Medical and Travel Expenses for Silas & Family

Hello! My name is Sara. I am reaching out for help because my beautiful son Silas is due to have his 3rd major brain surgery and facial reconstruction in May and we will be traveling to Denver for his procedure.

Silas has already had an extensive medical journey, but we have been told that he is in immediate need of this operation because a large cyst was found in his brain that needs removing. They will also be removing a bony growth and scar tissue that has accumulated between his eyes in the hopes that it will increase his field of visibility and support the proper development of his eyes. We are absolutely gutted as a family by this and very heartbroken for our son who has been through so much.

While we were able to have his prior procedures done in town, we have been given no choice but to go out of state for this one because the specialists he now needs are not in NM. The truth is that we have already begun to see terrifyingly large bills start to come in for the imaging which diagnosed the cyst and it is already creating a lot of financial strain for us. I am afraid that Tom and I will be unable to afford it on our own this time due to the magnitude of everything.

The money collected will go towards helping us with travel, lodging, and medical expenses pertaining to this operation. We know we will have to stay in Denver for at least 10 days post-op and return to Denver for the 4-6 week post-op appointment. Additionally, I will need to be out of work for an unknown amount of time while Silas recovers and having just purchased our first home prior to this surprising news, I know that Tom alone cannot support our family while I stay home.

We are forever grateful to those who have always offered their support and love and I cannot thank everyone enough for any and all contributions made.

For those new to our story or those who would like to hear more, I have included a bit more about that below. Believe it or not, this is the shortest version we could give but hopefully it helps to paint a picture of the absolute strength and resilience that my son has. We also have a Facebook support page which I update as often as I can so I will link that HERE.

For any other parents who are going through or have gone through anything similar with their children, we see you and we know the everlasting mark this leaves on your heart and within your soul.

-------------------------------------------------

Hello,

Our names are Sara and Thomas. Chances are that if you are reading this, you probably already know that we are parents to an incredible little miracle named Silas. You may also know that Silas has been on the medical journey of a lifetime in his short 21 months on this Earth so far. If you didn't know these things about our family, we would love to share more about us with you. However, in order to do our story justice, we feel it is imperative that we start from the very beginning...

We knew throughout the pregnancy that Silas would be born with a special difference; a benign facial tumor detected via ultrasound. It was a scary discovery, but one we knew we could overcome easily as there was no suspected threat to his health. The day he was born was one of the most incredible experiences of our lives so far but the very next day, he was taken for an MRI to confirm that there was no other cause for concern. The subsequent findings of that MRI absolutely devastated our family and seem to have changed our lives forever. It was discovered that Silas had a very rare neural tube birth defect called Frontonasal Encephalocele. In short, his skull did not form properly and a sac containing brain matter and spinal fluid began to protrude from between his eyes. We knew from the moment they explained this to us that we had a long and terrifying journey ahead, but nothing hurt us more than to know what Silas would have to overcome.

It began with a short stay in the NICU, where we met with a neurosurgeon at UNM who seemed to be the only person we spoke to that had ever even heard of what Silas had. He was so reassuring. We felt that he really brought light to a very dark place when we first met him and he joyfully said to us, "We are Team Silas!". We are forever grateful to him, as he was able to lay out a plan for surgery that we were to execute which ultimately saved our sons life. The procedure was to be performed originally between six and nine months of age but the universe had other plans for Silas and for us. Silas' "bumpy", as we called it, ended up rupturing when he was just three and a half months old. This would wind up being another one of the scariest days of our lives. Silas was immediately taken by us to UNM to be operated on the following day. As first-time parents, handing our three-month-old baby over to a team of surgeons knowing what they had to do completely tore us apart. For this first surgery, the priority was to repair the Encephalocele via an incision stretching across the top of his head so that they could access everything they needed to perform a skull graft and repair of the dura which encases the brain. During this surgery, a grape-sized portion of his brain that had been in the sac and was determined to be non-viable was also removed. There were so many questions and uncertainties as to what that would mean for his future. To this day, we are still not positive how, if at all, he will be challenged throughout his life as a result. Ultimately, Silas did well but it was probably the worst thing to witness our son in the condition that he was in coming out of that operation. One blood transfusion, countless IVs, a feeding tube, and two horrifyingly traumatic weeks later, he was finally discharged. We knew he would need at least one other surgery but for the time being, our baby boy was allowed to just heal and be a baby. We were also allowed to heal and just be his parents, but the worry really never stops after something like what we had experienced.

