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, 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.