Tuesday, December 31, 2013

Reflecting on 2013

We received the best gift this year, our sweet Alice was born!  I wasn't thrilled about my daughter being born in 2013, I guess you could say I am slightly superstitious of the number 13, because of my grandfather and how he felt about it. (long story) So...as I reflect back on 2013 I could easily talk about all the negative things that happened, I could blame the number 13 for all the bad things ...and say 2013 was a terrible year...BUT I am not...instead I am going to look at the positive things...

Our family

My mom has pulled through some very scary episodes that she was hospitalized for and thankfully is on the verge of getting some answers so that we can avoid it from happening again. My sister survived a very scary car crash, thank God!  My Grandmother has been in and out of the hospital but has pulled through and fought her way back up. She has been such a trooper! I am so thankful for all of these things...sad that they have happened but grateful that they are still here with me. Grateful for a strong support system, and my wonderful family and friends.

Alice's 1st Christmas

Of course how could I leave out the reason for creating this blog? Alice being diagnosed with Craniosynostosis. Yes it was a very scary and emotional trying time for us...but I am grateful that she was diagnosed with something that COULD be treated. Happy that it was caught early enough that we were able to get her early treatment. Blessed to come across Dr Magge that was able to give Alice the surgery that we wanted for her, endoscopic surgery. We didn't have any options, she had to have surgery...and if she had to, we knew in our hearts that fighting for the less invasive surgery was what we wanted for our baby. So thank you 2013 for proving to me that you didn't bring just negative things...but there was a light on the other side.

When I first found out about Alice's diagnosis I was a basket case. A friend of mine said some things to me that helped alot. She said,

"I know it's hard but when you are worrying, try to focus only on the things that you can change or have control over. Focus on doing the best you can for her right now and doing as much research on the condition, etc. See if there are other families who have been through it before.
Just knowing what to possibly expect will help. The unknown is the scariest"

Her words really helped me to look at it from another perspective and look at it as a way to help other families as well and focus on helping my daughter in any way I could. My friend, who I mentioned above, had been through the unthinkable, losing her sweet girl to a rare disease called Niemann-pick. I learned alot from her and from her sweet girl. Her daughter touched the lives of thousands and helped others in so many ways. Her blog inspired me... the way she shared her story, shared her sweet daughter with us, how positive she was and the way she took such a heartbreaking diagnosis and used it to touch the lives of others and spread the word about Niemann pick disease. Check out her blog to read more about sweet Kaitlyn and Niemann-pick disease at this link.  http://niemannpick.blogspot.com/  Thank you Deanna, you inspired me to look at the positive and to focus on what I could control. I know our situations are completely not related and there is no comparison to what she and her family have been through...but I just wanted to acknowledge her and her beautiful daughter Kaitlyn for helping me.

After speaking to her, I knew others would be as upset as I was initially and I knew that I needed to record everything I could to help others that were searching for guidance and information. If others were searching for help on the internet, I hoped that my blog would help them and hopefully even lead them to early treatment for their child. This is another BIG positive thing about 2013.  I have received so many messages and it makes me feel so good inside that I was able to do my part to help them...validation that documenting everything was the right thing to do.

So instead of looking at these things that happened in 2013 as bad things I look at them in a positive light. I am so fortunate to have my family...my mom, dad, sister and my grandmother and extended family. I feel beyond blessed to have my husband by my side and my three sweet babies. I look forward to 2014... to celebrating Alice's 1st birthday and I pray that things continue to progress with Alice and that she will not need any more surgery. As long as things continue to go well, Alice will be able to remove her helmet permanently by the end of the summer and hopefully we can put this whole 'Alice in Cranioland' journey behind us. I look forward to making many more memories with my family and cherishing every moment I have with them.

Checking out the lights

Happy New Year everyone!!!

Monday, December 2, 2013

Motherhood and decisions

Being a mother is such a blessing and so rewarding, I love being a mother to my 3 babies. Until you become a mother, you just have no idea how much your life changes. The way you look at the world and the decisions you make...everything is completely different. You worry about your children all of the time, about every little thing....and I think Alice's diagnosis and surgery made me worry even more. I look at Alice's head and worry constantly...terrified at the idea of her having to have another surgery. Worried that her skull isn't growing correctly. I have been nervous for weeks approaching her followup appointment.

