Waiting Waiting Waiting -- Added option to follow this blog.

Waiting.  Sucks.  Waiting really sucks.   She is rubbing her right eye!  What does that mean?  She is cranky!  Is her head hurting her?  She doesnt want to take her bottle today!  -- Is this cranio related?  I hate this waiting game.   I am counting down the months till June gets here.   I dread June!   I just want this whole surgery over with.  I just dont know what I should be doing and untill we get a date for her surgery, there isnt much I can do!  I am concerned with the cost!  I am concerned I wont be able to save enough money for the trip to Texas!   I am concerned insurance might deny it.   I know I am gonna have to work to get the neurosurgeon approved.  Every thing I have read from other moms in this position have had to do this. I dont know what I am gonna do with my other children while we go to Texas!    Apparently- the NS our Craniofacial doctor uses isnt on any network.  I worry about not having any leave time from work.   I am currently out of leave and wont accrue much between now and then.  So not only am I waiting for surgery I am waiting to start crossing the T's and dotting the I's.   I hate the unknown!   I guess I need to make a list and a time line.  That will atleast make me feel better.  
All I do know is I am doing the right thing for Kaiya.  Last week I was browsing a cranio website and read stories about uncorrected adults and how not having had surgery as a kid really has impacted their lives.  Every aspect of their lives for some of them.   How horrible would that be?   I know I dont want that for my Kaiya.  I just want to get her fixed and go on with our lives.  But then I read about kids needing more surgeries.   I worry about her eyes?  Are her eyes ok?  Our surgeon recommended waiting till 18 months to get them checked.   I will ask him more about this in an email this week.   I think I just need to step back from it all for another month or so till we get our surgery date and just enjoy my princess.   She is really the sweetest most easy going baby I have ever had the pleasure of knowing.  
Any way I finally figured out how to add the follow option to my blog so now you can all follow us.   And of course I need to add a couple pictures of my baby girl.    She is 8 months old this week.   6 months adjusted. 

And one more image of both girls in their coordinating outfits Camryn picked out while shopping yesterday...

Surgery in June in Dallas

Kaiya's condition requires surgery to fix it.   There isn't enough room in her skull for her rapidly growing brain and the fusion is causing facial asymmetry.  So she will be having a procedure called a Cranial Vault Reconstruction with a front orbital advancement.   --Damn thats a mouthful.   The local doctor told us it would be a 6 day hosptial stay and she would require a blood transfusion.    He couldnt tell me how many of these kids would need another operation or anything else.  He also told us he did 4 of these type of surgerys in the month of January.   This honestly didnt impress me much.   I know because Camryn has a metopic ridge that there is an amazing craniofacial surgeon in Dallas Texas.   In 2010 Camryn's metopic suture closed forming a drastic ridge from her softspot to the bridge of her nose and it caused me much anguish.   So I became well versed in the cranio world.   I know that I didnt want the local team to be the ones to fix Kaiya's skull.  I knew that after having met with Dr Fearon in Dallas that he had the skills to fix my darling Kaiya.   I immediately contacted his team and began the process to get Kaiya's surgery scheduled with them.   
Here is my list of reasons why we are choosing him...

-Shorter hospital stay 48 hrs vs 4 -5 days  kids can fly again right after surgery

- doctor uses cell saver technology so less likely to need blood transfusion

- doctor doesnt use dissolvable plates or screws uses dissolvable stitches instead to fix deformity

- doctor follows patients into the teen years

- doctor specializes in craniosyostosis only

- uses dissolvable stitches vs staples (less painful for baby)

- doesnt leave holes in the child's skull

- does the surgery more frequently than the local team local team only does 2 -4 a month

- I know atleast 6 other mothers who have used them and raved about how wonderful he is. 

- our insurance will cover him and the hospital down there

- always has the same OR team.  They are all well versed in cranio surgeries.  

My list goes on and on but in all honesty I want whats best for my Kaiya.   And I know that for us Dr Fearon is the right choice.  

 

So after several contacts with Dr Fearon's office, a phone call with Dr Fearon and getting all her paper work filled out now we await a surgery date.  

