Thursday, December 18, 2014

Spread some JOY!

Hey everyone! As you know we have been through some hard times with Alice and struggled with her bills. In light of this, My kids are entered in this photo contest and they are in the top two right now. They really need your votes! Winning this would be such a blessing to our family at Christmas time. It is such a wonderful gift you can give my children and it doesn't cost you a thing except for ONE minute of your time. You must have a facebook account to vote...PLEASE share this with your own facebook friends! Voting ends December 21st, 2014. Thank you so much for your support! Here is the link to their photo where you can vote!  http://woobox.com/44pc2r/vote/for/5467043





ho ho ho




Monday, September 8, 2014

Not in the clear, quite yet.

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. She's not in the clear yet...which is something I didn't really expect to hear today...


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 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 headbuts 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!

We enjoyed decorating her helmet very much. Flowers, bows and of course the Alice in Cranioland logo and facebook emblem that links to her blog. 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.



Feel free to email me
AliceinCranioland@gmail.com







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!





Sunday, July 13, 2014

Shop at Alice in Cranioland

Alice in Cranioland now has a shop!





There are several Cranio awareness products and toddler shirts for children who have Craniosynostosis.
There are also some plain products with a butterfly image. This image has a special meaning. When Alice got home from the hospital and she was napping, I went outside and saw this beautiful butterfly in our backyard. Coincidentally Alice LOVES butterflies. I also find butterflies to be very symbolic of Cranio kids...just like a caterpillar had to change and morphed into something beautiful, so did our babies.
A percentage of the money raised will go towards her medical bills, any additional money will be set aside to start a fund. I have been brainstorming for a year about something I could do for Cranio families...I just need a start financially to get it going. We thank you so much for your support!

Here is a link to the Alice in Cranioland Shop
http://aliceincranioland.propellshops.com/index.php?main_page=index

If you would like to donate directly please visit http://www.gofundme.com/a8nrm8

Or via paypal https://www.paypal.com/cgi-bin/webscr?cmd=_donations&business=L4P6DVTCP3D8Q&lc=US&item_name=Alice%20in%20Cranioland%20Fund&currency_code=USD&bn=PP%2dDonationsBF%3abtn_donateCC_LG%2egif%3aNonHosted










Saturday, July 12, 2014

Happy Cranioversary - 1 year post op

When I first found out Alice had Craniosynostosis, I was a mess of course...I couldn't believe my little baby had something wrong with her. I thought that was a horrible feeling...but it doesn't even compare to the day my baby had to have surgery. It was the most heart wrenching and emotional thing I have ever been through. Handing my 5 month old baby over to strangers...and watching them walk down the hall with her...knowing that they were about to drill into my baby's skull...I can't even put into words how hard this was for me. It took every ounce of energy I had not to collapse..I have never been so scared. I cried like never have before...I couldn't stop shaking. I wanted to be with her...I wanted to hold her. Fears took over my thoughts. Would she make it through the surgery? Would she be the same sweet Alice afterwards? Being away from her for those few hours seemed like eternity. I literally ran back to recovery when they called us...and when I saw her there...white as a ghost, laying limp...I think I literally didn't breathe for a couple minutes. I knew she wouldn't look great...but she was so unresponsive, I knew she wasn't in the clear. Was she going to wake up?







After 5 long hours, she did. The strength she showed as a 5 month old baby, amazes me. My sweet girl had a whole drilled in her skull, a strip of her skull was removed...and she was smiling a day later...even with one eye swollen shut. Really?! 







I am so amazed and proud at how far she has come. I am forever grateful that Alice had the opportunity to have the endoscopic procedure, no matter what her future holds, I know that it was the best choice for her. I will pray every night that my baby won't have to endure any more surgery but I know that it is always a possibility. 



My sweet Cranio Princess,
one year later

I know the worry that I feel in my heart everyday is something only a cranio parent will understand. I don't think I will ever stop worrying about her. I thank each and every one of you for your thoughts comments and prayers over the last year. I read through all of them recently and plan to print them out to show Alice one day...so she will know just how many people prayed and cared for her.


One Year Post Op
What a difference!