Alice's first Thanksgiving

Today we saw Dr Magge in DC for Alice's followup. She is 4 and a half months post op. Dr Magge took measurements of her head today and her skull is progressively growing the way that is should...Thank goodness! He think she looks great and that she will continue to do well. Alice was a little older than most babies that typically have endoscopic surgery...but in his opinion, Alice had a milder case of Left Coronal Craniosynostosis. ..so that should help things. We were originally told Alice would be in her helmet for 18 months....or so we thought. ..but it turns out the we misunderstood Dr Magge! Alice will be in the helmet until she is 18 months old...which has her being out of the helmet next summer...woo hoo! That is excellent news considering we thought she would be in it until she was almost 2. So we are SUPER EXCITED about that and I expect a huge celebration that day! Praying that this whole Cranio experience will be behind us that day...

Alice at her appt today with her doll. A lady makes these dolls for all of the kids. They are wearing little hospital gowns....what a sweet thing to do!

For those of you out there that may have stumbled across this blog in hopes of making a decision between endoscopic surgery or CVR surgery for your child. I just want you to know how happy we are with our decision. I chose not to put my baby through a reconstructive surgery and I fought hard for this endoscopic surgery. I met a sweet lady that made up my mind for me on a cranio forum. She simply said...

" I don't know how much you have read about endo but it tends to have a shorter hospital stay and recovery period, less blood loss and although the helmet can be challenging most babes and parents get used to it pretty quickly. I don't know of any endo parents who wish they had done CVR but I do know some CVR parents who wish they had been able to do endo(myself included)."

This is what ultimately made my mind up and made me realize that fighting to the endoscopic surgery was what I needed to do. So I did....I fought, I cried, I waited , I cried, I got angry...but I won...lots of hard work on my part with the help of others but we got our baby the treatment she needed. A friend of mine said..."endoscopic surgery stops Craniosynostosis in it's tracks" and it does. I started to see my baby transforming right before the surgery. ...and I know that she would have only gotten worse if we had waited 6 more months for the larger surgery. Instead once the doctor opened that suture up and allowed the brain and skull to grow as it should...her deformation stopped....possibly preventing further problems such as eye problems, pressure on her brain, developmental problems etc. Please consider endoscopic surgery if your child is given that option....not everyone has a choice.

Snoozing on the drive home

Friday, November 22, 2013

Fundraiser for Alice

Two very sweet and thoughtful ladies are hosting ONLINE fundraisers for our sweet Alice, to help us pay for the surgery and hospital bills as well as the ongoing costs for Alice's helmets which are necessary to avoid further surgery.

Check out all the wonderful things Gold Canyon and Origami Owl have to offer (individual links below) The fundraisers will run through December 6th. Thank you so much for supporting our family.

To shop at Gold Canyon by Chrissy Harlow click the link below. *Note* You must click SHOP beside Baby Alice's Fundraiser in order for the sales to count.

A few examples of what Gold Canyon has to offer....perfect for Christmas gifts!

To shop at Origami Owl by Tammy Miller click on the link below and begin shopping directly at this page.

Just a few ideas of what you can create with Origami Owl. You can customize however you want...you are not limited to just these choices.

This is my necklace. Charms for my 3 babies and a birthstone for my husband and I.

*If you would like to donate directly to the Alice in Cranioland fund, also for medical bills, there is a DONATE button on the right side of the blog. (Must view on desktop to see donate link)

Wednesday, October 30, 2013

Thoughts of a Cranio Mommy

Yesterday I went to followup with the neurosurgeon who did my back surgery almost two years ago. He works for the same practice where Alice was referred initially. I really didn't think that I would feel emotional about being back in that building but I did... I guess it's because I went there that day and remember sitting in the waiting room, not nervous at all...assuming that this was just precautionary and everything was fine. Even as the doctor was talking to me...I thought to myself...ok, worse case scenario she may need a helmet to help mold her head in the right shape. I truly was blindsided and unprepared to hear the words that came out of her mouth. I sought a second opinion a week later and got the official diagnosis then, but her journey started on that first day...the day I heard the word CRANIOSYNOSTOSIS...cranio what?!? It was completely foreign to me...I couldn't even pronounce it. Why are mothers not educated about this so they can look for this in their newborn babies to help get them treatment...the earlier it is caught, the better.

