I want to thank you all for reaching out after I posted my last post. I didn't realize how many people I didn't tell about Elias' condition. Sean and I really appreciate all the support and prayers.
According to sickkids.ca, 1 in 5000 children have sagittal synostosis when they are born. I have talked to two people already about how they know someone whose child had craniosynostosis. I hope to connect with a parent to gain their perspective on what happened to their child as they went through surgery and post-op. It is a lot less scary knowing that others have gone through the same situation with successful results.
So we have a date. June 25th is when Elias will have surgery, assuming he doesn't get bumped by someone else. I don't have any more information about the surgery yet besides a little pamphlet I received in the initial appointment. We are expecting to get more information mailed to us to explain what will be happening.
Elias is also going to have a star scan on June 13th. I'm not entirely sure what type of scan it is. It might be an MRI. The star scan will take a picture of his head so that the doctors can have a precise image of his head before surgery.
We have experienced a star scan before. Nathan had a star scan done on his head when he was around 6 months. Nate favoured one side of his head and developed a flat spot on one side. He had to wear a helmet for 6 months. In order to make sure the helmet fit, he had a star scan. What I can remember from the scan was that Nate had to lie very still and the room was fairly dark. The technician/doctor had this weird flashing light that was used to distract Nate and help him to look at the proper place. It was fairly stressful trying to make a child lie so still. From what I remember, I think Nate did fairly well lying there.
Once Elias is healed from his surgery, he will have to have another star scan so that they can compare the before and after and (I believe) to make a helmet. So we will have another child that wears a helmet. Unfortunately, we don't get to pick a fun print for the outside of the helmet like we did with Nathan. I was already told that Elias' helmet will be white. Elias, like Nathan, will have to wear the helmet 23 hours a day, every day. The helmet doesn't hurt as it doesn't put pressure on the head. Instead, the helmet allows for the head to grow in the areas where it needs to fill out.
Here is Nathan wearing his helmet. The helmet is open at the top of his head and held in place with a strap on the side. His helmet is hard on the outside and foam-like on this inside. I imagine Elias' helmet will be different.
We've had several people ask us how we are doing. I never really know how to answer. Initially, we were in shock. We have definitely questioned ourselves with why this would happen. At this moment, I would say that we are at peace with the idea of Elias having surgery. I am able to explain the situation to people without crying. As we get closer to the date and proceed with appointments, I think we will get more anxious about everything. I still have a lot of questions that will be answered in time. Honestly, I wish we could get the surgery as soon as possible. Waiting is the hardest part.
So for right now, we are hanging out and enjoying Elias. Today, he looked right at Sean and gave a huge smile! I tried to get a picture of his smile but he would not perform for his mom! I'm going to have to go on stealth mode to get it.
Psalm 46:1 - God is our refuge and strength, a very present help in trouble.
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