The Journey is Never Over

When you are diagnosed with craniosynostosis you hear the saying "welcome to the other side" or something a long those lines. You hear about the other side of craniosynostosis quite frequently. To me, it implies that after surgery you don't have to worry about craniosynostosis anymore and your child is now okay. Your child is "cured" from craniosynostosis. 

While it is a lot easier to handle being on the other side of craniosynostosis it doesn't mean the journey is over. It doesn't mean that your child will never have to have another surgery. It doesn't mean that you don't have to see doctors and specialist or worry about your child anymore. If anything after the surgery starts a new beginning of things you have to do.

Today my son is 3 months post-op and want to know what we are doing? Well, we are preparing for another surgery. We just got out of an eye doctor appointment and because of the craniosynostosis my sons right eye muscle is weak. The only way to fix that is through surgery. Then later we have an appointment for physical therapy. The craniosynostosis caused a head tilt so we have to go to physical therapy twice a week to try and straighten it out which the eye issue can also be a factor to the head tilt. 

Next week we are done with physical therapy. Well at least for now. They will do a check up in three months to see if he has improved and I need to do exercises with him until he is two. We have only one month left of helmet therapy because his head will be healed and we don't have to worry about him bumping it. No more than usual at least. We see a developmental nurse every couple months just to make sure there are no delays. It is more common that a baby that has no other conditions with his craniosynostosis (like Eli) can have developmental delays. We will be having those until he is three. In a couple months we have to go see the eye doctor again before we schedule his surgery. This time his surgery is going to be a lot less invasive than his skull surgery. It is only a 30 minute procedure and we will go home that day. Still though, its ANOTHER surgery! I feel like this is a never ending process with the craniosynostosis. What next?

I am starting to realize there will always be worry about another surgery. Not only with his newly discovered eye issues but what if another suture closes? It is rare that it happens but not impossible. Also there are many other surgeries we might be faced with. We might have to have holes in his skull closed if they don't close by themselves. We are also keeping track on the other side of his skull to make sure that develops the way it needs to. If it doesn't then we might need a surgery for that. There can also be sinus surgeries and a list of other surgeries that craniosynostosis can be the root cause of.

Now don't let me depress you and your journey. Being on the other side is better! We know without a doubt that we can take on any surgeries needed. We know his brain has room to grow now. The doctors appointments are not so bad, most of it is just keeping him on track. Plus a lot of babies are one and done babies. They have one surgery and never have another issue from their craniosynostosis. I'm just saying there is still a lot you have to do. Don't think that the surgery will magically make your life simple. Don't think that you will never have any other issues from the cranio. Don't think that your time of seeing doctors is over. You have been so strong and brave for your child but it's not over until the fat lady sings. Or at least until you are cleared from all doctors, most importantly your craniofacial surgeon and your neurosurgeon.

I have a lot of issues with letting myself feel frustrated. I built up this dream of the other side of craniosynostosis. One where I will not have to see doctors for this ever again and never have another surgery. I want to let you know, whether it's before or after surgery, it is okay to feel frustrated. It is okay to cry and worry. Its normal to feel like that! Don't hold it in. Talk to whoever you can about your frustrations. If you have other cranio-families you know it's awesome to be able to relate, but your friends and family will understand and let you vent too. You are not alone in this.

With all my frustrations out I want to say  happy 3 month cranioanniversary Eli. I am so proud of you and what you have been through in the first year of life. I am so happy to be your mom and what ever comes our way I know we will handle it. 

Peace and Love,