1st trip to the pumpkin patch

I have beat myself up over the months about Alice's diagnosis. I knew something wasn't right with her forehead...and I shrugged it off to childbirth against my better judgement. It was so unlike me to do this...I usually bring up every concern to the pediatrician. I guess I felt like I was being paranoid and that it would correct itself in time...I had no knowledge that a baby's skull could fuse too early. Thank God that she was able to have the endoscopic surgery...if she hadn't, I may have never been able to sleep again. I look back at pictures from when she was weeks old and see it...why the heck didn't I say something? I kick myself everyday for not looking into it sooner but I am thankful that she was able to get the less invasive surgery even if I really did have to fight for it.

Apple picking in the mountains

When I began this blog I wasn't sure which direction we were going endoscopic or CVR (cranial vault reconstruction) All I knew is that I felt a strong feeling that I needed to document everything and put it out there and I am so glad that I did. I have received so many messages and had so many people reach out to me...some telling me that they follow Alice's story and they talk about Alice and keep their friends updated. Others have contacted me about surgery questions....but what really got me and made me realize that this blog is doing what I sought out for it to do...was when I received a message thanking me for creating the blog...and this is why...(message below)

" I wanted to thank you as your blog helped my son's early diagnosis …I knew something was not right with his head but didn't worry too much as Dr.’s attributed it to birthing process and said it will be okay in few weeks…

Just out of curiosity I started googling on symptoms and bumped on your blog….his head shape and other facial asymmetry was similar to pictures you had posted….that’s when I knew it was more serious and started talking to specialist …"

I can't even describe the emotions I felt when I read this...happy tears instantly rolled down my face. This was confirmation that sharing Alice's story was the absolute right thing to do. Originally after Alice's first appointment, when I knew the there was a possibility that she would be diagnosed with Craniosynostosis and require surgery, I shut down emotionally. I kept it to myself, I didn't want to share it with many people...I was a mess. I made privacy changes on my personal networking pages, like facebook,  so that only immediate family would see what was going on when I was ready to share it. I finally did announce it to some...and waited until after Alice's surgery was over to share it with others. Why? I don't know...I guess I feared the worse...I was terrified at the thought of losing my precious baby girl. From the second I saw her face, she was perfect...she truly was a piece of my family that I didn't realize we were missing. She has blessed us and taught us so much in her short 9 months here with us. She has done so well and really is the most easy going and laid back baby. I don't know what I would do without her...and the thought of losing her terrified me and consumed me...up until the second they took her out of our arms and back to the operating room....it wasn't until I saw her face in the recovery room where I finally took a breath. Even then...I wasn't sure she was going to be ok...for 5 hours I watched her lay limp and white as a ghost...I was terrified. Why wasn't she waking up...was she ok? Did she need a transfusion? Would I ever see that sweet smile again? The fears just kept coming...I needed to see my baby girl's eyes and see her smile, so I would know that she was ok. In the middle of the night, she answered my prayers. She was playing with a toy and smiling around 3am, about 12 hours after surgery. I have been through so many hard times in my life...many within just a year or two apart from each other....but hearing the words "your child needs surgery" sends a chill to your spine like no other...I have never felt the emotions that I felt that day...the fear, the thought that I would give my own life to save hers if I could. We are so blessed that Alice came along and is able to help us spread the word about Craniosynostosis. Thank you God for allowing me to be the mother of this sweet baby girl.

My advice for parents out there...if you feel in your gut that something isn't right with your baby or child do not hesitate to bring it up! Even if your doctor says its nothing but you feel in your gut that it is something, get a second opinion or third opinion. Even after diagnosed you owe it to your child to get many opinions. If I had accepted the word of the first doctor....where would we be? I was told that we should watch her for a few months and see if things got better or worse...if I had done that she would have missed the possibility for the endoscopic surgery all together. I can't stress how important it is to get many opinions! You have to be your child's advocate...you don't just accept the first thing that is said to you by the first doctor. Fight for your child!

