Today we met with Dr. Igbase at Children's Mercy. He is the neurosurgeon that preforms the endoscopic procedure for craniosynostosis. He confirmed our fears that Ben does have metopic craniosynostosis and he will need surgery to correct it. His procedure would take about 1 1/2 hours to perform, he would be in recovery overnight in the ICU and then the next day he would be able to go home. He recommends I take at least a week off work for Ben's post op recovery. We have a CT scan and an appointment to meet with the craniofacial surgeon that would be working with Dr. Igbase on the surgery. These appointments are both scheduled for February 3rd. The CT scan would be performed in order to map the route for his operation. Ben also has an appointment with an opthamologist on Feb 4th for his lazy left eye. I'm not sure why Dr. Igbase wants this done before the surgery, but he does. We are thinking it is to protect himself from a liability if Ben has eye problems down the road. We are waiting to hear back from the scheduling department, but we are thinking that Ben will have surgery on February 8th. About a week after surgery, Ben would have to start wearing a helmet to reshape of head. This would have to be worn for 9 months to a year depending on the results.
That being said, we are still meeting with Dr. Singhal (a craniofacial surgeon) this Friday. This appointment is for a second opinion and to hear his thoughts on why we should do the more invasive surgery vs. the one that Dr. Igbase suggests. Honestly, Seth and I feel that Dr. Singhal would have to have some pretty compelling evidence of why we should do the more invasive route in order to change our minds. With Dr. Singhal's surgery we would have to wait until he was 9 months to a year old to get the surgery. No helmet would need to be worn with this surgery but there is a lot more blood loss during surgery and the surgery is much more complicated.
We want to thank each and every one of you for your support and prayers. We are so blessed to have such wonderful people in our lives. Seth and I are ready to move forward and past this hurdle so we can focus our energy on the wonderful gift God has given us. Ben is such a wonderful baby and has already brought so much joy to our lives and those around him. I will continue to keep you updated on his progress as the days go by and let you know how the appointment goes on Friday with Dr. Singhal.
My thoughts and prayers are with you. Children's Mercy is a wonderful place. That is where Matt and Krystol take Lexie for several of her medical issues. I am so proud of you Seth, for the man you have become. This is only a bump in the road. You will handle whatever is thrown at you, learn from it, and be stronger. I have faith in the two of you!!! Ben has been blessed with wonderful parents. Hang in there. You are in our hearts!!! LYB
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