Wednesday, July 30, 2014

Life after the helmet

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

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

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

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

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

18 months old

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

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

We followup with Dr Magge at the beginning of September.

Thursday, July 17, 2014

So long farewell...

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

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

Add caption

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

The little hat they put on Alice when they scan her

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

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

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

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

Celebration video :-)

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.  

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 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

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.