Alice's Halloween costume. She won a $25 gift card in a costume contest!

Pumpkin Baby :-)

Alice with her big brother and big sister

Tuesday, September 24, 2013

Alice is 2 months Post Op!

Alice had her 2 month post op in Maryland yesterday. Of course since we had to travel we made a couple of stops while we were up that way. We took the kids to the Air and Space Museum and the Natural History Museum in Washington DC, which is only about 20 minutes from the office in Rockville, MD. It was a beautiful day and we had a great time.

Dr Magge walked in and was really immediately impressed at how well Alice looked. He needed to be reminded of how she looked before surgery because he said from looking at her straight on he really couldn't tell she ever had Craniosynostosis. I pulled up some pictures on my cell phone...and then he pulled out his digital camera so he could take comparison pictures of her journey. I told him about my fears of more surgeries and about stories I have come across online. I really needed him to ease my fears....and he did. He looked at me and smiled and said "I'm really optimistic"...for a second time he had said that! That made me feel great. I asked him if the amount of time he originally said for helmet therapy still stands and he said that we should just count on her being in the helmet up to 18 months, which would take her almost to her 2nd birthday, he said if it's less than that then it is but for us just to count on that. The main reason has to do with the type of Craniosynostosis that she had...with Unicoronal Craniosynostosis, one side of the head grows outward when the other side is fused...and since Alice's surgery was done at a later age, she would need more time for the other side of her skull to catch up. The helmet puts pressure on one side while allowing the side that was fused to catch up and even out. As she continues to grow and her brain pushes her skull outward things will just continue to improve...but for complete transformation it may take quite some time. Her brow bone on the affected side is going to be the last part that comes forward...and hopefully it will. This would be one reason for another surgery...but unless it is drastic, I will not be putting my daughter through anything more than what is necessary. So our prayers were answered and our fears were eased...we follow up with him again in 3 months. Alice is being scanned for her second helmet tomorrow...she should be receiving that in a few days. Her first one is really getting tight on her...so it is definitely time! Thanks again for everyone's support! Alice says Thank You :)

If you haven't checked out Alice's You Tube video here is the link

Friday, September 6, 2013

Life in a Helmet

So...the first few weeks in the helmet were a little rough for Alice and a little hard for me as well. She had a hard time sleeping...I had a hard time adjusting. I would plan her hour out of the helmet around our outings, sometimes pushing that hour to two hours...which was only hurting her in the fact that she will be in the helmet for a longer time period. I had children ask me "what's wrong with her"...and grown ups ask me what the helmet was for...others come up to me telling me that their child had to wear a helmet too (but for different reasons, for positioning/flattening) and even ran into someone who's child has Craniosynostosis. I ordered decals for her helmet and starting using her helmet as a billboard to educate others. The majority of people are too scared to ask and will just tell us how cute she is but just don't know how to ask why she is wearing the helmet. So I figured by putting the blog info and a facebook Alice in Cranioland logo on there, people in this day in age could just pull it up and find out. Lately I have just been telling people as soon as they approach us, which is pretty often when we are out. I have enjoyed educating people and giving them a summary of what Craniosynostosis is and the options available for treatment and how we had to push for her endoscopic surgery. The reaction to what I tell them is heart warming...it restores my faith in humanity...seeing their genuine concern and how happy they are that she was able to get the less invasive surgery. I see pregnant women look at her and her helmet and hope that it educates them so they will look at their child's head and not be naive as I was, thinking it was from childbirth. If I had only known, Alice could have been helped sooner, which wouldn't have affected her facial structure very much and we wouldn't have had to "fight" for the endoscopic surgery since she missed the typical window for that, which is 3 months old or younger. I am so grateful and hopeful that she is on the other side of this. At Alice's last helmet adjustment the doctor thought she looked great already and felt that in his opinion she may not be in the helmet as long as originally stated by the neuro doctor. Overall, Alice has adapted amazingly well to the helmet. It seems like I was worried for no reason. We will see what he says in a couple weeks when we head back to Maryland for another post op. Thanks so much for all of your support for Alice...it really means alot to us. We will update the blog after we see Dr Magge.

