About a month ago, my father in law asked me if I had ever noticed the "bump" above Mason's right ear. I had never noticed it, but it was defiantly there! I felt kinda bad for not noticing but I guess when you are busy with two kids....you don't always notice stuff. I called his pediatrician and she wanted to see him. She said that it was probably nothing, but that she wanted to refer us to a cranio-facial surgeon to get them to look at it just to make sure.
We had our appt on Friday with the carnio facial surgeon and he has diagnosed Mason with craniosynostosis. Big word...I know. In a nut shell....this means that one of the sutures in the skull has fused together earlier than it should. When babies are born, they are born with several sutures on the skull that are loose due to the fact that the brain will need to grow. Later in life, when the brain is fully developed, they will grow together like they should. Based on physical exam, the surgeon feels like Mason has a 97% chance that his saggital suture (the one directly on top of your head) is fused already. The only treatment for this is surgery to open that suture line back up so as his brain grows there will not be any pressure on the brain. The outcomes are very good and although there are risk, they are very low. Most children that have this, have the surgery and grow to be healthy normal adults. 1 in 2000 births have craniosynostosis, and the cause is unknown. Luckily, being the nurse/worried mom that I am, I had done my homework on skull deformities before the appt. I had secretly diagnosed him myself with craniosynostosis, but of course I was hoping that I was wrong and just an over excited mother. I do not remember alot of what he told me...I was in shock. All I could think about was all of the neuro patients that I took care of in the surgical/trauma ICU and reality was sinking in a little to quick for comfort. The surgeon was AWESOME though! He spent over an hour explaining everything and wants us to come back in two weeks to sit down and discuss the entire process again. He said the initial shock will have wore off and we will be able to really focus on everything. He wants Mason to have this surgery around 6 months of age.
Next steps.... the surgeon did not think that imaging (CT scan or xrays) were necessary unless we wanted to do them. Evidence-based research suggests that physical examination by a neuro surgeon or cranio facial surgeon was 97% accurate. He said that a CT scan would be an extra procedure he would have to go through and he did not want to put him through anymore than what he will already be going through. Although, he assured me that he understands that this makes lots of families uncomfortable, and he is more than happy to order the scan in we'd like. After talking it out with Wesley, we plan to go ahead and get the CT scan done. I think it will ease our minds that they are 100% sure before operating! I know he is 97% sure of this dx, but I would hate for my baby boy to be that 3% and them to start surgery for no reason!
Soooooo....I am waiting on a date for the CT scan and then we will go from there. I have given this all to God and I know that everything is going to work out the way it should. I have faith that he will lead us through this and Mason will have 10,000 angels watching over him! For alot of people I think this would be the scariest thing that has ever happened in their life. For me.....it's just one of those things....it's bad....it's scary....it makes my stomach turn, but we will get through this because we have GOD! Looking back now, God was preparing me for this and I didn't even know it. I was offered a job at the VA recently. I had accepted the offer, did all the paperwork, and was just waiting on my start date. One day, I got this gut feeling that it was not the right thing to do. I didn't really understand why because it was more money and better benefits but I called them and declined the offer. Well, now I know it was God telling me not to take it! The job I have now is VERY flexible and understanding about family/kid stuff, so it will make this road a little easier on all of us!
Well, thank you all for reading! I didn't think I would write that much.....maybe blogging will be good cooping for me?!?!? I will update when I know more! Here are a few pics and video of my sweetness!
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| Mason playing with his horse bouncy thing at Ma & Pawpaws! |
Stopped by to see the girls at work on Friday and they
took this video while I was on the phone! So sweet!
