Have a new surgery date

[InfinityRogue]

So they called us yesterday to set up a new date for surgery after it was cancelled. They could fit us in on May 24th. I'm so angry. I couldn't even post about it yesterday. It's a month later! I feel like I have to start all over with the emotional preparation.

And on top of that, I'm worried about my daughter having pressure because she keeps tugging at her ears and hair. I've voiced my concern about this but they keep telling me that kids with sagittal cranio, they're not so concerned with pressure since her other sutures aren't closed. I just keep thinking about the other kids that had surgery where their heads popped open into the new position after they cut them open and they were surprised to find that much pressure. I'm so scared that she might have that too. They've referred me to a ear/nose/throat doctor now because I've seen my pediatrician several times, thinking it was an ear infection.

Hopefully this ear tugging thing will be solved. I guess I can just cross my fingers and hope that the surgery will happen this time.

[Mel-Nic]

Good luck, Claire. It's so hard to wait. I hope all the tests for your daughter come back well. On the bright side, we're so lucky there's treatment and a cure for craniosynostosis. Soon this will be but a distant memory. Hang in there. Our April 22 surgery date was cancled and we're still waiting on a rescheduled date - feels like we're living in limbo. Big hugs!!

[jjmc123]

I feel so bad all of this is happening to you. The waiting really stinks

[InfinityRogue]

Good luck, Claire. It's so hard to wait. I hope all the tests for your daughter come back well. On the bright side, we're so lucky there's treatment and a cure for craniosynostosis. Soon this will be but a distant memory. Hang in there. Our April 22 surgery date was cancled and we're still waiting on a rescheduled date - feels like we're living in limbo. Big hugs!!

Ughn, I'm so sorry. I know how upset I am about mine being cancelled but I can't imagine how upset I would have been if they didn't give me a new date. Is there any way you can press for it? Even if it's not around the corner, just knowing at least gives you some peace and something to count down to.

[Nezzy]

Ear tugging is common at her age. Does she mostly do it when she is tired or upset? If so, it is common.

[torichan]

Yay for the new date, but sorry you have to wait again. Cranio is always about waiting. ARgh!

[InfinityRogue]

She does it mostly when she's feeding or sleeping. Like, sometimes she'll fall asleep while tugging on her ear or hair, or she'll do it in her sleep. She's still breastfed, so she'll do it during feeding as well. I thought at first it was teething or ear infection. Of course, waiting for her surgery is not helping because I'm new at this and obviously have no clue what to look for. I guess as a parent my first thoughts go to the worse possible scenario, in other words, pressure when it could easily be something as simple as teething or ear problem, hehe. But we now have an appointment with an Ear/Nose/Throat doctor on May 12th just to be sure. I don't want some ear infection keeping her from having her surgery.

[torichan]

My daughter pulled at the hair on the side of her head, not her ear that much, and she did have pressure on the brain. I too was told that it wasn't pressure and babies just do that, well, that is not always the case. It's good that you are having her checked out, and surgery is a month away and as long as she is meeting her milestones and not having seizures she will be ok. I found that a dose of Tylenol before bed really helped.

[AJ's Mommy]

AJ did that alot too. Glad you got another date!! I will be praying for you!!

[Amanda3796]

Thinking of you as the date gets closer....not too much longer!

:pray

[Camsmum]

yes, we got a new date from original one too, and it was just devastating - so sorry you have to go thru this Claire. We did feel like we were gifted a little bit of extra time pre surgery (after lots of resisting and soul searching) - and did enjoy some down time (as we had a very clear diary). It DOES come around, as hard as it is to believe right now.