Update about Alice's eyes

Alice has been going to the ophthalmologist regularly since her Cranio surgery. They first brought up concern with her eyes when she was about 2 years old. The doctor wanted to operate but we tried alternative options. We tried some vision therapy exercises on and off for a while. It seemed to help but the problem never went away. I started noticing it getting worse again recently so I brought her back in to get checked. They recommended surgery again but this time on both eyes. Her main problem is V pattern exotropia. Her eyes are just not working well together. It's very common for children with Craniosynostosis to have eye problems, specifically the kind that Alice has, Left Coronal Craniosynostosis. 

It isn't easy putting her through more surgery, that's why I've tried to put it off for so long but I knew she needed to have it done. I was sick as can be leading up to it, even though I knew it was so much smaller than her Cranio surgery, it didn't make it any less nerve wracking. 

She had surgery yesterday April 14th. She was incredibly brave but did talk to me a lot leading up to the surgery date and asked lots of questions. They worked on 2 muscles in one eye and one muscle in the other eye. She was a trooper and did amazingly well. She barely even shed a tear, even though I know she hurts. She woke up and said “That wasn’t so bad” I swear these cranio kids are so tough! My other kids definitely wouldn't have handled it so well. 

She was in bed most of the day after surgery and wouldn't eat. She was hurting and her throat was bothering her from surgery. I finally got some applesauce in her before she went to bed last night. She woke up hungry this morning with a little better appetite. She was pretty puffy and her eyes were very red this morning. She had a post op appointment today. They took measurements and did eye tests. She is having some double vision periodically but overall she had a great report and expect her to heal well. Her eye alignment measurements were much improved. She will follow up in 6 weeks and we will know her final results then. It could take up to 2 weeks to heal and the redness to go away. Thank you all for your prayers and concern, it means a lot. 

example of V Pattern exotropia

7 years post op

Happy Cranioversary to our sweet girl!

I'm not sure how it's possible that it's been 7 years since that emotional July day. She's doing amazing and we are so grateful that we were able to find a doctor that would perform the endoscopic surgery on her. If I could do it all over again, I wouldn't change a thing. My gut instinct led me to fight for the endoscopic surgery and I know it was the right decision for her. I pray that she continues to do well and that her journey with 'Craniosynostosis' is in the past. Here'a a little throwback vs this year on July 4th. She's getting so big!

July 4th 2020

2013 - a week before surgery

“Something is wrong with my eyebrows”

I knew it would happen one day, the day she’d look in the mirror and ‘see it’.  Left/Right Coronal Craniosynostosis and the asymmetry it causes is much more obvious in the mirror image. Tonight when getting ready for bed she looked in the mirror and said, “Something is wrong with my eyebrows, they look weird”.  I asked her what she meant. She said “One is higher than the other one” We have talked to her about the surgery and how the doctors ‘fixed her head’ but not in a lot of detail. I told her that the Craniosynostosis was on the left side of her head so the left side may not look exactly like the right side and that she was beautiful.

We always said that if her asymmetry bothered her as she got older, then we would address that then. We will see but we are thankful she has done so well and hasn’t ‘needed’ any other surgery.
With that being said, I wanted to follow up about her eye condition. As of now, we are just waiting it out and seeing how her eyes do. They seem to have improved so we are not rushing into surgery. If it starts to get bad again and bothers her then we will revisit that option.

I hope everyone is doing well and staying healthy in these crazy times.

I ordered this shirt a couple years ago from Cranio Care Bears and had forgotten about it until recently 💕 

I can’t believe our sweet girl is 7. As I edited her birthday pictures, reality hit. Picture after picture I couldn’t deny what I was seeing...

Last week I took Alice to the ophthalmologist because of concerns. Just when I think we are in the clear, I get a reminder that craniosynostosis will follow Alice forever. Alice will very likely be having eye surgery in the near future. She started having very noticeable problems again about a month ago. The drifting has gotten bad and it’s really bothering her. I am so reluctant and just want to avoid the surgery but my gut is telling me she needs to have this done.

When she was cleared a while back, it was because she was able to control the drifting. She could pull it back in on cue. So they said she no longer needed the surgery. Now it is happening so often and she is not controlling it well. I don’t want her being bothered by it and blinking constantly. We’ve tried some vision therapy stuff (like we did before) but it hasn’t helped yet. We are going to give it more time then make a decision. 

