Friday, January 29, 2016

She really has come so far...

Our sweet Alice turned 3 years old today. I thought I would post a comparison picture to celebrate how far she's come in 2 and a half years. She had endoscopic surgery for left coronal (unicoronal) craniosynostosis when she was 5 months old.

I noticed her asymmetry at birth and I kick myself for not following my gut feeling and getting it checked out sooner. I convinced myself not to worry and that it was just from the birthing process. Thank goodness it was caught in was caught just barely in time for her to be a candidate for the endoscopic surgery. Moral of the story is to always follow your gut feeling!

Wednesday, September 2, 2015

Photo timeline of Alice's journey

I thought I would post some before and after pictures of Alice through her cranio journey for new visitors to this site to see. She had endoscopic surgery for left coronal craniosynostosis at 5 and a half months old. She wore a helmet from Hanger for 1 year (she went through 2 helmets in that time). She is now a little over 2 years post op and doing great!

1 day old

5 days before surgery

recovery room
1 day after surgery
4 days after surgery
1 month into helmet therapy

6 months into helmet therapy

2 months before helmet graduation
1 year post op, all done with the helmet
6 months post helmet
almost 2 years post op

Sunday, July 12, 2015

2 years post op!

Happy 2nd Cranioversary Alice!

I can hardly believe it's been two years since this sweet girl underwent skull surgery. It was the scariest and most emotional thing I have ever had to do, handing my 5 month old daughter over for surgery. The strength she showed me as a baby was truly remarkable. She was smiling less than 24 hours after having a piece of her skull removed. She has come so far in two years! She will be followed by her neurosurgeon for years to come to make sure her skull is growing the way it should be. We are so thankful her Craniosynostosis was caught in time to have the endoscopic surgery option! She is doing wonderful and I would definitely choose this option again if I had to do it over.

Here's the link to my blog about her surgery.

Wednesday, February 4, 2015

Alice's 2nd Birthday & Neurosurgeon Followup

Happy 2nd Birthday Alice!

I can't believe our baby is 2! She has brought us so much joy over the past 2 years. She has truly blessed our family. Alice had a wonderful time celebrating! She had so much fun at the Children's Museum...and she loved her Frozen cake!

We followed up with Dr Magge this week. Overall, he think she looks great and has no immediate concerns. He thought she had made great progress and said she would continue to progress over the next few years. He reminded us that since she was on the older side for endoscopic surgery that her results may not be as good as a younger baby, which we knew going in, but we chose to go with the least invasive option possible, that was really important to us. We didn't want her going through a larger surgery when her medical concerns could be treated with the endoscopic surgery. He thought her facial asymmetry looked great and had improved a great deal. He said that is not something you get with the larger CVR surgery. Those babies may not have a flat spot on their forehead, but their nose and mouth cannot be corrected in that surgery. We did realize that and I am glad that we chose this option...I feel that it prevented further asymmetry of her face and also "stopped craniosynostosis in it's tracks" as a friend put it. 

Dr Magge told us that he will followup with us again in 6 months and track her growth and her progress. He had no concerns this week and felt that there was enough room for her brain to grow...but that it something he will continue to watch and monitor for MANY years to come. Signs for us to look out for would be headaches, restlessness, irritability, etc....signs that would point to pressure on her brain. Things he is looking for is progressive growth of her skull. He takes many different angles of measurements. If at any times she stops progressing or growing at a normal rate, that would be a reason for concern. We don't anticipate this happening and praying she will be in the clear of more surgery. However, we are very glad he is monitoring her so well. 

As always, if anyone that has stumbled across this site and is looking for more information or would like to talk to me about Alice's journey, please feel free to email me at or contact me at

One of her favorite gifts

Monday, September 8, 2014

Neurosurgeon Followup, after helmet

Alice had a followup appointment with Dr Magge today in DC. It was her first time seeing him since coming out of the helmet. It was a pretty horrible drive there in the rain and Alice was not herself....including in the room with Dr Magge. She's at the age where's she's scared of everything...and she DID NOT want anyone touching her besides her family.

Dr Magge thought she looked pretty good. He took head measurements and she had a little head growth since our last appt in June. He could also feel the bone bridging over the gap where he did the strip craniectomy. Which basically means its growing back together. He asked us if there were any concerns with her developmentally or her complaining of headaches or holding her head...and we said no. These things would be signs of pressure on her brain.

He told us that he would be following her for many years after surgery. He also said that just because she had surgery it doesn't mean she is cured of Craniosynostosis. It's something he will have to watch and monitor.

Praying that everything will be ok and that there will be plenty of room for her brain to grow. We will followup with him in 6 months.

waiting to see Dr Magge

September is Craniofacial acceptance month. Please share Alice's story to help us raise awareness. Thank you.

