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 headbutts 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! 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.