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.
https://chrissyharlow.mygc.com/Home

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.
http://tmiller.origamiowl.com/parties/AliceinCranioland87702/how-to-build.ashx

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)

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

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
http://www.youtube.com/watch?v=k6e-4k18zLc

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

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.

https://www.youtube.com/watch?v=k6e-4k18zLc

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!

https://www.youtube.com/watch?v=iR4ZReczojo

https://www.youtube.com/watch?v=N001zAeFOHk

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