4th Cranioversary!

Well it appears 2 years have gone by since this little blog got some love! But I'm always reminded to revisit as the anniversary of his surgery approaches! 11/12/13 was the big day.
4 years later, I am happy to report that "no news is good news!" This handsome devil is already 5 years old and blows our minds daily. His love of Jeopardy would make great-grandma Alice proud! He has taken pre-k by the horns and can't wait to go to kindergarten. We are so grateful that he is growing into a smart, young boy! A good friend of mine was just recently commenting on how smart he is. She also joked that it's funny that it was his head we worried about for so long and now look at him! I told her they made too much room for his brain to grow! We are truly blessed!

Anyway, back in medical land, I'm not even entirely sure the last time we visited CHOA... for something cranio related that is! I guess that is a good thing! We've moved on to the wonderful world of ENTs instead. Back in February, Finn had his tonsil and adenoids removed. Just like mom and dad did when they were kids! It was a funny feeling walking into the same waiting area and pre-op rooms. This time was a little less emotional for mom knowing the surgery ahead was far less invasive and risky but maybe a little more emotional for Finn since he was much more aware of his surroundings. But he did great!
And there was one moment when mom did get a little emotional! It was after one particular knock at the door. Assuming it was another nurse or anesthesiologist, I opened the door, only to find it was Finn's neurosurgeon, Dr. Reisner and his PA Blair. They "just happened to see his name on the day surgery schedule and wanted to say hello." I was moved to tears! It was the smallest, yet most thoughtful gesture. One you can only expect from a place like CHOA! It also instilled that confidence that Finn was in great hands with his ENT, Dr. James Thomsen from PENTA. As you probably guessed, Finn handled the surgery like a total champ! (Way better recovery than his mom's back in 1990!!) He was back and better than ever in no time at all! And now you can actually sleep in the same room as him because he doesn't snore!

                              

A few months after Finn's tonsillectomy, I was asked by two dear friends to be the speaker at the Children's Healthcare of Atlanta Fairytale Tea and to share Finn's story. The Fairytale tea is a mother-daughter event that has taken place here in Atlanta for years. I had always imagined Katherine and I attending as she got a little older but I was so flattered to be asked to speak! It was a special day for me! I know I've told the story countless times but I realized I'd never done so in such a public (face-to-face) setting. Nerves aside, I got through it and it really was an honor to share our experience and to raise awareness for cranio. As friends, family and readers know, we feel very fortunate to have a place like CHOA right in our backyard and we do our best to support it whenever we can. I couldn't help but end my speech with the story of Dr. Reisner and Blair's visit.

Thanks for checking in! I'll be sure to report back if anything changes but for now we'll get back to our regularly scheduled programming of work, school, sports, traveling and holidays!! 

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.

1st Cranio-versary!

Dear Finn -

Happy 1st Cranio-versary to my brave little man!
Today marks 1 year since your CVR (cranial vault remodeling) surgery! It might seem like a funny thing to "celebrate" but we feel it is important to remember that day.

I often wonder what kind of questions you'll ask me, in the future, to try and better understand what you went through. I hope this blog will help me remember the finer details. But you can be confident that I will remind you how strong you were and how much strength you taught me. You thrived in the days and weeks following your surgery and everyone was amazed by you. I was so proud to be your mommy.

I will remind you of the outpouring of love and support from friends and family near and far. Your friends came to visit, their parents brought meals and those far away sent more presents than I've ever seen! You were, and still are, so loved.

It is amazing to think of all you have accomplished in the last year! In some ways your are that same sweet baby boy you were then, but yet you've grown so much. You're not a baby anymore. Everyday you come out with a new word or show a side of your personality that makes mommy and daddy laugh and smile.

You have off from school today for parent teacher conferences. (Because somehow you are old enough to be in school!) So it is a perfect day to celebrate being a happy and healthy boy. Daddy and I are so grateful that you enjoy school and seem to be doing well. We (kind of) joke around that we are glad we made room for that brain to grow!

Thank you for starting every day with your contagious smile. I hope you continue to teach me how to be gentle and loving and strong and brave at the same time. (And soon you can teach your baby sister too!)

Wuv you

- Mommy

* We see the neurosurgeon and plastic surgeons in the coming weeks for his 1 year post op appointments. I will be sure to update the blog, with the doctors notes and before and after pictures, when we do.

School picture - October 2014

2 days post op

28 weeks!

Great news from the perinatalogist this morning! Baby girl Mylod's head is looking as it should and we have no reason to suspect cranio at this time. The shape and circumference are both normal.  We were confident that Finn's condition was a fluke but you never know. So it is a huge relief to hear this! The doctor said there is no reason to go back for any additional ultrasounds! Hooray!

This doesn't mean cranio can't develop down the road but we can be fairly certain it won't develop in utero. As I have mentioned before, we will never be sure when Finn's sagittal suture fused. But hearing that Baby #2's head isn't abnormally large is comforting since we think Finn's may have resulted in lack of room in the uterus.

That's all for now! We can't wait to meet this active little one. We think Finn is going to be an excellent big brother!

Almost a year ago...

My mind has been all over the place this week but I keep coming back to one thought... where we were a year ago. It was this week last year that Finn was officially diagnosed. We saw neurosurgeons, plastic surgeons, nurses, pediatricians, ultrasound technicians. I felt like I lived at CHOA and was becoming a sponge for all things cranio. I will hear songs on the radio that came out last September and it will take me back to those short but yet eternal drives to Scottish Rite.

