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.

Thursday, December 30, 2010

Got the Green Light

Braydon's Pre-Op Physical went great.  He got two thumbs up from the pediatrician.  However on another note, he was concerned about his eyes.  He kept asking us if we ever seen him go cross-eyed.  We were both like no, but he told us we should have Dr. Davey check it out at his 6 month check-up.  Also, we will probably have to get Braydon circumcised again.  I guess when it rains it pours.

But any way, our healthy little baby boy now weighs 17 lbs 6 oz with a diaper on and is 25 1/2 inches long.  His head has grown to 46 cms so that's another cm.  It's a good thing this surgery is coming up quick or otherwise I would have to buy him a bigger hat.

Next stop is Children's Hospital on Monday for Braydon's blood draw.

Hope everyone has a safe and most of all Happy New Year.

Wednesday, December 29, 2010

Freaking out!

I called Braydon's neurosurgeon this morning voicing some concerns about the pressure on his head.  Braydon has not been sleeping well and now is banging his head against the mattress.  They thought we would have to go in for a CT scan to prove that the pressure has increased.  I waited all day for the doctor to call me back, but no such luck.  As I'm driving home my phone rings, but I don't hear it.  I see that I have a missed call and a voicemail.  Of course it's the doctor's office.  So I call them right back, instead of them telling me to bring him in for a CT scan they tell me that his surgery has been moved to Tuesday.  I had to ask her to repeat it to me because I was to shocked to realize that in 5 days Braydon will be better.

So now we have a new date and there are so many things that I need to get done before Tuesday.  Braydon has a pre-op physical tomorrow with a pediatrician we've never seen since ours is out until Tuesday.  Then we have to take him to Children's on Monday to get all of his blood work done.

Braydon's surgery is scheduled for 2:30 and we need to be at the hospital at 12:30.  Please keep Braydon in your thoughts and prayers and pray that he doesn't catch the stomach flu that's going around.

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

Friday, December 10, 2010

It's the Final Countdown!

I guess I haven't posted an update for a very long time.  We heard back from Dr. Miller's office and we have a surgery date.  January 13, 2011 will be the day when Braydon gets his life back and we can take our final ride on the cranio roller coaster (at least we hope).

Braydon is 20 weeks old today.  I can't believe that we have had this precious baby boy with us for that long.  It just seems like yesterday that we found out we were pregnant.  And now we are counting down the days until he goes in for a major operation on his head.

Now I know we have had our issues with sleeping at night and a whole lot of fussy periods, but when he laughs and smiles it makes me forget all about the hard times.  I'm also thankful that we have him in our lives, especially after Terry and I found a missing girl wandering in front of our house.  I don't know what I would have done if that would have been Braydon wandering the streets alone.

I am also thankful that through Craniokids.org, we have found another family that has a daughter with the same condition as Braydon.  They are waiting on their surgery date, but I would assume that it has to be close to Braydon's date.  While we appreciate all of your prayers, please pray for them and all of the other families that are dealing with this as well.  It's not the easiest journey, but it gives me comfort knowing that I'm not the only one on this path.

Braydon says keep on smiling.