Thank you for visiting. Braydon was diagnosed with Craniosynostosis at his 2 month check-up. I hope that reading his story, it will help out another family going through a similar situation. Also Ethan was diagnosed with Craniosynostosis at 1 week old.

Saturday, December 18, 2010

I Get So Emotional

So as the holidays are quickly approaching, I thought I would reflect on all the feelings I have had lately.  Let me first say that this will be more of venting session than normal, but I've had so many emotions since we found out Braydon's surgery date. 

While I was relieved that we got a date and he'll be fixed soon, I'm still disappointed that we couldn't get it done this year.  My mommy gut is telling me that he has headaches and that sometimes there is nothing that we can do to console him.  While he does have ICP, we don't believe that he has had any developmental delays.  He has been rolling over, talking baby talk, and just laughs and laughs when you tickle him.  Plus we also believe that he may have an inclination to start to crawl soon.  If he doesn't roll over the minute you put him on his stomach, he sticks his lil bootie up in the air and scoots around on the blanket.

Braydon's "friend" that I mentioned about in a previous post got her surgery date.  While I'm so relieved that she will be getting her surgery, I'm also disappointed because the doctor's scheduled a special surgery.  I mean no ill will to their family and I understand why they need to get it done as soon as possible.  I only wish we were given the same consideration.  Their family pediatrician stepped up on their behalf and demanded that the surgery be preformed as soon as possible.  While I love our pediatrician, I can only wonder what would have happened if he demanded that we be seen sooner than later.  Would Braydon have already had his surgery, or would we still be waiting.

Then again, I think maybe it's meant to be that he has his surgery in January.  He will be about 6 months old and I guess that is the optimal time to fix his condition.  While it sucks to have to meet his out of pocket expenses again, we won't have to shell out a dime for the rest of the year for anything that he may need.  So maybe it's God's plan all along.  I know I shouldn't question his will, but it's heartbreaking to see Braydon cry.  Even if it's just a whimper.  So I spoil him and I pick him up as soon as he starts to cry.  But it's so hard to sit by and watch him cry when you don't know why he's crying.  Is his head hurting, or is he just looking for attention.

So here I sit on this roller coaster of emotions and sometimes I feel like Terry and I are on this island of isolation,  feeling so lost and helpless as our little boy suffers.  But then he stops crying and laughs and smiles and all my cares melt away.  Or a friend sends an awesome care package and Christmas presents for Braydon with a letter saying I can lean on her shoulder any day because she's been there.  And then I don't feel so alone.

I will be using this blog to update everyone on how his pre-op testing and updates during surgery and post-op. 

There are so many good people out there and thank you all from the bottom of my heart.  So I wish you nothing but the happiest of holidays and safe and happy new year.  May all your dreams and wishes come true and that you get to spend it with the ones you love and cherish most.

Happy Holidays from Terry, Erin, Braydon and Dakota


  1. Braydon is soooooo freakin' cute! What a little ham! I am moved by your post. I am sooo sorry you are having to go through all of this! You are tough parents. I believe with everything that he is going to be just fine! Just stay strong, cry when you need to cry, and lean on friends when you need to lean. Keep us posted and let us know if you need anything!

  2. Erin I cannot imagine what you and Terry are going through. While it may feel like you are alone, trust me, you aren't. We love you guys and that little boy and I personally think about you guys daily. Just think, this time next month, the surgery will be done and he will be on his way to recovery. He deserves to be pain free! Love you guys.

    PS You have every right to vent, cry, be upset, etc. Get it out, don't hold it in.