I tried so hard to hold back the tears in the office that day. The word ‘surgery’ just triggered me. I couldn’t fight the tears. Every time I talk about it, I cry. The thought of her having to go through something else, after having such a big surgery when she was a baby, just kills me. No parent likes the thought of their kid being put under anesthesia. The thought of my other kids having surgery on anything is upsetting as well, this just triggers me in a different way. It’s so hard to put into words how it makes me feel. I know this is a very small surgery compared to her craniosynostosis surgery but it doesn’t make it easier. I knew my friend in Texas would understand how I am feeling so I messaged her right away. Her son also had surgery for craniosynostosis when he was a baby so she “gets it”. She wishes, like I do, that we could just put this all behind us. 

It took me a week to find the words. Just wanted to give a quick update Please keep her in your thoughts. I will keep you posted. 

Happy 7th Birthday Alice!

Can’t believe this sweet thing is 7 years old!

Long overdo update

Hey everyone! I apologize for such a long gap in posting. Time is just flying by!

It's hard to believe Alice will be 7 years old in a couple of months. I remember in the beginning of this journey, it seemed like time moved SO slow. Waiting for a diagnosis was agonizing, then waiting for the surgery date, in tears everyday...then the LONG year in the helmet. I'm not sure how time has flown by since then but it has and here we are with a sweet, beautiful smart little girl who made it through and is doing amazingly well. I am so thankful that I listened to my gut instinct and pushed for the endoscopic surgery. If I had to do it all over again, I would still make the same decision.

We took Alice for another opinion a while back. It was actually the first neurosurgeon that diagnosed her at VCU, Dr Gary Tye. We wanted to hear his thoughts all of these years later. He had ZERO concerns. The plastic surgeon also came into the appointment. She took pictures and told us she thought she looked great. She did mention that at any time in the future we wanted to do a small 'fill in' surgery, we could always do that but they both agreed that the average person would never know she had anything wrong. She still has a small indentation on her forehead but it has come SO far since she came out of that helmet. Of course we see it, because we know what she went through but to this day Alice has never asked about anything looking different. She knows about the surgery and the helmet but has never seen anything in the mirror that she questioned. So we will follow up as needed as far as her cranio.

We also had a followup at the ophthalmologist. They thoroughly examined her and said that she had outgrown the eye problem that she had and that she no longer needed to have the surgery to have it corrected. Oh my goodness that was a relief. Again, I followed that mommy gut instinct and chose not to have the surgery. We did some simple eye exercises with her and she ended up outgrowing the issue. I am not the type that's going to immediately jump and do exactly what the doctor says. I will get second and third opinions and do my own research for my child. I do the same for myself with issues I've had in recent years. I try my best to avoid surgical intervention unless it's absolutely necessary. Thankfully Alice was able to avoid the surgery and is doing well. I pray that she will continue doing well. She is a healthy, normal little girl and I'm so proud to be her Mom.

Thank you to all of you that take the time to read my blog. I appreciate your comments and messages so much. All I wanted when I started was to help other parents that were in my shoes. I truly hope it has.

We took Alice to Disney World for her first time about a month ago. Here is a picture of her with Jasmine and Aladdin. Seeing that smile just melts my heart.

4 years post op - neurosurgeon appointment

Alice is a little over 4 years post op. (surgery date- July 12, 2013)
Each year near her "Cranioversary'  I take photos of her, so that I can document her progress.
Here are a couple from July 2017.

Alice had a followup today with her neurosurgeon, Dr Magge. It's been almost a year since we had seen him. We were past due to see him, she should have seen him in the Spring. This was the longest we have gone without seeing him since her surgery. I was very anxious to say the least.

I know many look at her and don't know she ever had surgery or the ones that do know may think 'she had surgery, she's fixed now' The thing is, her skull isn't 'normal' like the average skull. Yes he made room for her brain to grow but he will continue to follow her into her teenage years. 

