Silas Miller
Donation protected
We, the friends and family of Heidi and J.L. Miller, are raising money to help cover the medical and travel expenses for Silas' upcoming surgery in Dallas, Texas on July 30th. Here is the full detailed description of what is happening written by J.L.:
"At some point, you may have heard me refer to the variety of medical adventures our firstborn, Silas, faced as a baby. One issue of particular significance was a rare fusion in the plates which make up a skull. While the presence of any fusion can occur in about 1 out of 2,000 births, Silas had an especially rare pattern to his fusion which complicated the situation. His case was, and still is, one of only 11 reported in the United States. As a result, we sought out the only physician in the country who had worked with the other 10 cases. As 6 months old, Silas had major corrective surgery in Dallas.
Because his particular situation was so rare, we have had to keep a close eye on his skull development over the years with regular tests and MRIs. Up until now, everything with Silas’ health has fallen within the spectrum of “normal.” Earlier this summer we were made aware of very beginning signs of intracranial pressure. Because Silas’ skull shape has been impacted by surgery, it has always been a risk that his brain would outgrow the space. We have carried this worry as parents for 12 years and it is hard to face the fact that our fears are coming true. Thankfully, at this time, Silas has no major symptoms but his situation requires us to be extremely careful. If the intracranial pressure increases, Silas could lose vision, mental capabilities, and gross motor skills.
We have discussed these circumstances with his surgeon in Dallas and spent a lot of time in prayer. Silas will be undergoing repeat surgery to relieve any concerns with pressure. While we are thankful to have such a skilled surgeon, this whole process is a bit overwhelming and downright scary. The surgery is fairly intense as Silas will have the majority of his skull removed, cut into pieces, and put back together like a puzzle to reshape his head. As much as it is scary for us as parents, it is a lot for a 12-year-old boy to handle. He just heard the news on Sunday night and is being extremely brave. He admits that he is anxious and had a number of questions. He ended by saying “I guess I’ve been through worse. I’ve got this. Now can we watch a history documentary together?”
Because the surgeon in Dallas continues to be at the top of the field, we will be heading back to his office. Heidi and I and the four kids will fly to Texas on Saturday, July 27th with the surgery taking place first thing in the morning on Tuesday, July 30th. We will be staying in Dallas for two weeks to provide time for Silas to completely recover. We fly home on August 10th.
Heidi and I covet your prayers during this time. We have walked this road before and we know it will not be easy. But, we are confident that God is with us and will bring comfort to Silas. Please pray that all will go well with the surgery and there will be absolutely no complications. Pray for Silas to have the necessary courage and the maturity to turn to God when he is scared. When we decided on the name Silas, it was our hope that our son would embody the Apostle Silas’ ability to trust in God despite difficult circumstances. But we still wish we could take his place in this situation. Pray that the process with insurance is smooth as we need to travel so far out of network to receive appropriate care. Pray for our other kids as they struggle to deal with the anxiety of seeing their big brother walk this road. Pray for us as parents to have wisdom on how to guide our family through this difficult time.
Heidi and I are incredibly thankful for the wonderful community which surrounds our family and our sense of gratitude is never greater than in times of need like this. In our 19 years of marriage, we have been reminded of this time and time again. We are truly blessed by friends who pray with us and journey alongside us. We are always thankful for the ways God meets us when we are brokenhearted and amazed by the ways God works in our hearts along the way. We look forward to sending along a good report when everything is done with the surgery and Silas is back to his regular quirky, fun-loving, and inquisitive self."
"At some point, you may have heard me refer to the variety of medical adventures our firstborn, Silas, faced as a baby. One issue of particular significance was a rare fusion in the plates which make up a skull. While the presence of any fusion can occur in about 1 out of 2,000 births, Silas had an especially rare pattern to his fusion which complicated the situation. His case was, and still is, one of only 11 reported in the United States. As a result, we sought out the only physician in the country who had worked with the other 10 cases. As 6 months old, Silas had major corrective surgery in Dallas.
Because his particular situation was so rare, we have had to keep a close eye on his skull development over the years with regular tests and MRIs. Up until now, everything with Silas’ health has fallen within the spectrum of “normal.” Earlier this summer we were made aware of very beginning signs of intracranial pressure. Because Silas’ skull shape has been impacted by surgery, it has always been a risk that his brain would outgrow the space. We have carried this worry as parents for 12 years and it is hard to face the fact that our fears are coming true. Thankfully, at this time, Silas has no major symptoms but his situation requires us to be extremely careful. If the intracranial pressure increases, Silas could lose vision, mental capabilities, and gross motor skills.
We have discussed these circumstances with his surgeon in Dallas and spent a lot of time in prayer. Silas will be undergoing repeat surgery to relieve any concerns with pressure. While we are thankful to have such a skilled surgeon, this whole process is a bit overwhelming and downright scary. The surgery is fairly intense as Silas will have the majority of his skull removed, cut into pieces, and put back together like a puzzle to reshape his head. As much as it is scary for us as parents, it is a lot for a 12-year-old boy to handle. He just heard the news on Sunday night and is being extremely brave. He admits that he is anxious and had a number of questions. He ended by saying “I guess I’ve been through worse. I’ve got this. Now can we watch a history documentary together?”
Because the surgeon in Dallas continues to be at the top of the field, we will be heading back to his office. Heidi and I and the four kids will fly to Texas on Saturday, July 27th with the surgery taking place first thing in the morning on Tuesday, July 30th. We will be staying in Dallas for two weeks to provide time for Silas to completely recover. We fly home on August 10th.
Heidi and I covet your prayers during this time. We have walked this road before and we know it will not be easy. But, we are confident that God is with us and will bring comfort to Silas. Please pray that all will go well with the surgery and there will be absolutely no complications. Pray for Silas to have the necessary courage and the maturity to turn to God when he is scared. When we decided on the name Silas, it was our hope that our son would embody the Apostle Silas’ ability to trust in God despite difficult circumstances. But we still wish we could take his place in this situation. Pray that the process with insurance is smooth as we need to travel so far out of network to receive appropriate care. Pray for our other kids as they struggle to deal with the anxiety of seeing their big brother walk this road. Pray for us as parents to have wisdom on how to guide our family through this difficult time.
Heidi and I are incredibly thankful for the wonderful community which surrounds our family and our sense of gratitude is never greater than in times of need like this. In our 19 years of marriage, we have been reminded of this time and time again. We are truly blessed by friends who pray with us and journey alongside us. We are always thankful for the ways God meets us when we are brokenhearted and amazed by the ways God works in our hearts along the way. We look forward to sending along a good report when everything is done with the surgery and Silas is back to his regular quirky, fun-loving, and inquisitive self."
Co-organizers (2)
Linda Knapp
Organizer
Fillmore, NY
John Miller
Beneficiary
Meghan Taylor
Co-organizer