Where did we go?

The answer to this question is I moved Kaiya's blog to a facebook page for the ease of updating during her surgery.   To any one following us here her facebook page is 

https://www.facebook.com/KaiyasCranioJourney

I will be updating the blog with pictures and the surgery story so that when other mothers come along in the future the whole story will be all in one place.     

Anyway here is Kai 4 months post op looking fabulous.....

Surgery in 25 days oh my!!

This week has been a whirlwind of activity.   Kaiya's surgery is scheduled for May 6th.  Her preop appointments are going to be on May 3rd.    I have so much to do to get ready for her surgery.    Kaiya requires 3 procrit shots before her surgery the first one to be given at 21 days before surgery.    I have the appointment set up for it.  I have the time I am going for preappointment bloodwork but the pedi's office has dropped the ball on the pre auth we need from the insurance company to get the medicine.  Their office has closed for the day they work 1/2 day on Thrusday and even if pharmacy gets preauth on Friday it will be Monday before the meds arrive.   Maybe I can move her appt to Monday evening but in any case this is frustrating.   Yes, I made other calls.  I called the insurance company to ask the status of the pre auth and the lady who I got after waiting for 10 minutes on hold sounded like she was talking with a bag of nails in her mouth and I couldnt understand what she said.  So I got off the phone frustrated not knowing anything else.  So I called the PS office and they said we could start it Tuesday if need be and then next week just give it on Monday.   Do I feel good about this?  No.  Do I have a warm fuzzy about this?  No.  The peditricians office dropped the ball and didnt follow up before they left for the day.  I bet you 100 bucks if it was her kid she would have followed up.  This medicine could make a big difference in Kaiya's surgery outcome.   I am pissed and she will hear about it tomorrow.   --ok maybe not as you get more flies with honey but if this shit isnt figured out tomorrow we are changing peditricians.  
So once we get this procrit thing straightned out, hopefully tomorrow I will call the surgeons office and verify we got the pre auth for the surgery and hospital stay and begin to see what else I need to do to get the neurosurgeon covered.   Holy hell this is a full time friggin job.   Hopefully my FMLA paperwork will be at the house when I get home tonight or I can add tracking it down to my list for tomorrow as I am sure its going to be a task and a half getting it filled out correctly and turned in.  
This weekend Kaiya will have her blood draw and mommy will drink vodka to keep herself calm.  ha ha.   Then on Monday we can start making our travel arrangements.   I think we will try the Residence Inn.   I have been told they have a hospital discount for a suite and they serve breakfast.  Having breakfast provided will cut down on some expenses of the trip.   Travel arrangements are the part I like best.  I love to travel too bad this isnt going to be a fun trip but we will have the weekend after preop to do some fun things with little Ms Kaiya.   
After travel arrangements are made I get to make sure every thing at home is in order for my mom to stay with Camryn and DJ.  Camryn has never had both mommy and daddy gone for more than 4 days before.   I know she will be fine but we are going to make sure we have a way to video chat with her while we are gone atleast.   My mom is excited and the kids are excited.   I have to get the medical poa to my mom for while we are gone and lemme think what else she will need.   I have to make sure to leave checks for the babysitter and all kinds of other stuff.   Then once we get back my mother in law is going to stay with Kaiya after I have to go back to work for a few extra days.   It feels good to have family involved and helping us with the kids.    Every one has been giving us so much love and support and now the hardest part is yet to come but I keep telling myself that a month from now I will be sleeping in my own bed and when I look to the crib beside me my little girl will be on the other side.   She will be fixed.   She will be home where she belongs.  
Well thats all for now.   SO many thoughts in my head.   This helps.....

Theres my sweet Kaiya in her Easter dress the same dress Camryn wore her very first Easter.  Below is Cammie in the dress..

Lumps and Bumps Oh my

Well another week has passed.  I called Dr Fearon's office last week and we decided to move Kaiya's surgery from June to May.  I cant take the waiting anymore. It seems with each passing day her headshape gets worse and worse.  I know the time from 6 - 10 months is a big time for head growth but wow poor kiddo her head gets more mishappen by the day.  So we should know the date for surgery either this week or next.
But lets forget about that for a moment.  Let's talk about this amazing wonderful baby.   Kaiya is sitting.   Yes, she is 9 months old but she is only 7 adjusted.   She is starting to use other sounds than ahhhh when she is talking.  She rolls everywhere she wants to go.  She is all over the place.  She is starting to experience seperation anxiety and it's so funny.  Well funny to me not to her.  She is a fiend for her pureed foods and loves those gerber crunchies.  This weekend she tried a raspberry and that didnt go over very well.   She did great with the bites of muffin and pizza crust but she must not have liked the raspberry.   She is teething in a weird way.  She is working on bottom teeth 3 and 4 and still doesnt have any top teeth.   Hmm thats weird.   3 kids and she is the first to teeth like this.   She loves her bath time and in general she is just the happiest little thing I have ever seen.  She was laughing so hard during family time yesterday it was so cute...  I figure she is reaching her milestones just a little behind her adjusted age but I think its just cause she doesnt have the strength in that little body yet.  We keep working with her and she will be fine.  They say with preemies they usually catch up by 2.  Growth wise she was on charts at 2 months and now at 60 % tile or above but milestone wise is a little slower for her.   

Alas her poor little head.  Her forehead is getting more and more lumpy.   when you look at pictures you can see that the left side is getting bigger and bigger to accomodate her growing brain since the right side of her skull is fused and the brain cant grow how it should.   A friend shared with me last week the procrit info and some other info from Dr Fearons office and I am so grateful for that.   I know they will send it to us soon but having it now made me feel not so in the dark.  So Liz if you are reading this you are my hero.  And thanks so much for sending me the video and pictures.  Those kind of things mean so much.   Anyway.   This blog allows me to get out my feelings and thoughts.   And maybe just maybe we help another cranio mom in the process.  
Here is a  pic of my princess sitting up..

Fundraising ideas and thoughts

Well.  I am stressing.  I am stressing the costs of the travel to Texas and the fact that my time off from work will be unpaid!   So I want to do a fundraiser.   I am thinking of asking friends and family to donate items so that I can have a huge yardsale.   I am also thinking of creating a fundraising website so that people who may want to help out can do so!  I am not sure if that is a good idea or not!   I dont know what else to do.   Airfare is going to be like 1400 bucks for Ray, Kaiya and I to fly down.  Hotel another 300 - 400 and food for Ray and I while we are there plus the costs of a rental car.   Then we have to support the household here while we are gone and I wont be getting paid for my time off from work since I am out of leave and will have to use FMLA for Kaiya's surgery and recovery time.   So what does everyone think about my fundraising ideas????  Do you think a donation site is a good idea?

I like this pic of Cam and Kai.  It shows Cam's onerey side and what a great big sister she is and it shows how big Kai is getting.  One thing I dont like about this picture is that it shows how progressive Cranio is.   Kaiya's head is starting to look worse.  (I knew it would) but now its becoming more obivous.   I think that people are looking at her funny when we go places.   I know thats a horrible thing to think and I shouldnt care but ughh....   She is still my sweet beautiful baby.   And she and Cam look so much alike.   I want June to get here but I wish I had the travel part figured out.  



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.