Why? He's monitoring the growth of her skull, making sure it charts within normal range and that growth doesn't slow down. If it does, then that would be a red flag. Dr Magge also wants her to continue to be monitored every year by an ophthalmologist and checked for Papilledema, which is the swelling of the optic nerve as it enters the back of the eye due to raised intracranial pressure, which would be a red flag also. This is all pretty standard for most cranio children. 

Dr Magge took several measurements today of her head. Her head on the left side is about 12mm less than the right side. But her head growth is good overall, continuing to progress on the growth curve. He did discuss how he could surgically fix the left side of her forehead, an orbital advancement, an ear to ear incision, basically a reconstruction of the front part of her skull, forehead and eye sockets BUT I just can't put her through something like that solely for a cosmetic reason, I would only agree if it was medically necessary, meaning signs of intracranial pressure.

I talked to him about how I read that when the sinuses start to form, that things will improve even more, physically. He looked at me and smiled and said " I forget I'm talking to the cranio expert" lol. No I am definitely not an expert but I am very knowledgeable on the subject since June of 2013, I have done TONS of reading. He does think things will continue to improve for many years to come, as she gets older.

Overall it was a great checkup. I will always worry about her but I feel a little sense of relief after seeing him again after so long. I am so thankful she was able to have this less invasive endoscopic surgery and that she is doing so well. She has no delays and is a very smart little girl. Her head/face is not perfectly symmetrical but who's is, cranio or no cranio.

We followup with him again in one year. 

Facts about endoscopic surgery

The one thing I have tried to do is just stick to the known facts about endoscopic surgery when trying to help others. I had to research so much to get accurate factual information (instead of opinions being thrown at me) The main reason I started this blog was to make it easier to find information about endoscopic surgery. I take this same approach on social media and on support groups. All I want to do is highlight the benefits of endoscopic surgery and make people more aware that it can be done up to six months of age. I genuinely want to help people. I have learned SO much in the past 4 years since Alice was first diagnosed and I just want to share what I know.

Dr Mark Proctor is a well known neurosurgeon in Boston. Alice was scheduled to have surgery with him initially however insurance denied it because they found a doctor closer to us that would do endoscopic surgery on her. He trained under Dr Proctor, so it was a huge blessing.
Dr Proctor did a study about the benefits of endoscopic surgery for each type of craniosynostosis. This is based on his actual experience, about actual cases. It is very informative and full of FACTS. He offers both types of surgeries. I do feel like everyone needs to see a doctor that offers both types of surgeries or get 2nd or even 3rd opinions.
Here is a link to the article...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4729850/

Since my daughter had unicoronal (left coronal) I need to point out how much I agree with this study. Everything that is stated has been true for our case. Dr Proctor states one of the early benefits of endoscopic surgery for coronal babies is that the nose and mouth asymmetry starts to correct quickly after surgery. Yes! It does, that is one of the first things we noticed. It was amazing to see how things shifted so quickly after the suture was opened like it should be. Also in the before picture of Alice, her left eye socket was significantly larger than her right one. This was also corrected. The brow bone correction is slower with endoscopic surgery, but I was ok with that. Knowing that immediately after surgery, my daughter's brain had room to grow. I didn't have to wait and worry for months wondering if she had pressure and also continue to watch her facial features worsen. The flattening on her brow has continued to improve each year, just as Dr Proctor stated. You have to be patient. I understand that's hard, but it is amazing to see the changes. Endoscopic surgery is a pretty natural approach, it essentially recreates the suture so that the brain can grow without being restricted. The helmet then helps to shape the skull.

The before and after photos speak for themselves,
It is truly amazing to see how far she has come.

With that being said, when searching for a surgeon who offers endoscopic surgery please make sure they are experienced. A HUGE component in the outcome of your child's results is helmet therapy. For coronal babies it is very important that they stay in the helmet for as long as possible. Alice wore hers until she was 18 months old (1 year post op) Helmet therapy is crucial after having endoscopic surgery..

This a video I made and poem I wrote for Alice's 3 year Cranioversary (3 years post op)
It shows her progress over the years. I thought I would share again.

Following my heart again...

