One week from today..

September 8, 2010

Tara will be in surgery. We spent the summer doing MRI and CT. Her Neurosurgeon

and Neurologist both viewed the films. Than they both had opposite vacations.

Once they finally spoke about a week ago, I got a call 10minutes later that her

surgery is very necessary now. The surgeon had told us in early August that it

needed to be done, but it could wait. I didnt want to do it during school, but

its better to have her miss a week of school than to have let him do surgery in

August than disappear on vacation! I want him around every minute she's in

Recovery and after we get home.

Her surgery is for Chiari Malformation I. Its the mildest type but it has also

begun to interfere in her life. Last Spring, she began to have pain in her neck

after laughing--to the point I would see the wincing on her face. What kid wants

to go thru life knowing its going to hurt to laugh?

The surgeons office told me to expect a 2-3 day stay. Other Chiari parents have

said that sometimes it goes to 4 days, and often up to 6 days in the hospital.

I've been advised to bring a computer and phone to be able to keep in touch and

combat the boredom. I've also been told the first 24-48 hours are going to be

the worst hours of my life, just trying to get her thru the level of pain

management. I've also been told that although the first few days are the worst

she'll have to get thru, after a few months most were glad they went thru with

the surgery.

We'll be in a major hospital in NYC so when she's sleeping and during surgery,

there will be plenty to keep me busy. I just bought a new notebook(computer) to

keep me busy, I've been told thers a lot of quiet time sitting next to her bed.

Please keep us in your thoughts in the next week. I'm starting to get nervous.

The tough part will be sending her thru those doors when they take her away from

me, it always is.

Maureen

What are Chiari malformations?

Chiari malformations (CMs) are structural defects in the cerebellum, the part of

the brain that controls balance. Normally the cerebellum and parts of the brain

stem sit in an indented space at the lower rear of the skull, above the foramen

magnum (a funnel-like opening to the spinal canal). When part of the cerebellum

is located below the foramen magnum, it is called a Chiari malformation.

CMs may develop when the bony space is smaller than normal, causing the

cerebellum and brain stem to be pushed downward into the foramen magnum and into

the upper spinal canal. The resulting pressure on the cerebellum and brain stem

may affect functions controlled by these areas and block the flow of

cerebrospinal fluid (CSF) — the clear liquid that surrounds and cushions the

brain and spinal cord — to and from the brain.

September 9, 2010

Maureen you know that I had the pleasure to meet your beautiful daughter and

can't imagine how sad it is for you as her mom to know that it hurts her to even

laugh -it's so sad for me to hear that. Poor little thing. Thank goodness

there is something to be done to help her, and as hard as this surgery is going

to be on you, I would think knowing that she would be in pain each time she

laughed the rest of her life would be even harder for you as a parent. Thank

goodness you live near some of the top medical institutions in the world, I'm

sure have the best doctors to oversee and perform the surgery. And...the fact

you have support from others who have gone through this already with their

children is SUCH a plus. You are already given a gameplan of what's ahead and

while you may not want to know that the first few days will be the toughest- in

my opinion it's better than not knowing anything and being the first one you

know to go through it....going into the world of the unknown!

I would suggest you take some " me " time in the next few days if you can. Maybe

go for a pedicure, take some bubble baths -try to pamper yourself because I can

imagine that sleep won't be that easy the first few days either. In addition to

the suggestions to deal with the time spent in the hospital -what about books on

tape- or actual books. Sometimes as we all know you just find those books where

you can lose yourself in another world. I'd look for that type of book -one

that will help you to escape long enough for your mind to relax.

I just know and have complete faith that your little trooper is going to be just

fine- in fact she's probably going to deal with it better than you! She's a

tough little girl...and when this is all over I'd say it's time for another trip

to Disney!!!

Hugs to you and your family and especially your beautiful daughter. You know

you have prayers and love your way that all goes perfect and as should to help

make things better for her future!

Best!

=====

September 9, 2010

Maureen I teared up as soon as I read this. Something I would never want to

endure as a parent. I will pray for your daughter and your family's healing and

to give your strength. God be with her and her family. Kate

>

> Maureen you know that I had the pleasure to meet your beautiful daughter and