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.

Saturday, November 13, 2010

And the Waiting Game Continues

I know it's been awhile, but Braydon man has kept us very busy.  I thought I would post the questions that we asked Dr. Puccioni and follow up on how our appointment with Dr. Miller went.

Q&A with Dr. Puccioni

1.  Do you believe Braydon has Craniosynostosis and if so, is it just his Sagittal Suture that has fused together?
Yes and based on the X-Rays it is just the one suture.

2.  Would you consider it mild, moderate or severe?
Severe, due to the amount of pressure being place on his head.

3.  Do you recommend surgery to correct the synostosis?

4.  Which surgery method do you prefer?
Posterior Cranio Vault Remodel

5.  Which surgery method will you be using on Braydon?
It's your choice but I recommend the PCVR.

6.  Can you describe how the surgery will work?
We will make an incision that runs from ear to ear.  The skull will be removed and broken in to two pieces.  This will break the fusion.  Dr. Miller will then reshape the skull and put it back together to allow for maximum growth.

7.  When do you recommend doing the surgery on Braydon?
5-6 months old - but willing to do it this year

8.  What are the risks/complications with the surgery?
Bleeding out and wound infection

9.  What are the risks if we opt out of the surgery?
Cognitive Development, Brain Damage

10.  Are there any other forms of treatment besides surgery?

11.  How many cranio surgeries have you performed?

12.  How many sagittal cases?

13.  What are the chances of multiple surgeries?

14.  Will Braydon have to wear a helmet after surgery?

15.  Do you believe Braydon's case is some way related to Genetics?
Not Hereditary

16.  Do you use Procrit injections to reduce the risk of need for a blood transfusion?
I use to use it all the time until the FDA black boxed it.  So I don't use it anymore.  Give Braydon plenty of iron supplements prior to the surgery and keep plumping him up.  That should reduce the risk.

17.  Do you believe Braydon will need a blood transfusion during surgery?
50% chance

18.  Can we donate prior to his surgery?
Yes, but don't recommend due to possible complications.

19.  Will you have to shave his head?
It's up to the plastic surgeon. (Plastic surgeon said yes)

20.  What type of stitching will you use?  Also will plates or screws need to be placed in his head?  What kind will you use?
Dis solvable stitches will be used along with absorb able plates and screws.

21.  Will Braydon's head be bandaged up post-up?
Yes, for a couple of days.  Also a drainage tube will be put on his head for a couple of days.

22.  How long after post-op will be he incoherent?
1 hour or 2

23.  Will I still be able to breast-feed Braydon before and after surgery?
Yes, but he probably won't eat a lot after surgery.  Recommended pumping and using bottles for a couple of days.

24.  What's the recovery time after the surgery?
3-5 days in the hospital and 6-9 months at home

25.  How much time should I take off work?
3-4 weeks

26.  Where do we go from here?
Go downstairs and get a CT scan, set up an appointment with Dr. Miller, wait for insurance approval, and then schedule surgery.

So this is where we sit.  We had an appointment with Dr. Miller on Monday, the 8th.  He pretty much told us the same thing that Dr. Puccioni said about the surgery.  However he wasn't very optimistic about getting the surgery done before the end of the year.  He thought insurance approval would take about a month and they won't schedule the surgery until they get prior approval.

So I've been calling the insurance company every day seeing if they've received documentation asking for pre-approval.  And Terry finally called Dr. Miller's office on Thursday.  They were waiting for one more CPT code to submit and then would fax it in.  I think I will call again on Monday.

It breaks my heart that I believe Braydon is getting headaches from the pressure on his head.  While he can't physically tell us that his head hurts, his demeanor hints that's the case.  He will still be really fussy after being fed and changed.  He will finally calm down about a half hour Tylenol is administered.

However the pressure on his brain has yet to stunt his developmental growth.  He babbles all the time and will laugh and smile at us.  He can hold his head up when we're holding him or "sitting" him on the table.  He can also sit up on the couch by himself as long as he has some sort of support.  We still haven't rolled over, but we are definitely starting to try.  Plus he wants to stand all the time.

We can't wait for this part of the journey to be over.  The stress of having a "sick" child has definitely taken the toll on us.  We appreciate all the support and prayers our family and friends have given us.  It has helped immensely.  Please keep on praying that the insurance approval comes through quickly and that we can get the surgery done prior to the end of the year.  Even if it means spending Christmas in the hospital.     

Braydon says keep on smiling.                           

Thursday, October 28, 2010

Our heads are spinning!

We finally met with the Neurosurgeon today and was able to get a course of treatment.  Dr. Puccioni provided us with 2 options.