A few weeks ago Alice returned back to the ophthalmologist because I noticed her eye drifting more often. I see it most often when she is looking in to the distance at something. We were told to call them if we noticed that things were worse, so I did. She has strabismus, more specifically intermittent exotropia. Strabisbus is something that is very common with Craniosynostosis, unfortunately. They want to do eye muscle surgery within the next few months to prevent more problems. I'll be honest, it took everything I had not to fall apart the second that she said the word 'surgery'. The whole idea of it obviously triggers some things for me...even though this surgery is much smaller, it still doesn't sit well. I've been pretty upset about it and didn't want to tell anyone. I suppose it's my way of pretending it's not happening. We were thinking about waiting until February after the holidays and after her birthday but then we decided waiting was just harder...so we scheduled it for early December.

In the mean time I started noticing Alice's right eye not acting quite right either. I was not totally confident that fixing one eye would magically fix the problem. I researched online and started reading about Vision therapy. I started wondering if this would be a possibility for Alice. My heart would simply not accept that surgery was the only option for her. I started calling all over the area and could only find one optometrist that offered it. I scheduled her for an evaluation asap. She was evaluated today and he feels that her eyes are not that bad and is VERY confident that she will improve, with some simple exercises he showed me. He did also note the right eye was a little off as well. He didn't think her eyes were bad enough to suggest therapy sessions 1-2 times a week like many other patients do. We will followup with him in 4 months and if in that time she has not improved, we will revisit the surgery option. We have nothing to lose by giving this a try.

Please keep our sweet girl in your thoughts. We only want the best for her. With her skull surgery, I followed my heart and pushed for another opinion. I felt the same calling in this circumstance. I can only hope and pray it helps her.


Below is a video of us practicing one of the techniques we learned today. Focusing on something in near proximity to essentially cross her eyes. The hope is this will help her eyes and brain to work better together. You can see at the end that her right eye tried to focus on me and her left eye goes out.

UPDATE: March 2017
Alice is now able to bring her eye back in on command when it drifts. This is wonderful news! She is not leaving it out there anymore and I know that the vision therapy exercises have helped with this!!


https://youtu.be/5BIKvYDwR5E

3+ years neurosurgeon followup

Alice in the atrium lobby at the hospital where she had surgery

Alice had a followup with Dr Magge today. She is about 3 years 2 months post op. She has been out of her helmet for about 2 years and 2 months.
So just a brief summary of her visit...
Overall, Dr Magge didn't have any immediate concerns, meaning her brain still has the room it needs. Her head is gradually growing, although she is still in the 10th percentile. He is going to continue to monitor her. We discussed symptoms to look out for, which would indicate signs of pressure in the brain. We followup again in 6 months. We are hopeful that she won't need any more surgery but we know that is not a guarantee, just as with an 'cranio' child, no matter which type of surgery they had...the most important thing is that as soon as they opened her skull up during endoscopic surgery, her brain immediately had room to grow. Any other surgery recommended would most likely be for cosmetic reasons, which we wont consider unless it's for medical reasons.

We went to a Nationals game after her appointment today...she had SO much fun!!!
She loves baseball and wearing caps (I think her helmet had an influence on that lol)

Always a Beauty to me

I have mentioned in previous posts, how the longer you wait to treat unicoronal (left or right) craniosynostosis, the more the facial features are affected...causing more asymmetry and eye problems, in particular by waiting to have CVR. Which is why being diagnosed and treated in a timely manor is so important. Six months of age is the cut off for endoscopic surgery. I feel very strongly about treating craniosynostosis as early as possible, to prevent even more medical problems.

Alice has done amazingly well. She was 5 and a half months old when she had surgery. She did so well with her helmet, without that, she would not have the results she has today. I can't stress enough how important it is to keep that helmet on 23 hours a day, and the longer the baby wears it, the better. Most doctors recommend wearing it up to a year, which I think is VERY important to the end result. Alice wore hers until she was 18 months old, she wore it for almost exactly a year.

3 years post op and we are starting to see a few minor issues. At Alice's followup at the ophthalmologist, they observed her left eye drifting. This only seems to happen when she 'stares off into space' or becomes tired. We followup in 6 months, but if she starts drifting more often, then we need to call them. I can just hope and pray that it doesn't get worse. I can only imagine how much more her eye would have been affected if we had waited 6 more months to have the larger surgery. Babies with coronal, in particular, should be followed by a ophthalmologist. I hate to think of her having a surgery for her eye muscle, but if she does, I know it's a much smaller procedure than her skull surgery and she will be ok. Will keep you updated.