Months later, we were told that the size of what was left of the "bumpy" was jeopardizing the development of Silas' eyesight. We needed to do another surgery to attempt to reconstruct the top of his nose and remove additional tissue and cartilage that was obstructing his field of vision. While we knew this day would come, we could honestly never be prepared enough for it, and we were still suffering in many ways from the emotional trauma of the events that had transpired since learning of Silas' differences in the womb. We knew that no matter what, we had to do what is best for him and give him the best fighting chance at normalcy. So, we proceeded with surgery number two at ten months old. This one was seemingly much less invasive and the recovery was far less petrifying, although nothing about it was easy for us to experience again aside from being familiar with the staff and knowing that Silas was much bigger and stronger than he had been seven months prior. The hospital stay was significantly shorter as well and it seemed like we were finally at a point where we wouldn't have to concern ourselves with the agony of putting our only baby under the knife again for a good, long while. That was until just now.

As Silas has grown and recovered, his bumpy seems to only be getting ever so slightly larger as time has passed. Initially, we were told that it most certainly could be swelling from surgery number two which may take several months to fully resolve. However, in more recent times it has become obvious that swelling is certainly not the culprit and that indeed, something else is to blame. At the advice of his neurosurgeon and craniofacial plastic surgeon, it was recommended to us that we seek out additional specialists to add to Team Silas. We chose to explore a recommendation to the Children's Hospital of Colorado in Denver where we met another neurosurgeon and a member of their plastics team who highly recommended that we do new CT and MRI imaging to figure out why we are seeing the growth we have observed. Two trips to Colorado and one shocking revelation later, we have been told that not only is the bumpy entirely made of bony growth (which would absolutely need to be addressed ASAP due to the fact that it was again impeding the development of his binocular vision), but something even more pressing was stumbled upon in the review of the imaging. It was revealed that Silas has a large cyst that has formed in his brain where he once had a drainage tube inserted during his first surgery. To say that we were overcome with many, many different emotions at that point would be a huge understatement. It is almost a burden of endless grief that you feel during times like these. Grief for your child who must endure so much pain and confusion. Grief for their childhood which is no doubt forever tainted by the seemingly unending courage and bravery they must possess in order to survive things a child shouldn't ever experience. And grief for yourself as a parent because it becomes so difficult at times to relish in the joys of watching your baby learn and grow when there is such a dark cloud of sadness, guilt, anger, and worry that looms in the back of your mind at all times. Our hearts break over and over and it is physically painful to know that we are being forced as a family to prepare for probably the biggest procedure Silas has had yet.

So here we are. Surgery number three. They will be removing the cyst and we are all in agreement that it is best to combine it with what may be a final but major facial reconstruction on our sweet, loving, silly, and oh-so-special little boy. If someone had told us that one day, we would be blessed with a perfect, innocent little baby who would undergo three major brain surgeries before he is two years old, we probably would have fainted.

If you are still with us as we write this, thank you so very much for diving into our story and for loving us and our son. We are very blessed to have so many people in his corner who just want to see him go on to live a long and happy life with no more major medical intervention necessary. We have big dreams for our baby and although the experiences we have shared as a family have continued to make us stronger, we honestly cannot wait for the day that we get to breathe a sigh of relief and know that the best is yet to come for Team Silas.

With never-ending gratitude,

Thomas and Sara