Re: Front Page Star for February!- warning Long winded ;)

[Guest guest]

Alright Kendra you asked for is so now you are going to get an

earfull..lol *wink*

Firstly, Leigha is not your average DOC baby. She doesn't have nor

has she ever had plagiocephaly.

Leigha was born with a funny shaped head on July 22, 2000 at one in

the morning. Shortly after she was delivered her doctor made a small

comment (sort of matter-of-factly) that Leigha had Downs syndrome

features. Her ears were lowset and her eyes were pulled down at the

corners. Other distinguishable and troubling features were that her

forehead was flat and recessed and her head was elongated and flat in

the back. Before we were dismissed to take our little one home a

peditrian was asked to look her over and she said she definatly

didn't have DOWNS syndrome and her awckword head shape would " Round

out as she grew. " Little did I know that Leigha's head circumfrance

was below 10% and although I was still troubled by the look of

Leigha's head I figured if the ped wasn't concerned then I shouldn't

be either. Leigha had her regular baby checkups, 2 weeks, 1 month, 4

month and one peditrician after another was asked to look at Leigha's

head and all said it wasn't much a concern and that her head would -

round out on its own as she learned to sit up. At her six month

checkup Leigha's soft spot appeared to be closing...it was the size

of maybe a dime and very hard. I knew that the softspot was supposed

to be open until after one years old so was very nervous and scared.

Once again another peditrician was asked to look Leigha over and he

felt her head then remarked, " I don't think its much to worry about,

but we'll just keep our eye on it. " I bawled the whole way home that

night...feeling lost and knowing there should be something more to it

than just waiting and seeing. I got on internet and began long hours

of research and came apon craniosynstosis. Finally I had a term that

I could take to the doctor. I went to Children's Mercy website and

searched under doctors for cranial- facial specialist and found Dr.

Colyer. I called right away and scheduled an appointment...then went

to my daughters doctor to request a referral. The doctor actually

laughed and told me there was nothing wrong with my baby but if

seeing a specialtist was going to make me feel better then she would

give me the refferral. A year ago this Valentine's Day...Dr. Colyer

walked in took one look at Leigha and said that she did have

craniosynostosis and a surgery date and a CT scan was scheduled that

very day. He wanted the ball rolling before her sutures closed any

further and caused problems such as headaches, hydrocephaly,

development delays...the list is endless. We were also seen by the

neurosurgeon who would work with Dr. Colyer on Leigha's surgery. He

walked in spent less than 5 minutes with us and left us very thankful

Dr. Colyer was the main doctor on Leigha's case. In our case CT

scans were issued to make sure that more than just Leigha's coronal

sutures weren't fused.. the CT showed only coronal synostosis and no

hydrocephaly! The first surgery was in March. We went to her preop

checked everything in got the paperwork started and because of her

runny nose were sent home being told that Leigha's surgery for that

next day was off. This group got me through a very tough time and I

have very dear friends here who were up late with me in chat many

nights helping me to just laugh. Surgery was May 01, 2001 everything

was successful...Leigha was banded for postop molding on May 25, 2001

and recieved treatment for four months. This group is a God send and

I don't know where I would have been emotionally if it wasn't here in

my times of need. We've been through casting jitters, stinky head

syndrome, the red spot from Hell, and lots of emotional venting

together *wink*. For everyone here, congrats on finding this board

for some of you it is nothing more than a place to find out bits of

information on plagio, tort, and the DOC band - for others it is a

place where a much needed shoulder can be leaned on. Thank you for

reading this book tee-hee...I think I will cut off the story here

although it could go on and on. Leigha has her own web site check it

out if you wish... http://www.geocities.com/leighasmygirl/Leigha-

CS.html

Hugs and God bless!

Now you get my little Leigha's beautiful face to look at for the next

28 days...

H. - Kansas City, Mo

OH PS - Leigha's PaPa works for the Nebraska Dairy council...we did

this picture for him to set on his desk at work...and check out the

DOC band calendar for 2002, Leigha is in December.

> Happy February everyone! )

> Our Front Page Star for this month is Leigha!!!

> , would you care you jot down your story for those who don't

know it? Thanx!

> Kendra

[Guest guest]

:

Thank you so much for sharing your story. You're family has been

thru so much with little Leigha. You are all incredibally strong.

The group thanks YOU for all your cranio question expertise and we

are so very happy to have you back - just in time for Leigha to be

front page star .

Shew, now I need a nap after reading your story- JUST KIDDING, it

wasn't long at all hehe!!!

Debbie Abby's mom DOCGrad

MI