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Update 5-23-10
Hello everyone... the other day we (on the webstie) were asked to
share our story in order to help one of the mom's with a project she
is doing about Trisomy 13. I realized while writing that there is
so much I haven't shared on the webiste... so here is my response...
hope this is helpful to all who are learning more about children
with T13 as well as those who have been touched with T13...
I think this is a wonderful project you are doing and I am
incredibly sorry for your loss. I love to share our story with
anyone who will listen. I believe it is great for others to be able
to learn about Trisomy 13. I had no idea about the struggles people
with special needs and developmental delays face everyday. These
children and adults are amazing!
My baby girl is almost 18
months old. We were told that she would be with us for two weeks if
we were lucky. We didn't know she had full T13 when she was born.
We chose not to get the test. We had lost two babies before
Eva-Simone due to miscarriage. So we were ecstatic when we finally
had a pregnancy that was healthy. We were considered high risk
pregnancy and Eva was monitored throughout the entire pregnancy. She
always did well although they did see that she was going to be a low
birth weight and that concerned them.
When she was born
they rushed her to the NICU. There they ran tests and eventually
after a week we found out that she had full T13. They told us that
T13 babies didn't live long at all and we should seriously consider
signing a DNR ( Do Not Resuscitate ) form. When I was told I was in
the middle of the NICU room (with no privacy) I was very shocked,
worried, scared... so many thoughts ran through my head...
everything from scared for Eva to scared for my older children and
husband. Eva is our 4th child. When they told my husband this news
we were in a private room and had a bit more time to take in all
this news. I told them that I would not sign a DNR... we would deal
with that decision when and if the time came and no sooner. I
wasn't ready to let her go because that's what the books told
them would happen! I didn't see any forms of stress in Eva's
face... she was the loudest baby in the NICU.. she was NG fed but
eating well and thriving! They kept telling us that these babies
usually fail to thrive... but Eva never showed any signs of failing
to thrive... she actually exceeded all their expectations.
So we chose not to pay attention to what the books say and look at
out beautiful daughter and enjoy every moment we had with her
whether it be 2 weeks or 2 months or 2 years! So that's what we
have done since. She has gone through a lot in her short life but
has continued to show everyone that she is not ready to go anywhere
but home with her family to enjoy life. She is a great joy in our
life and has taught us so much about living everyday to the fullest
... even if we are just at home in our pajamas! ha ha! She is the
happiest baby I have ever met!
She does have complications
like I said... she has apnea, seizures, cortical blindness, she is
deaf, has a cleft pallate, (her cleft lip healed on it's own while
she was in my belly),she is fed through a g-tube (tube that goes
directly to her belly) , she has digestion issues and a weak upper
body. Even though the list of complications seems very long
(because it is) she is so much fun, her smiles just light up our day
in a way that only she can. If we are having a hard day for
whatever reason... we look at Eva and her beautiful smile and things
don't seem so bad anymore. She is an amazing baby girl and such an
inspiration to everyone who meets her. If she can enjoy life
despite all her complications then I can get up everyday and give
her and my family everything I have and even things I didn't know
were in me. She has taught us patience, an unbelievable gratitude
of life, our family, friends and how to just enjoy the everyday
moments we so took for granted before.
I hope this helps
you with your project. Good luck to you. If you have any questions
your welcome to email me I'll be very happy to help in any way I
can. You are also welcome to use pics from Eva's page for your
project. Her webpage address is under my name in this email. Have a
wonderful day!
Daisy Brooks
daisyebrooks@gmail.com
- - - - -
Update 3-28-10
 Hello all, It's been a really long time since I've
had time to sit down and give an update on Eva.
She is doing
well. We enjoyed her first birthday! We spent it in the hospital
(with a viral infection) but nonetheless we celebrated asap when we
got home!
All of the family from Ohio and Ct were able to come
down and see her. It was great once she was feeling well enough to
go home again! Wow! Since then we've moved to Florida (St.
Augustine)!
It is beautiful here... LOVING THE BEACH! Eva
was able to put her feet in some sand for the first time ever! It
was lovely.. I think she loves the breeze the most! Does it get any
better than napping on the beach?! I think it's begining to be her
favorite past time! haha! We are continuing to work on her upper
body strength... she can hold her head up for longer periods of time
now and will take little steps when held up, she BABBLES now! Oh it
is the cutest thing ever! I love listening to her just "talk"...it
is the best sound ever, oh wait she laughs too! It's a toss up over
which sound is better ....they are equally enjoyable!
Eva is
now 16 months old! She continues to do well. We haven't been able
to get set up with new doctors or therapists in this area yet, but
we are definately working on it.