Coronal babies will never have perfectly symmetrical faces (really, who does?) but I'm ok with that, and it doesn't matter which surgery they get. I know by treating her sooner rather than later (vs 1 year of age, as recommended for CVR) not only gave her room for her brain to grow but it also helped to improve her facial asymmetry from getting even worse. As soon as Alice had the surgery and they opened her skull up how it was supposed to be, her facial asymmetry started improving right away.

Alice was dealt a card in life that I wish she hadn't been, but it has taught me so much. Not only have I learned about a condition that I never heard of. I also learned how strong, brave and resilient these cranio babies are and just how beautiful they truly are... scars, imperfections and all.

Alice will always be a 'Beauty' to me. Which is fitting because she is really loving Princess Belle these days and insists on sleeping in her dress and crown.

She follows up with her neurosurgeon in September, we are very eager to hear what he has to say...

Always a Beauty to me

3 years post op

It's so hard to believe how far we have come since we first heard the word Craniosynostosis. It felt as though time stood still that day...and everyday leading up to surgery. To this day, I get emotional about what she went through and it's sometimes hard for me to talk about it without tearing up. 

When we were told she would be in a helmet for up to a year that seemed like eternity. but here we are 3 years post op and it's been 2 years since she's been out of her helmet. It flew by and she's doing great. All that worry and just look at her, I couldn't be more proud. Now I'm not saying I don't worry. I will always worry about her, I do with my other children too, it's just a little more of a worry with her. So forgive me if I hover around her more than the average parent. I will always be protective of her and of her skull. 

We are so happy with her results and still so grateful that we fought for the endoscopic surgery and that she was a candidate for it. Thankful to Dr Magge in Washington DC, thankful to our orthotist at Hanger. Without them, it wouldn't have been possible. 

I made a video and wrote a poem to celebrate this special and emotional day.

You can view it here...

https://www.youtube.com/watch?v=vnfHhy3SVMk 

The mind of a Cranio Parent

It is such a whirlwind of emotions, this whole cranio journey. It's hard to believe it's almost been 3 years since I first heard the word CRANIOSYNOSTOSIS. In the moment it felt like my world stood still. I still get teary eyed thinking about everything that Alice went through and the emotions that I experienced the first year of Alice's life....anger, fear, joy, happiness...geesh it was quite a journey!!

Cranio has changed me as a person...for one, I will never be able to just admire a baby anymore and say "awhhh"...I will inspect EVERY baby head, child head and even adult head. (it comes w the territory lol) You too will become a 'head picker' through this journey...

Another thing that will probably never go away, is how much you worry about your cranio baby. It does not matter what surgery they have or anything...you WILL worry your heart out. This is normal. Even almost 3 years later, I worry, not quite as much as I did in the beginning, but I do. You'll worry about your baby's head, appearance...everything. Just remember YOU are doing everything you can to make your child 'better'. Surgery is necessary to correct this condition. (except for some metopic cases)

The thing we loved about endoscopic surgery is that we didn't have to wait. The Doctor released that suture and instantly, her brain had the room in needed to grow. That was why we pushed so hard for endo...I just wanted her problem treated as simply and as quickly as possible. The idea of a cut in her skull VS a reconstruction of the skull sat better with me. The skull is essentially how it should have been at birth, and the skull and brain can grow as it should.

Here is miss Alice being so proud of her new haircut! (her 1st haircut was by the neurosurgeon)

She'll be 3 years post op on July 12
We couldn't be happier with our decision of endoscopic

Craniosynostosis Endoscopic Surgery Support Group

Please join this group and post any questions or stories about Endoscopic Surgery for Craniosynostosis. Hoping to help others just starting this journey with Craniosynostosis

https://www.facebook.com/groups/523481684505643/

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 time...it 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!

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

           

                                           

3 years post op

   

4 years post op

5 years post op

6 years post op

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.
http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html

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 AliceinCranioland@gmail.com or contact me at www.facebook.com/AliceinCranioland.

One of her favorite gifts

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.

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 her...it 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 lol....like 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 perplexed...like "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 her...my 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.