Almost 7 weeks into helmet therapy

Friday, August 9, 2013

Alice in Cranioland Video

Here is a video I made about Alice's Craniosynostosis Journey. Please help us raise awareness by sharing this video. The earlier Craniosynostosis is caught the sooner these sweet babies can be treated. Parents need to know that there are doctors out there that will do the endoscopic surgery past 3 months of age. We hope our story helps to get that information out there.


Wednesday, August 7, 2013

Coronal Craniosynostosis Info

Bird's eye view of Alice's skull before her surgery.
You can see the right side has grown outward like it's supposed to
and the left side that is fused is unable to grow outward.

Helmet therapy is coming along. Alice has been such a good baby through all of this. She really has such a wonderful disposition about her. She had another helmet adjustment this week. Hanger is who we go to for the helmet. Daniel is wonderful...he really takes his time and makes sure the helmet is fitted correctly and that she is comfortable. He took measurements of her head yesterday and the left side of her head has grown outward 5mm since her first measurement before the surgery. So that's good news, it's moving outward like it's supposed to be and the right side of her head has pressure on it from the helmet to keep that side held back so the head can shape correctly. She will need a new helmet approximately every 3 months. She has helmet adjustments every 2 weeks...for up to 12-18 months.

Alice's first bite of baby food...she's not a fan!
Like her facebook logo? :)

Here are a couple links to short videos about about endoscopic treatment of Coronal Craniosynostosis and helmet therapy. Most doctors only do this endoscopic procedure up to 3 months of age. When we found out about Alice's diagnosis we were told we were outside of that window...but there are a few doctors out there that will push that window up to 5-6 months, which Alice barely fell into. We had to put alot of work into getting it approved but thankfully it worked out. Not everyone will benefit from the endoscopic procedure but thank goodness they were willing to give it a shot with Alice and we are hopeful! We are praying that she can avoid another surgery. So please keep those prayers coming!



Thursday, August 1, 2013

Thank You

I just wanted to take the time to thank my family and friends that brought us dinner and gave us gift cards when we got home from the hospital with Alice. It was so nice not to have to worry about dinner for a few days. Also thank so much to those of you that have sent things to Alice, I can't tell you how much we appreciate everything! Many of you have asked me if there was anything you could get Alice or if you could do anything to help. We are looking into a fundraiser in town to help with the ongoing medical bills for her multiple helmets and surgery/hospital bills. Thanks so much for your support and prayers and the many of you of you who reached out to us and offered to help us in any way.

Our three babies 

Tuesday, July 30, 2013

Post Op-timism

Since we had to go back to Maryland for Alice's appointment we wanted to make a mini vacation out of it and decided to go to Baltimore and check out the Inner Harbor and the Aquarium. It had been years since Jason and I had been there and my mom came with us too! Cassidy and Trevor loved the aquarium, especially the dolphins. The rain forest area and the dolphins also caught Alice's eye. She fell asleep through most of it though. It was nice to do something as a family and have some fun after all the stress and worry we have been through. We have been completely consumed since getting Alice's diagnosis and we haven't been able to do much with the two older kids on their summer vacation. So we really enjoyed having some quality time with them. It's hard to believe that Alice is officially 6 months old now, my how the time has flown by!!

Alice sleeping through some of the aquarium

Alice wide awake at the dolphin show

By the water at the Inner Harbor

Aquarium photo

I am so glad that my mom was with us when we went to the post op and she was able to meet Dr Magge. My mom and dad were unable to be there for Alice's surgery since they were caring for our other two children but we were so grateful that my mother in law and her friend were able to be there for Alice's surgery. They traveled from NY to be there for us.