 

Here is a link to Dr Fearon's website for more info..

http://thecraniofacialcenter.org/index.html

 

 

What is Craniosynostosis????

On January 28th 2013 we got the word from local doctors who used an xray to confirm that Kaiya does in fact have right unilateral craniosynostosis.   The local doctor said she presented with all the classic symptoms.  Her right eye appears more open than her left.  The right side of her forehead appears recessed compared to the left and she has a ridge going down the right side of her head.   So now you ask me what is Craniosynostosis????

 

 

 

 

craniosynostosis

Definition

cran·i·o·syn·os·to·sis

[ kràynee ō si nos tṓssiss ]

NOUN 

1. 

premature fusion of the skull sutures: a condition in which the irregular joints between the cranial bony plates fuse together, usually before birth

 

 

Now here is the description of Kaiya's type of Craniosynostosis from her surgeon Dr. Fearon's Website. 

"Plagiocephaly” is the term used to describe the shape that results from craniosynostosis of either the right, or left, sides of the coronal suture. The coronal suture runs across the top of the skull extending almost from ear to ear. The soft spot, or fontanel, is located midway between the right and left coronal sutures at the top of the skull and is usually closed in children with plagiocephaly. On the side of the skull, where the suture has closed, one can often feel a raised ridge of bone. When viewed from above, the forehead on the fused side is further back than the opposite side, which typically has slightly overgrown further forward in order to compensate for the brain’s inability to grow on the side that has fused. In looking directly at the child, the eyebrow is higher on the fused side, which makes the eye seem more open. Often, it is many parents’ first impressions that it is the eye on the normal side that seems abnormally closed, when actually it is the other eye that is abnormally more open-appearing. Some may notice that their child’s nose is slightly off-center, angled or pointed towards the side of the fused suture. It is common for parents to say that their child looks worse in a mirror, which may be related to the fact that a mirror flips the image around so the right side becomes the left, etc. Instead of seeing your child as you are used to seeing him, or her, with the flatness on one side, you now see a different child with flatness on the opposite side.

The incidence of plagiocephaly is estimated to be about 1 in 3500 births. Almost all children affected with plagiocephaly require surgical treatment. Rarely, children with one coronal suture fused shut can have a gene mutation (up to 20%), which may signify a condition called Muenke syndrome.

Kaiya's Story

Baby Kaiya was due August 20th. She was born on June 23rd. On the 20th of June I was hit making a left hand turn (in my van) and this crash put me into labor. They tried for 3 days to stop it and on the 23rd I sat up in bed and my water broke. Kaiya was born at 3:14 pm at 31 weeks weighing an amazing 4lbs 5 oz. She is a little fighter and only spent 22 days in the NICU. But from birth her left eye didnt open as quickly as her right eye. She didnt have a ridge on her head at that point just the eye thing. I never thouht anything of it. Just a preemie thing. Well our blessing came home on July 15th. She is the most wonderful sweet happy baby I have ever seen. I love her so very much... By August I saw the ridge over the right coronal and with the eye issue I started worrying. I thought oh no. I cant spend months obsessing over this baby's head. So at her 2 month well child I brought it up with her pedi and it said the typical positional it will go away. It will go away. At 4 months he said .. I do see what you are talking about with her eye let me look into it. He noted that she had a great over all headshape. Even to say she had one of the roundest heads in his practice. At that time her overall shape was awesome. That ridge was still present but overall shape is great. At her last synagis shot he just looked at her with a look on his face. (He didnt give her the shot just saw her in passing). We have used this pedi for 11 years I know that was a look of concern. In the mean time I emailed Dr Fearon in Dallas Texas a set of pictures and he confirmed what I believed to be true. His words were -----------------------------------------------------------
I looked at the pictures that you sent me of Kaiya and I think I do see what you are worried about. In some of the pictures it looks like your daughter might have a right sided plagiocephaly from coronal synostosis.
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Insert lots and lots of tears here. This is what started Kaiya's Cranio Journey...