I recently had a friend reach out to me about someone whose child is going through the same thing as Elias. As I read the text about the conditions, it sounded exactly like what Elias had and I didn't have to read through the whole thing to remember the feeling of helplessness and fear for my child. For me, having a child with a fever at home freaks me out. However, trusting God and having family and friends close by really helped me when it came to the surgery and recovery.
I would like to let you know, if you know someone that is going through the similar situation, please don't hesitate to pass them my number or email (or this blog). I would love to talk to them about the process. They are not alone and there is a light at the end of the very scary tunnel. Also, there are some Facebook support groups for parents who have children with craniosynostosis. I can't endorse any of them as I haven't officially joined any but they are out there. :)
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| Elias - 8 months old. Christmas picture without a helmet. He still needs to wear it. |
Elias update:
Elias is 9 months old. We recently went to his 9 month check-up appointment with his pediatrician. Elias is healthy and there are no concerns with his health. Dr. F, pediatrician, mentioned that the neurosurgeon and plastic surgeon were really impressed with the shape and progress of growth of Elias' head. She also mentioned that there is a possibility that Elias will have to wear a helmet until he is two since the head plates can continue to shift until then. When we went to the most recent helmet fitting, the technician had said that Elias will likely have the helmet on until at least one year of age, which surprised me. I was told that around Christmas to January Elias would be getting rid of the helmet. However, it really just depends on growth spurts. Elias is at a lull for growth right now. He is way too interested in trying to figure out how to crawl and get all of his big brother's toys lying on the floor.
When we take off Elias' helmet, his head is looking great. His scar is minimal and his blonde hair, which isn't thick, covers it up. You have to search for the scar to find it.
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| 9 months old. Can you spot the scar? |
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| With the helmet on. |
Elias was in a photo shoot for the Snider Orthotics Design Company. Snider Orthotics is where we go to get helmet fittings. I think that they were updating their website and we just happened to be there while the photographer was there. No toddlers and tiaras for us. I haven't found the picture yet but if I do, I'll be sure to post it.
Elias had his first swimming lessons today (aka I'm in the water holding Elias while he splashes around). For those who may be curious, Elias can do any activity that any kid his age would engage in. We just have to take off his helmet while he swims. The time we use to have his helmet off during swimming lessons counts toward the hour he is allowed to have his helmet off during the day. Elias did really well in the water as he didn't cry once. His mother, on the other hand, was NOT a fan of the cold water.
Up Next in January:
Follow-up appointments with Neurosurgeon/Plastic Surgeon
Helmet Fitting
Waiting for a growth spurt
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