Here is the link to my detailed blog post about her surgery
http://coronalcraniosynostosis.blogspot.com/2013/07/surgery-story.html





This is a short video I made to help raise awareness and spread the word so that more babies can be diagnosed earlier. Please share this with your friends. https://www.youtube.com/watch?v=FaZ6SzCXDXU&feature=youtu.be



Monday, June 2, 2014

How Far We Have Come!


On the way to DC



As May, June, July approach...I must admit I feel more emotional than I thought I would feel. I am in awe of how far we have come! Last May I remember getting the referral to a neurosurgeon...and then the beginning of June is when we saw the neurosurgeon for the first time...and heard the word Craniosynostosis for the first time. And then July...fighting insurance, waiting for what seemed like eternity and then getting the green light for surgery. It was such a whirl wind of events. I was a wreck, for sure...but I had more strength than I thought I did. I look back and wonder how I didn't just crumble and fall apart. A friend of mine, who I met through a cranio forum, who's child also had the same type of cranio and same surgery shared this with me. It has been so nice to talk to her through this journey...

This is so perfectly fitting for our cranio journey


We traveled to Washington DC today for Alice's followup with her neurosurgeon, Dr Magge. I think every parent who has a child with Craniosynostosis can relate to the nerves that come with each appointment. The construction and traffic on the way up didn't help the nerves at all.

My husband and I had some questions going into today's appointment...so we were eager to hear what Dr Magge had to say. Alice is on her 2nd helmet. She was in her first one just under 3 months...and has been in her current one for almost 8 months. The plan was for Alice to stay in her helmet until around 18 months of age. So with her being 16 months old now...we wondered how this would play out...whether she would need a 3rd helmet or not. See, when you first get a new helmet, they are somewhat large and need lots of adjusting to make them fit right...so in my opinion, you don't get alot of change in the beginning of each helmet...you notice the most improvement when they are snug, like Alice's is now...which is why Hanger was reluctant to order that 3rd helmet. Being as that we already owe Hanger right much money for the helmet she is in now, Dr Magge thought it would be silly to get a new costly helmet when she would only be in in for a month maybe. So....
Dr Magge said she will stay in this helmet until she outgrows it!!!! Which could possibly be earlier than 18 months...although we really want her to make it to 18 months to get as much improvement as possible before the end of helmet therapy.


Playing after a long car ride home



Dr Magge did tell us in the beginning that because Alice was on the older side when having the endoscopic surgery, that her results may not be as good as a younger baby. But we were willing to risk that...because we wanted this surgery for her. But Dr Magge seemed VERY pleased at how Alice looks and her results so far! We then starting discussing some pros and cons to both types treatment for Craniosynostosis (CVR and endoscopic) I told him my view point about how I see what endoscopic surgery does...and how I feel it stops Craniosynostosis in it's tracks...and stops any physical distortions. When the strip craniectomy is performed and that suture is released...the skull starts to grow as it should be. The nasal and mouth deviation that Alice had before the surgery, was noticeably improved within a short time. For Coronal babies...if you wait months for the larger CVR surgery, that is just more time for things to distort and worsen. Dr Magge did say that during CVR surgery he can correct the flatness that occurs on the forehead in Coronal babies but the nose deviation is something that cannot be corrected. Well... I am just fine with that!. Alice's forehead may be a little flat on one side for a little while but I am ok with that! If we avoided putting our sweet baby through a large reconstructive surgery of her skull, an ear to ear incision etc...and all she has is a flattened spot...so what?!? Although Endo babies continue to improve after helmet therapy and their brow is pushed out by sinuses. When her helmet is off, you can't even tell what she has been through. I couldn't be happier with our decision to FIGHT for this endoscopic surgery! So grateful for Dr Magge coming into out lives at the perfect time and so blessed to have our beautiful little Alice...she is my hero!

I also want to take time to thank a sweet friend of mine who recently hosted a fundraiser for Alice on Instagram to help us pay for her helmets. I can't thank you enough for your hard work and your sweet heart! (@auctionforAIC)

Below is a new awareness video I have been working VERY hard on to help other families and also awareness of Craniosynostosis and shed light on the endoscopic surgery option. It would mean the world to me if you would share this video with others...especially new mothers/fathers.