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.


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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 :-)