It has been one week since Tayta's revision surgery and tonight we are packing our bags, preparing for our drive to Chicago in the morning and our flight to Jordan tomorrow afternoon. Kristen had her post-op appointment with Dr. Siebert yesterday; he removed her stitches and told her that she looks great. I agree. Residual swelling should subside over the next six weeks.
At our last dinner in the Madison Ronald McDonald House, we met the Melendez family. Kristen, with her natural social astuteness, noticed them first, noting that their son appeared to suffer from Parry-Romberg Syndrome. We introduced ourselves and asked if they were here to see Dr. Siebert. When they understood the connection and we explained that Tayta had just undergone her second surgery with Dr. Siebert, an instant bond was formed. They were so happy to meet us. Though they had been in contact with other PRS families, they had never met another PRS patient in person, let alone anyone who had undergone surgery with Dr. Seibert.
Tayta talked with Diego--he was concerned about the pain he would feel and Tayta explained how all the nerves in his face would be cut. He would experience discomfort, but hopefully no pain.
Diego's dad and I took pictures of our PRS kids together. Tayta and I were touched by their family's story: Diego showed signs of PRS when he was two years old, and soon after Diego's father moved their family from their home in Puerto Rico to Orlando, Florida, so that they could find a treatment for Diego's PRS. Their long and persistent search and research ultimately led them to Dr. Siebert, and they are filled with hopeful anticipation as they prepare for Diego's first surgery on Monday. Diego's bone and tissue atrophy are quite severe so he'll likely have to undergo a few surgeries; he will need bone reconstruction as well as the free-flap tissue transplant that Tayta had.
Please take a moment to visit the blog which Diego's family has set up on his behalf. You can read more of his story and meet his family (in Spanish). While God has provided for most of the expense of Tayta's surgery via our insurance coverage, not all families enjoy this benefit and must raise money via donations to cover the cost of these expensive surgeries. Please consider donating and praying for Diego and his family on Monday as he undergoes his first surgery. We will be praying and cheering for him back in Mafraq, Jordan!
At our last dinner in the Madison Ronald McDonald House, we met the Melendez family. Kristen, with her natural social astuteness, noticed them first, noting that their son appeared to suffer from Parry-Romberg Syndrome. We introduced ourselves and asked if they were here to see Dr. Siebert. When they understood the connection and we explained that Tayta had just undergone her second surgery with Dr. Siebert, an instant bond was formed. They were so happy to meet us. Though they had been in contact with other PRS families, they had never met another PRS patient in person, let alone anyone who had undergone surgery with Dr. Seibert.
Tayta talked with Diego--he was concerned about the pain he would feel and Tayta explained how all the nerves in his face would be cut. He would experience discomfort, but hopefully no pain.
Diego's dad and I took pictures of our PRS kids together. Tayta and I were touched by their family's story: Diego showed signs of PRS when he was two years old, and soon after Diego's father moved their family from their home in Puerto Rico to Orlando, Florida, so that they could find a treatment for Diego's PRS. Their long and persistent search and research ultimately led them to Dr. Siebert, and they are filled with hopeful anticipation as they prepare for Diego's first surgery on Monday. Diego's bone and tissue atrophy are quite severe so he'll likely have to undergo a few surgeries; he will need bone reconstruction as well as the free-flap tissue transplant that Tayta had.
Please take a moment to visit the blog which Diego's family has set up on his behalf. You can read more of his story and meet his family (in Spanish). While God has provided for most of the expense of Tayta's surgery via our insurance coverage, not all families enjoy this benefit and must raise money via donations to cover the cost of these expensive surgeries. Please consider donating and praying for Diego and his family on Monday as he undergoes his first surgery. We will be praying and cheering for him back in Mafraq, Jordan!
2 comments:
Thanks for sharing this and getting to see their beautiful picture... Will be praying for Diego and for you and Tatya as you head back home!! Blessings!!
Melissa, I am behind in my readings on facebook and just found your post on the Parry Romberg page. What a blessing for Diego and his family to have you and Tatya in Madison at the same time. God is good, he always puts the right people in our paths when we need them most. I hope you all are doing well, Tatya looks awesome! and beautiful!
Vicki Honeycutt
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