 Dr Suresh Magge - Alice's 2 week post op visit

Dr Magge came in and took measurements of her head and checked to make sure her helmet was fitting correctly. He said it needed to be adjusted so that there was a little more contact on the right side of her head, to essentially hold that side back and allow the other side to even out. (we had her helmet adjusted today) He thought she looked pretty good and also noticed that her facial structure had improved. With Unicoronal Craniosynostosis the face often deforms since one side of the skull cannot grow outward it affects the eye, nose, mouth, forehead and even the ear on the affected side...and it would have only gotten worse over the next few months if we would have had to wait for the larger more invasive surgery. We knew going into this endoscopic surgery that there was a higher possibility of Alice needing to have another surgery, which would be a very large ear to ear incision. By her having the endoscopic surgery at a later age than most babies, her odds of another surgery only increased. So I asked Dr Magge...if she needed another surgery, at what age would that be. He said that he feels optimistic that she may not need another surgery, he feels her results will be good since she was a mild case to begin with. Praise the lord! That is the best news I have heard in a long time.

Alice's new decals on her helmet

As we were leaving the office I patted myself on the back...I have never felt more proud of myself. I refused to accept that we had missed the window for the endoscopic surgery and I fought for her. I would have gone all the way to Texas to get the surgery if that's what we had to do but thankfully we found Dr Magge. All of the phone calls, emails, research and hard work finally paid off. I know it is not a guaranteed thing and that there is still a possibility of another surgery but hearing that Dr Magge is optimistic makes me feel great.  I sure hope he is right and that the helmet does what it needs to do and that we are on the other side of this Cranio-land journey!! I can't thank each of you enough for your prayers, it means the world to us. 

If you would please add my Grandmother to your prayer list I would appreciate it very much. She is in need of ongoing prayers....and my mom could use some prayers for her surgery tomorrow too. Thanks so much.

Thursday, July 25, 2013

The Helmet

So like I said in my previous post, I was emotional about the helmet at first...Jason wasn't too hot on it either. It's like, we fought real hard for this endoscopic surgery and we weren't really thinking ahead to the other challenges...we just knew we wanted Alice to have the less invasive surgery done. It took a pretty long time to get the helmet fitted properly...lots and lots of adjustments. Alice didn't seem phased by the helmet initially but now she is starting to pull on it and cry at times when she is uncomfortable or hot. The doctor did say that her body will adjust to the helmet in a few weeks...at least there are vent  holes in it.

Alice Mary - 4 days after her surgery

Her first day in her helmet - 6 days after surgery

We're supposed to work her up gradually over a few days to wearing the helmet. (1 hr on 1 hr off, 2 hours on 1 hour off, 3 hrs on 1 hr off, and so on...) Have her take naps without it initially, then naps with it and then sleep in it overnight. (she slept in it for the second time last night) She is supposed to wear it a total of 23 hours a day! I really didn't think it would be that much and I will admit I needed to adjust to it and gradually work up to it myself. I hated that my baby's head was covered up, that I couldn't see her beautiful eyes very well and that I couldn't put hair bows on her anymore. I really don't care what people think when they see her in it but having to answer questions and stuff was hard. So I decided to order a decal for her helmet with the blog web address and will also be ordering extra stickers/cards to hand out so I can briefly explain it and then guide them to the site for more info. After all my whole point of creating this blog was to educate people about Craniosynostosis and help those going through this journey and let them know the steps we took to get our daughter's treatment. Of course I had to add a feminine touch to the helmet too! I have quite a few flowers and bows that I have applied velcro to so I can switch them out accordingly to match whatever she is wearing. I have faith that this helmet is going to help Miss Alice Mary and the endoscopic surgery was the best decision for her.  Alice has already been through so much in 6 months of life, more than most people go through over a period of years. I am praying that things go up from here...

Big sister Cassidy feeding Alice a bottle

Hanging out with her big brother Trevor

Taking a nap with Daddy

Pink flower :)

