Really Frustrated!

[Jen]

So in the beginning when we talked to our doctor and consultant and we asked how long the helmet had to stay on, we were told it just depends on the progress. They said it could be anywhere from 3 months til the first birthday. At the hospital the neurosurgeon came out when he was done with his part of the surgery and told us Alex was doing great, he would wear a helmet for 3 months after and be good. When we went and saw the plastic surgeon 2 months later he said very matter of factly that it would come off first birthday(May 7). We just went and saw him again this past Tuesday and now he says to let him outgrow this helmet, maybe it will be off by June. I have been looking forward to his first birthday, counting down the days, hoping for it to come soon, and now he tells us even later. This is so depressing for me and I've lost all hope. So many people say its no big deal its just a helmet, but I have wanted it off since the first day we put it on! I am still determined for it to somehow come off by his first birthday, but I don't know how I can make that happen. I probably can't. Does anyone have any suggestions, similar experiences, anything. Thanks, I just need some hope.
~Jen

[earthworm_kylie]

Sorry to hear your having a hard time with it all, I think all you can do is struggle through *hugs*

[G2sMama]

I'm sorry you have been told so many different things. I really think that makes it all that much worse. I know it's hard, especially when all you want is to see your little one's head without that plastic contraption... but in the whole scheme of things, exchanging a month or so more of helmet time for a better result from the surgery, it will be worth it. I promise. :hugg

[jjmc123]

I know it's hard, especially when all you want is to see your little one's head without that plastic contraption... but in the whole scheme of things, exchanging a month or so more of helmet time for a better result from the surgery, it will be worth it. I promise. :hugg

:yeahthat

[JillysMama]

I totally feel for you. We had the same thing happen with my daughter. We were told her helmet would come off by her first birthday and were so excited. We met with the neurosurgeon on her first birthday ready with bows for her pretty hair. Instead he said that she hadn't really grown enough and he wanted her head circumference to be bigger before we call it quits. Her helmet still fit her really well so he told us to just let her outgrow it. I cried the whole way home. :react

After much discussion my husband and I decided that a few more months is not the end of the world. After everything she went through with surgery, the worst possible thing that could happen is that her head relapse after helmet therapy so much that it was all for nothing. We kept the helmet on until 15 months and then (even though she really hadn't outgrown it) our neurosurgeon said we could take it off.

One thing that helped me get through those 3 extra months was when I basically stopped looking at the clock. I stopped counting down the days till we could take it off and I just tried to stop thinking about the stupid thing all together. I had been driving my self nuts fantasizing about rubbing her furry little noggin.

Then I sat back and tried to think of all the reasons that I hated the helmet. After 9 whole months of her wearing it we had adapted to all the maintenance and hassle surrounding it. Daily baths, special shampoo, dressing her appropriately for the temperature, scrubbing it, all the comments strangers made... After 9 months none of those things really affected us anymore. We had just gotten used to it.

After realizing that we had adapted and deciding to just stop the countdown, I didn't stress about it as much. Did I desperately still want to put bows in her hair? Of course! She had the most beautiful long blonde hair. But if I had taken the helmet off too soon and she had a relapse I would've blamed myself for not listening to the expert - the neurosurgeon.

Anyway, a couple of things I do remember doing in those extra months that I hadn't let myself do before is I used to take off her helmet more during the day. The three extra months were from July - September so it was insanely hot out. We went to the beach for a whole week and I really only put on her helmet at bedtime. There really isn't a way to speed up the process since your doc is really just waiting for your little one to grow.

Good luck and hang in there! You'll be there before you know it and it will all seem like a distant memory.

Jean

[Sophia's_mom]

What a huge let down! :sigh I'm so sorry they gave you so many different dates and keep pushing for you to leave the helmet on longer.

I know I was so ready to have it off by Sophie's first birthday. Her surgeon told us the same thing at her 12 month check up, if the helmet still fit we should leave it on, but her's did not fit, we would have had to get a third one to go any longer, so he agreed her head shape was good enough and we took it off.

I can't put it any better than Jean did. The worse thing would be if his head shape reverted back and another surgery would be needed. I would endure lots more helmet time if that were the case.

The research for helmet therapy is changing so quickly with more and more families having this surgery, and the leaders in the field are now recommending keeping the helmets on until 18 months, maybe that is part of your teams decision.

I know it's hard to handle, no matter the reason. We are all here for you, vent when you need to. :hugg

[Jen]

Thanks everyone for your responses. Jean, yours made me cry!:) (and laugh remembering the very old man at Wegmans today say to me "I like his hat, it's cute!) The doctor has told us many times that when they reach their first birthday, that is when they no longer worry about relapse. So of course I'm thinking ok then hes good when he reaches his first birthday. I know it's best for Alex, but yeah it makes it so much harder when they keep changing it. We will get through though!

~Jen