2nd Cranioversary!!

3rd Birthday! 

This post is just shy of a month overdue but I was motivated to write after receiving a message from a fellow cranio mom last night. The main point of this blog was to keep friends and family updated on Finn's progress. But I also wanted it to serve as tool for fellow cranio parents and I am glad it is doing that. Receiving a diagnosis that you've never heard of can feel very lonely at first! I found reading stories of what others had been through very reassuring. I am thankful we live in an age where Google can link someone to this blog and Facebook can allow them to message me... especially when that someone is seeing the same doctors we did!! I am so glad a cranio mom found me and I hope I can ease the anxiety she is experiencing.

Anyway, as the title mentions, we just celebrated Finn's second cranioversary. It's hard to believe that two years have passed. Before I give the medical update, I will gush for a second about how smart I think he is, how independent he has become and how much he loves (or has grown to love :)) his baby sister.

We've been busy chasing these two around but we did make it in to see Dr. Williams (plastics) last month for Finn's annual check up. It was pretty consistent with his one year post op appointment but we are leaning a bit more towards the likely-hood of a 2nd surgery. I know that probably seems crazy and well it is... but probably not as crazy as you think. From a neurological standpoint, there is no ICP (intracranial pressure), no developmental delays, etc. But from an aesthetic standpoint, there is room for improvement. A second surgery would be nowhere near as invasive as the first. Very minimal cutting of the skull... if any at all. The primary focus would be softening the cone-like appearance of his head and building out his temples. If you look back at this post showing what was done during his original surgery, you can see where they cut into his skull to pull his forehead back. Well a ridge has formed where the cut was made and Dr. Williams believes they will be able to shave that down a good bit. You're probably thinking that you've never noticed that before... and most of the time you don't. But it's pretty obvious to me! His temples were also corrected during the first surgery but the improvements didn't seem to stand the test of time. I don't blame the doctors for this. It's hard to predict how heads will change and his surgery was done much later than it probably should've been.

At Dr. Williams's office for check up with sissy
(Don't compare your kids but notice the difference in head shapes)

Now there is still a chance that things will change over the next few years. (A second surgery wouldn't be done until he was at least 5 years old.) And at that time, it would ultimately be our decision to go ahead with the surgery or not. I struggle with the fact that it would be for aesthetic reasons and that it shouldn't matter what he looks like. I do think he is pretty perfect as is but you know what I mean. It puts us in a tricky spot. At first, it was impossible to think about ever having to go through anything remotely like that again. Well time has eased that anxiety ever so slightly and I think we trust his doctors to advise us on what is best. But he will also be much older and more aware and probably able to remember it.

So we will wait. We will give him time to grow. We will give his face some time to change and in two more years his head shape may seem less severe. For now we will just be grateful we have a happy, healthy, smart boy... even if he snores like an old man.

And fellow mom, if you are reading, don't let this post scare you. All cases are unique and your little one is in the best hands!! You too will be on the other side soon enough!!

Update

Well it turns out that having two kids does make blogging harder! So sorry for the lack of updates. We are adjusting to life as a family of four! Finn's baby sister Katherine Alice arrived on December 26th at 5:09pm. We are in love!!

She is affectionately known as Baby K around here thanks to Finn who is shaping up to be a very sweet big brother!

She is happy and healthy and we are grateful!! I don't want to say her delivery was "easy" but in comparison, it was much easier than Finn's. They say that is common with the second!! 

Finn was born at 41 weeks, 2 days and weighed 8lbs 12oz. His head was 14.75 inches. Katherine was born at 39 weeks, 3 days (induction) and weighed 7lbs 14oz. Her head was 13.25 inches. I think that made the biggest difference! And of course the head was our biggest concern. Well for now it looks perfect! It is amazing to see the difference in shape when looking at Finn's baby pictures. I really believe his cranio was undiagnosed for a number of months. In the photo below (3 months old) Finn's forehead appears to already show some signs of bossing. This didn't look alarming to me at the time because I had never heard of craniosynostosis but now I can see it.

Since I last wrote, we had our visits to Dr. Williams (plastic surgeon) and Dr. Reisner (neurosuregeon) I would say the neurologist appointment went better than the plastics. Dr. Reisner saw no signs of pressure in Finn's skull. Phew! And he was pleased with his development overall. He was pleased with my report from Finn's teachers also but we are all still on the lookout for any signs of delay. Right now he is mastering the alphabet and numbers and we're not worried! Dr. Reisner said we can plan to see him again in 2 years! 

Dr. Williams on the other hand we will still see yearly. He has a few holes in his skull that haven't filled in since surgery. Dr. Williams prepared us for the possibility of another surgery down the road to fill these in. (Around age 4 or 5.) It is much less invasive than a CVR but scary nonetheless. Dr. Reisner didn't necessarily think a second surgery was eminent. He has faith that time will do its job. So, I guess time will tell. We also expressed some concern about Finn's forehead. I am still concerned with its appearance. Obviously I am super critical and want it to be perfect since we put him through a major surgery! I just can't tell if I am being overly critical or not.

Here is a picture from last week. Again, its a bath tub shot since it's most visible when his hair is went or pulled pack. You can see he still has a very prominent forehead. Thank goodness for that hair!

Dr. Williams and Dr. Reisner advised us not to worry since there are still a lot of factors at play as he grows. This isn't necessarily what he'll look like for the rest of his life.  So the long story short is - we will watch him closely over the year(s) and call the neuro with any concerns. And then at age 4 or 5 he will have another CT scan to see what the skull truly looks like under all that hair! 

For now, we'll just enjoy our little blessings and the chaos of two kids.... three if you count this guy.