth defect called occipital encephalocele, which … Marilyn Vega needs your support for Help Lay Isabel Figueroa to Rest

10/24/2024

Aaaand we are back!

10/03/2024

Good morning, everyone! Today we are sharing a very special post for a special friend of ours. Liam is a fellow frontal encephalocele baby just like Silas and his family has joined a campaign to hopefully make Liam 2024's Baby of the Year! If Liam wins, this will help us educate and spread awareness about this rare medical condition and shed light on the experiences of families just like ours through ad campaigns featured in Good Housekeeping. Liam's family will also be awarded a monetary prize which will help them pay off some of the debt they have accrued during Liam's medical journey. A single vote for Liam takes only seconds and is completely free. As you can imagine, we are very passionate about supporting our encephalocele warriors so it would mean a lot to us if you could spare a moment to help Liam and his family reach their goal!

Championed by Jessica Alba, the Baby of the Year contest hosted by Collosal aims to support the non profit charity Baby2Baby, which provides impoverished babies and children with clothing, diapers, and other basic necessities across the country. You do not have to pay to cast a vote for Liam, though the option to pay for votes is presented on the website.

https://babyoftheyear.org/2024/liam-d832?fbsh=1&fbclid=IwY2xjawFrpKpleHRuA2FlbQIxMQABHb2jQ8VSTFLZvkrQUcvL9v2nuxPcRiYzPF147W9JfXvQP_qAYDb6EJmL-A_aem_mBcSyFx12RLULVVnvFAIXw

It takes a village! Cast your votes for Liam Sachs.

07/11/2024

6 week post-op!

06/11/2024

The glue on Silas' nose incision has finally come off and I gotta say, he's looking pretty handsome. 🥰🥰🥰

06/03/2024

Happy birthday, Super Silas! We love you more than anything in the whole world!

05/30/2024

10 day post-op appointment today!!! The last two days we have really been able to see our son's personality again. Today is also the day we finally get to fly home. ☺️ I actually cried a little this morning because I'm so happy to be leaving. 😅

05/28/2024

This past Saturday we got the pleasant surprise of a discharge from the hospital! We are still here in Colorado until Silas' 10 day post-op appointment but we are grateful that we no longer have to watch our boy suffer in a hospital bed. While the doctors and nurses we had this time around were so incredible, part of their job is to make sure Silas is safe and healthy and unfortunately for a baby that can honestly look like a week of terror and torture. That aside, having the opportunity to be shown so much compassion and care from the hospital staff along with being accompanied by some of my family this time around made things a little easier for Tom and I to endure. It also very obviously lifted Silas' spirits to have his people there with him. I cannot thank everyone enough for the many ways in which we have been shown support and generosity. The days with Silas have still been very tough, as he's extremely swollen and still in a decent amount of pain, but we are getting through it little by little. The extent of this surgery was far greater than any he has had before so it's no surprise that the journey to healing has been so intense for him. One of these days, I'll share in detail what all was done for him because I have lots of people wondering... For now though, we are all very tired and looking forward to better days.

Oh, and even though they still had to reopen his incision across the top of his head, they let him keep his hair. 💙

05/24/2024

We are happy to report that Silas has made some great improvements today. He was able to eat his first few bites of food and was overall in better spirits. He has an EVD drain in his head that may be able to come out tomorrow which will make it easier for us to be able to hold him (we haven't been able to yet but I did try once and he wasn't having it) and we'll also be able to take him for little strolls in a wagon throughout the unit. Unfortunately, he has already blown two IVs and only has one left that we can use so I'm really hoping we can get through the remainder of his IV meds before that one goes bad too. Overall, it has been another very intense experience for all of us but Silas is very strong and getting better everyday.

05/21/2024

Update: He just made it to the recovery room! We haven't gotten to see him yet but the Drs came out to show us some pictures and said he did AMAZING! We have an exhausting recovery ahead of us but all I can hope is that my baby heals quickly and is in minimal pain. Thank you to everyone who is always rooting for our precious son. 💙💙

05/21/2024

Silas is currently in surgery and while I definitely bawled my eyes out watching him go back, I can say that I feel like we've never been in better hands. This is expected to be a pretty long surgery so I may not have a lot of updates for quite some time.

05/21/2024

We had a day full of fun with Silas today. It was spent playing and being with some of our family who came to be with us here in Colorado. Tomorrow is a very big day for us. I don't know how it came so soon but I know it's not going to be easy. We are feeling so many mixed emotions for our perfect little boy. More than anything we just want the very best for him. He deserves nothing less.🩵