Alice with her Care Package from Cranio Care Bears

Alice with her headband from Cranio Angel Network

Saturday, July 20, 2013

Power of Prayer

I just wanted to update everyone on Alice. She has had a pretty good week. She's had some rough nights since we have been home from the hospital but overall she is doing pretty good. She got fitted for her helmet this past Thursday. We are supposed to break her in slowly to wearing it. She absolutely hated the helmet at first but now she is adjusting to it. She gets very sweaty in the helmet but hopefully her body will adjust. She really is such a good baby and has handled everything really well this past week. It was really hard on poor Mommy and Daddy but Alice doesn't seem very bothered. It's just like everyone kept saying...babies are so resilient and they bounce back so fast. After we got home Thursday from the helmet place, I felt myself getting kind of down again. It wasn't until my dad called me to see how the appointment went when all the emotions hit and I just burst out crying. I don't know why I am so emotional about it, I guess I just hate that she has to wear it but then I keep reminding myself what the alternative would be, the much larger reconstructive surgery of her skull. Then a friend reminded me that we are still in this journey, it isn't behind us yet and it was ok to feel emotional about things still. It's just been alot...and when you add this to other things going on, it's overwhelming...but we are trying to take one day at a time. This endoscopic surgery was very hard on Jason and I and really most of the family. I pray that the worst is behind us, because I barely made it through this without collapsing , I just don't know how I will handle it if Alice has to have another surgery. We are working on decorating her helmet and personalizing it. I will post pictures soon!

Alice taking a nap in her helmet for the first time

Also, I try to keep this blog for Craniosynostosis awareness purposes only so I can help other families going through the same thing. I usually keep my personal stuff limited to my facebook page, and keep it very brief on the blog, but I do want to take time to thank each of you that have left comments on my facebook page, messaged me in forums or texted me. We appreciate every comment, prayer and offer to help us. Everyone has been so sweet and kind to us. It really means so much to us! I can't say that enough!  The prayers definitely helped sweet Alice and us through a very difficult time.

 I also asked for prayers for my Grandmother on my facebook page recently and I want to thank you all for your prayers for her as well. She has been going through a difficult time and I am so happy that she will be able to go home next weekend after being in rehab! I believe in the power of prayer..so thank you so very much everyone!!!

Alice - 1 week post op

It's hard to believe this is what she looked like exactly a week ago

Wednesday, July 17, 2013

Review of Craniosynostosis and Our Story

For those who are just finding this page or need a summary of what steps we went through to get to where we are today, here is a review...

May 29th 2013 - Referred to neurologist


June 11th 2013 - 1st opinion


June 18th 2013 - 2nd opinion


June 21st 2013 - fight for endoscopic surgery


July 8th 2013 - Hope - 3rd opinion


July 10th 2013 - Surgery is scheduled


July 12th 2013 - Surgery


What does Alice have?

 Left Coronal Craniosynostosis

Picture of Alice's skull
You can see on the right side of this picture, the suture is fused.
In the endoscopic surgery they opened this suture/recreated the suture

What Is Craniosynostosis?

The normal skull consists of several plates of bone that are separated by sutures. The sutures (fibrous joints) are found between the bony plates in the head. The function of the suture is to allow molding through the birth canal and adjustments for the growing brain. As the infant grows and develops, the sutures close, forming a solid piece of bone, called the skull.

Craniosynostosis is a condition in which the sutures close prematurely, causing problems with normal brain and skull growth and premature closure of the fontanelles (soft spots). Premature closure of the sutures may also cause the pressure inside of the head to increase and the skull or facial bones to change from a normal, symmetrical appearance.

What are the symptoms? The most common sign of craniosynostosis is an oddly shaped head at birth or by the time the child is a few months old. For example, the skull may become long and narrow. Or it may be very flat and broad in front or back or on the sides. This oddly shaped head may be the only sign of craniosynostosis.

In rare cases, the deformity causes pressure to build up on the baby’s brain. This can cause brain damage and can make the baby develop more slowly than other children.

The treatment of craniosynostosis requires surgical correction. Craniosynostosis occurs in one in 2000 births.

The different types:

Sagittal Craniosynostosis

Sagittal Craniosynostosis is the most common type of Cranioysnostosis (40%-58% of all cranio cases) and effects more males than females. Early closure of the sagittal suture results in scaphocephaly. Infants will often have a protruding forehead, an elongated head, and protruding at the back of the skull.

Coronal Craniosynostosis

Coronal Craniosynostosis is the second most common form of Craniosynostosis and effects mostly females. Coronal synostosis may occur on either side or may be bilateral. Infant will often have an elevation of the eye socket, flattening of the ridge of the eye and displacement of the nose on the affected side.