Now here I am zipping him to and from school 3 days a week, listening to him say a new word every day and planning his 2nd birthday. He has amazed me with his strength this past year. He is also smart, funny and sweet as can be. He truly makes my day better and puts a smile on my face when nothing else will. You would think there is nothing to worry about. But the thought of returning to all of these doctors for his one year post-op visits still gives me anxiety. All of the same concerns are still there that were 6 months ago. Is his skull healing? Is his head shape what the doctors had hoped it would be? Did they over-correct or under-correct? Will he need another surgery?

He is scheduled to see his plastic surgeon on November 20th and his neurologist on December 10th. I will be sure to update after those visits. His official cranioversary is Wednesday, November 12th and, as luck may have it, school is closed that day! We'll have to plan something special and fun that day!

As for baby # 2! She is growing bigger by the day and we are all very anxious to meet HER! That's right - Finn is getting a baby sister! Our 20 week appointment with the perinatalogist could not have gone better. Things all appear to be fine and "her head is perfectly egg shaped" according to the doctor. I will have another sonogram at 28 weeks to make sure things are still looking good. But we are blessed that she is appears to be healthy and that there are no causes for concern yet!

Slacker

Well it appears I have taken a brief (3 month), unplanned hiatus from the blogging world!

Apparently blogs get pushed aside when you sell your house, move and tackle the first trimester of pregnancy #2.

First major cranio update is that our 6 month post op appointment with our plastic surgeon, Dr. Williams, has come and gone! 

It was pretty uneventful... which can be considered a good thing and a bad. Good news is he is continuing to heal fine and showing no negative side affects. Bad news is that I got the sense the plastic surgeon was hoping to see a more drastic change. Now I should clarify that he didn't say that specifically... that is just what my gut tells me.

We are supposed to see the plastic surgeon every 3 months. This was our 3rd post op visit (1 week, 3 month and 6 month.) He told me there was no reason to bring him in at 9 months and that we could wait another 6 months and see him at 1 year post op. Most people would probably take this as a good sign. Call me skeptical but I sensed that it was because he wasn't seeing enough progress. Specifically in head shape.

He reminded me, after voicing my concern about this head shape, that there are still a lot of variables at play. Mainly that all of the other sutures are (or should be) open and allowing expansion. His brain will also stop growing soon believe it or not. But his sutures will not fuse for a few more years and his face will continue to grow for many more. All of these things can affect the overall shape of his skull. So it is still early and it is still hard to predict exactly what our final outcome will be.

So we wait. I am anxious to approach the 1 year mark, or the cranioversary. Mainly because I adore his neurosurgeon and that will give us an excuse to see him. But also because there is the strong chance they will order another CT scan to check out what is going on inside. Don't get me wrong - the actual CT scan, and exposure to all those x-rays, does not excite me. Our first one was nothing short of torture. But the images they produce are outstanding. I am a visual person. I find myself massaging Finn's head and imagining what it looks like under all of that sun-kissed blonde hair he is sporting these days. So to be able to see it will be crazy. I will be sure to post those images if we get to that point.

The second big update, though not entirely cranio related, is that baby Mylod #2 will be joining us later this year. 

Finn holding up his siblings first picture in front of our new house.

We are so excited! And with that excitement comes fear. Often times I read about parents who struggle with the thought of having a 2nd or 3rd child because they don't want to risk having another cranio baby. Of course, we fear the same but neither Brian or I felt our family was complete so we'd have to take that gamble. We are hopeful that because Finn's condition wasn't related to a syndrome or genetic that the odds are in our favor that we will not have a 2nd cranio baby. But the fear and concern are there and after we heard that precious little heart beat at the 8 week OB visit, it was the first topic of discussion. Believe it or not, my OB had never heard the word craniosynostosis before. He was intrigued though! And also very compassionate. He also assured me that the perinatologist who I would be seeing would be all over it. 

I am 16 weeks now so a month has already passed since my 12 week visit. On the day of my first ultrasound I filled out the mounds of paper and answered all the questionnaires. The word "craniosynostosis" wasn't on any of those check lists. Thank goodness for that handy "other" line at the bottom of the form. I promptly filled out that my first born was a sagittal baby, diagnosed at 11 months. When I met with the perinatologist, who had heard of cranio before, he was even more compassionate than my OB.  He was sweet to say that at the point the baby looked "perfect" and we shouldn't unnecessarily worry. He did recommend additional ultrasounds for peace of mind though. Aside from just the 12 and 20 weeks that they recommend for healthy moms with routine pregnancies, I will likely get another at 30 weeks and then a possible 4th if anything look fishy.

Now the upside is that we'll know ahead of time. The downside is that there is nothing we can do about it in utero. We would be able to treat it sooner and maybe take a less invasive route should surgery be necessary. But there is still no answer as to what is causing it. If you recall, Finn was born at 41 weeks, 2 days. weighing a whopping 8lbs 12oz.  One of the theories out there about cranio is that it can be caused in utero if there is not enough space for the baby's head to grow. While he wasn't diagnosed until late in his first year, we don't actually know when Finn's suture fused. 

My OB has already discussed inducing me early but I don't know how I feel about that just yet. I think I would rather wait and see how the pregnancy progresses and make the call closer to my due date.

Here is one more recent visual update on Finn's head. His scar is barely noticeable except when he is in the bath. So I snapped this photo the other night with his cool hairdo. It has really gone from a thick, pink line to a thin, hairless one. 

We've had a great summer thus far. Finn, aptly named, is officially obsessed with the pool and is swimming like a fish! I am happy to be out of the woods in pregger land. I am blessed to have a beautiful new house to call home. (And space for baby #2) And I am excited to head to NY next week to see family and friends and watch my brother participate in his first full Ironman in Lake Placid, NY!! And I will definitely try to be better with updates as Baby 2 grows!!