1.  Do the surgery using an endoscopic method or
2.  Do the surgery using the Posterior Cranio Vault Remodel method

Some may advertise the endoscopic method as less invasive, but according to the doctor it's not really the case.  He typically only does the endoscopic method on children 6 weeks old and younger and recommended the CVR method.

So that's what we chose.  What will happen is that they will make an incision from ear to ear and pull back the scalp.  They will then remove the skull and piece it together so that Braydon's brain can actually grow and his head will have a more round shape instead of the long and narrow shape it currently is.

Dr. Puccioni will work with Dr. Miller.  We meet Dr. Miller on Monday, November 8th and from there we will schedule the surgery.  Forgoing the surgery is not an option as Dr. Puccioni believes that there is a high amount of pressure on his head due to the fusion of the skull.  While we finally have a course of treatment, it's still going to be a long journey.  It looks like his surgery will be this year but after Thanksgiving.

Thank you to all of you for your love, support and prayers.  They haven't gone unnoticed and are greatly appreciated.

And Braydon says keep on smiling.

Friday, October 22, 2010

The Sagittal Head

Braydon's appointment is fastly approaching.  Thursday can't get here soon enough.  I keep asking myself to write a list of questions to ask the doctor, but get easily distracted.  Maybe I just don't want to think about it.  Because Braydon has so much hair, it's really hard to see the shape of his head.  So tonight during bath, I took some pictures.  They're listed below.  Oh and BTW I want to wish my little boy a happy 3-month birthday.  I'll post pictures from his 3-Month photo shoot once I get them loaded to the computer.

Friday, October 15, 2010

Time Flies When Having Fun

I can't believe that 12 weeks ago, I was sitting in a hospital bed waiting to give birth to our baby boy.  So with that said, we would like to wish Braydon a very happy 12 week birthday!

Wednesday, October 13, 2010

Wonderful Support Line

Terry and I just wanted to thank everyone for their support.  We know that we are at the beginning of our journey, but are very grateful for all the love and support our family and friends have shown us.  After talking to quite a few people who know Dr. Puccionni, Terry and I feel very comfortable with who Dr. Davey has referred us to.  Now we just can't wait to meet him.  I probably won't have any updates until we meet with the Neurosurgeon, but wanted to thank everyone for their kind words and thoughts and prayers.

Until next time...Braydon says keep on smiling.

Monday, October 11, 2010

One of the WORST days of my life

It was September 23rd and I woke up all excited that Braydon was going to have his 2 month check up that afternoon.  Granted I was dreading having to watch him get his shots, but that was what Daddy was for.  I was really excited to see how much he had grown.  See Braydon was born at 37 weeks and 6 days.  He weighed 6 lbs 10 oz at birth and was 19 1/2 inches long.  We could tell that he was putting on the pounds because his thighs kept getting chunkier and chunkier.

When we got to the pediatrician's office, Braydon was seen right away.  The nurse had us strip him down to his diaper (man he doesn't like that) and she weighed him and measured his head and his height.  He topped the scale at 11 lbs 9 oz and grown 3 1/4th inches to get to 22 3/4th inches.  However his head measured 42 1/2 cm. which put him in the 93rd percentile for head size.  At this point in time I just thought he had a big head (like his daddy).

Dr. Davey came in next and started his examination.  Everything was great until he started looking at his head.  He would feel around on the top and get a puzzled look on his face.  And then lift up his head and check the back.  I was starting to get worried, because my worst fears were coming true.  I had always thought his head was oddly shaped, but everyone told me that oh it was because he was in the birth canal to long.  It will balance out.

Dr. Davey then proceeded to go over all the good things that Braydon has done and how he has progressed.  Then the dreaded words came out of his mouth.  He told us that he was concerned with the size of his head and that he thought it was possible that one of his sutures had closed pre-maturely.  He told us that we would need to go to Children's Hospital to get X-Rays taken of his head to determine if that was the case.

The next day we took him in to get X-Rays, unfortunately he didn't like that either.  But we were in and out of there pretty quickly.  I had to wait the whole weekend and all day Monday, but Dr. Davey was kind enough to call us back Monday night.  I should have known that most doctors don't call you at 9:00 at night with good news.

The X-Rays had shown that Braydon's Sagittal Suture had pre-maturely fused together and Dr. Davey diagnosed him with Craniosynostosis.  He referred us to a Neurosurgeon that would take a look at Braydon and his x-rays and kind of explained what we could expect with treating this.  More than likely Braydon will need surgery, however we won't know the course of treatment until we meet with Dr. Puccioni.  Our appointment is scheduled for Oct 28th, however I'm hoping that we can get in sooner.

Until next time...Braydon says keep on smiling.