Metopic Craniosynostosis

Metopic synostosis is the third most common form of Craniosynostosis and is associated with trigonocephaly with a
male preponderance. The metopic suture is located between the soft spot and the nose. Early closure of this suture results in trigoncephaly. Infants will often have a prominent ridge down the middle of the forehead, a pointed forehead, and eyes that seem too close together.

Lambdoid Craniosynostosis

Lambdoid Craniosynostosis is one of the most rare type of Craniosynostosis. Most cases of lambdoid craniosynostosis
are unilateral and result in asymmetric posterior
plagiocephaly that needs to be differentiated from positional

Frontosphenoidal Craniosynostosis

Frontosphenoidal synostosis is one of the most rare types of Craniosynostosis. It is the small suture close to the eye socket. Premature closure of this suture will result in flattening on the side of the front of the head and can cause an indentation near the temple or eyebrow bones. Frontosphenoidal appears almost exactly like coronal craniosynostosis but the coronal sutures are open. This is believed to be one of the most undiagnosed forms of cranio as a child can appear to have coronal synostosis or positional plagiocephaly but the CT scans will show the sutures are not fused and the child will not be diagnosed correctly.

Multiple Suture Craniosynostosis

Craniosynostosis of multiple sutures accounts for approximately 5% of craniosynostosis. A child can have two or more sutures fused prematurely and is a more complex form of craniosynostosis. Complex craniosynostosis frequently causes increased inter cranial pressure and is associated with developmental delay and a high rate of re-operation.

Positional Plagiocephaly (Flat head syndrome)

Plagiocephaly (PLAY-gee-oh-SEF-uh-lee) is a flat spot on the back or side of a baby’s head. It is caused by pressure on the bones of the skull before or after birth. This usually happens because of the way a baby likes to lie (their positional preference) in their first few months of life.

There are many things that could cause positional plagiocephaly.

Children with multiple medical problems or delayed development may have a hard time changing positions. They are more likely to develop positional plagiocephaly than children who can move around more.

Some infants have a strong preference to look in one direction. This can lead to a limited range of motion in the neck from muscles being tight. This is called torticollis. Babies with torticollis might be more likely to develop plagiocephaly than other babies, since they always rest on the same spot on the back of their head.

Premature infants are sometimes more likely to develop plagiocephaly. This is because their skull bones are softer than the skulls of babies born at full term. They also tend to move their heads less often.

Positional Plagiocephaly does not require surgery and can usually be fixed by repositioning of the babies head while they lay down or sleep and some may require the use of a helmet.


For most infants, however, surgery is the primary treatment for craniosynostosis. The type and timing of surgery depend on the type of craniosynostosis and whether there's an underlying syndrome.

The purpose of surgery is to relieve pressure on the brain, create room for the brain to grow normally and improve your child's appearance. A team that includes a specialist in surgery of the head and face (craniofacial surgeon) and a specialist in brain surgery (neurosurgeon) often performs the procedure.

Traditional surgery

The surgeon makes an incision in your infant's scalp and cranial bones, then reshapes the affected portion of the skull. Sometimes plates and screws, often made of material that is absorbed over time, are used to hold the bones in place. Surgery, which is performed during general anesthesia, usually takes hours.

After surgery, your infant remains in the hospital for at least three days. Some children may require a second surgery later because the craniosynostosis recurs. Also, children with facial deformities often require future surgeries to reshape their faces.

Endoscopic surgery

This less invasive form of surgery isn't an option for everyone. But in certain cases, the surgeon may use a lighted tube (endoscope) inserted through one or two small scalp incisions over the affected suture. The surgeon then opens the suture to enable your baby's brain to grow normally. Endoscopic surgery usually takes about an hour, causes less swelling and blood loss, and shortens the hospital stay, often to one day after surgery.

If your baby has an underlying syndrome, your doctor may recommend regular follow-up visits after surgery to monitor head growth and check for increased intracranial pressure. Head growth will be routinely monitored at well-child visits.

The day we came home from the hospital.
Two days after her endoscopic surgery
WOW! What an improvement!