Wednesday, July 30, 2014

Life after the helmet

Going into Alice's surgery all I could think about was getting her the least invasive surgery option, the helmet didn't even cross my mind. But after the surgery was over and I could finally breathe again...the helmet came soon after. I will admit, I was a little sad at the fact that she had to wear it, but happy she could have the endoscopic option. I couldn't believe she had to wear it for a whole year, it seemed like an eternity. At the same time I knew how important the helmet was to her end result.

The feelings I had about the helmet in the beginning quickly subsided. It became part of her. At first it was weird seeing her in the helmet, but after a month or so it was very strange seeing her without it. Alice with the helmet on was our new norm. I honestly had anxiety when it was off, especially as she became mobile. It was truly a blessing during all of those falls when she first learned how to walk.

Love that we can still use her flowers and bows from her helmet

So getting used to the helmet being off has been alot different than I thought it would be. Initially I was excited that it was over...but soon after I started having this urge and want to put it back on really was hard to NOT put it on her...I wanted it on. I was actually sad that it wasn't on. I was so used to her in it...her squishy little cheeks, that sweet flower velcrowed on her helmet...I even got used to the headbutts and velcrow burn I said that was our norm. Even Alice has had some adjusting to do...she was used to have that security of her helmet, she would bang her head on things...walk into things and she would never feel any pain. She's had MANY boo boos and bangs on her head in the two weeks she has had it off. It's like she didn't understand what the feeling of pain was on her head when she hit it. She would rub it and looked "What just happened?"

In the beginning it was hard getting used to holding her with it on, nursing her, rocking her, even kissing her cheek...the helmet definitely intruded on those things a bit...but I got used to it. We learned to work around it and it wasn't a big deal. I can't tell you how much I cherish those things now though...just holding her sweet little head, kissing it, rocking goodness it's just the best feeling. It's like I am reliving the newborn/baby stage all over (except she doesn't stay as still lol)

18 months old

Honestly, the helmet is not an inconvenience at all to the baby. It really isn't...they adapt to it faster than we do. Alice even walks up to me and hands me the helmet now and wants it back on. So for those parents considering endoscopic surgery for their baby that may be reading this...please don't let the helmet deter you. One year in the helmet is a very short time compared to their life span. It seems like a long time at first but it will go by faster than you think. I seriously can't believe how fast it flew by! If I had to choose which surgery to have all over again, I wouldn't hesitate to go the endoscopic route.

We enjoyed decorating her helmet very much. We used her helmet to help spread awareness and I am continuing to spread awareness in any way I can.

We followup with Dr Magge at the beginning of September.

Thursday, July 17, 2014

So long farewell...

Wow...I can hardly register the emotions I am feeling today...

I have been going to Hanger every two weeks for a year now. At the beginning of June, Daniel, at Hanger, did a laser scan on Alice. Four weeks later he did another scan to see if there had been any change. At this point in helmet therapy change is minimal. So Dr Magge wanted to see the comparison to see if the helmet was doing any good at all.

Add caption

From the beginning of June to 4 weeks later, there had been only a half of a millimeter of change over her left coronal area (forehead area) Today compared to two weeks ago there was no change. So Daniel doesn't think the helmet is doing anything and she wasn't benefiting from it anymore. As he's saying these words I'm in disbelief...and wasn't sure if I was going to cry or jump up and down. I made it to the checkout counter and he brought all the girls there up to say goodbye to us. This place has been like a second home...yes of course I would miss seeing them. That has been our life for the past year. I couldn't believe it was over. A flood of memories of the last year and emotions came over me and I just lost it...couldn't hold the tears back.

The little hat they put on Alice when they scan her

The goal was for her to stay in the helmet until she is 18 months of age...she will be 18 months in 10 days. Pretty darn close. She has come so far! The tears I cried today were happy tears, grateful tears and tears of worry...I will always worry about her. The worry didn't stop after surgery, the worry hasn't stopped since. Everyday I would inspect her head wondering if everything is ok...worrying about the suture refusing or another suture refusing...and hoping the bone would grow back together as it should and that there won't be any gaps...looking at her eyes constantly, wondering if it will work itself out or if she'll need surgery on her eye...I mean the list just goes on and on. I can't even explain to you how emotional this whole ordeal has been. As a parent, you worry about your child anyways...but with Cranio it's a whole new level of worry. I am not naive...and am not going to pretend that the chance of a problems arising isn't there...but I know in my heart that we did the best thing we could for her. I am 100% positive that we made the right choice in choosing endoscopic surgery over CVR surgery. Everything else is in God's hands.

I hope and pray that one day every baby will be diagnosed early enough that their parents will also have the ability to choose which surgery they want for their child. That has been my goal from day one, raising awareness...and I will NOT stop trying to do so...

I cannot thank each and every one of you enough for your words of encouragement and prayers over the last year. Believe me, every single one has been noted and it means so much to me. I save and print everything so I can make a scrapbook for Alice about her cranio journey, so she will know about all the people who cared.

Thank you so much to Daniel at Hanger for being so wonderful and taking the time to make sure Alice's helmet was fitting correctly over the last year. I am so grateful!

Celebration video :-)