Our older children are
doing wonderfully also. Our oldest Dayzha just turned 10 years old
yesterday! We celebrated at a festival in town! Lots of fun and
such good food! haha! They are enjoying Florida a lot ...meeting
new friends at school and enjoying the weekends at the beach or
festivals. Well honestly we are still unpacking... so I will get
back to that but I just wanted to try to keep everyone a bit more
updated. I will do my best to update Eva's page more often.
Hope everyone is enjoying their spring! (oh...and a quick PS
... we would love to meet some local families in the St. Augustine
area...please email me if you'd like to meet ...
daisyebrooks@gmail.com)
Have a wonderful day!
Daisy Brooks
daisyebrooks@gmail.com
      
- - - -
 Update
11-19-09It's been a while since we've had time to update
Eva-Simone's page...br>
She is now 51 weeks old ... one week shy of 1 year! We are soooo
incredibly blessed! It's been a hard year with a couple of hospital
stays but Eva is now doing well. She continues to eat using her mic
key button (g-tube) and is now starting to gain a bit of weight.
It's been hard for her to gain weight these past couple of months
... she has had 2 pneumonias... but we are now adding polycose to
her formula (elecare) to help her gain weight... so far so good! yay!
We are also working on the possibility of her actually eating some
baby food by mouth! We are taking it one day at a time ... she will
have a barium swallow test done next month to make sure she is not
aspirating before we start feeding her larger amounts. We are also
hoping to get her Baha hearing aid next month! Yay! This is
something we've been working on since she was about 3 months old! So
we are soo excited!
Eva is now playing with TOYS! How exciting is this!!! Her favorite
toys are her links. These keep her entertained for a good amount of
time! She is still teething... she is up to 9 teeth now... working
on number 10! Eva smiles all the time now! Which is such a change
from when she was younger. She seems to love the mall... they have
great light decorations on the ceiling that she loves to look at.
She also smiles her biggest smiles when her 2 sisters and brother
are all around her at the same time! She so enjoys their company and
silliness!
Over the summer we were able to see both sides of our family. Eva
met my family in CT and later in the summer we went to OH for her to
meet daddy's side of the family. She enjoyed every moment with them!
She enjoyed her grandma's bed... king sized bed and Eva managed to
take up the most space! ha ha! She also enjoyed cuddling up with her
great grandma and aunts. We went to Kings Island where she and her
older brother and sisters had lots of FUN!
We were also able to celebrate Halloween all together this year. Eva
was Minnie Mouse, Alani (older sister) was Bell from Beauty and the
Beast, Savon (older brother) was Wolverine from X-men and her oldest
sister Dayzha was an angel. They played games in the mall and got
lots of candy. Dayzha was so sweet... she walked around the mall
with both her and Eva's Halloween bags collecting candy for both of
them! Eva so enjoyed all that chocolate!
Now we are preparing for Thanksgiving! Which this year just happens
to be Eva's 1st BIRTHDAY! It couldn't have been more perfect if we'd
planned it! We have sooo much to be thankful for this year! We have
Eva with us enjoying every day together! We have wonderful children
that are soooo helpful and understanding as well as intelligent
(they are doing wonderfully in school). And we also have our health
... which I try not to take for granted anymore. We are very blessed
everyday! And so sooo sooo thankful!
HAPPY THANKSGIVING to all!
Daisy Brooks
 Update
7-9-09
Eva-Simone is doing well. She's been recovering at her own
pace this past month...but we're excited to say she is doing well.
She is now able to get on the floor and play with her brother and
sisters! She's not rolling around on her tummy any more because I'm
afraid to hurt her new G-tube site. It's still pretty tender. But
all in all she is a happy baby!
Eva is now 32 weeks and 2 days old (7 months)! We recently went to
CT to meet my side of the family. We will venture to OH to meet
Sean's side this summer also. The kids all did well during the long
trip! (We travel late so they sleep through the whole trip!!! yay!)
During our trip to CT she was able to meet a lot of our family...
she was met with warm hugs and kisses! We are very blessed to have
such a wonderful family (on both sides!). There are lots of children
in the family so they kept her and the older kids very busy!
Eva has gotten about 5 teeth in the past month! She is now at a
count of 7 total! She still loves lights. She is using her hands
more ...bringing toys and her favorite rag to her mouth. She loves
to taste anything sweet...although her favorite has to be chocolate!
(that's mama's girl!) She smiles when she sees us! This is a great
thing! For a while we didn't know what made her happy because her
smiles were random..but now we know it's us making her smile! She
also has a bit of an attitude too...ha.ha... she will yell at us
from time to time...ha.ha! She is a blessing and we continue to
enjoy her everyday!
I hope this finds everyone doing well...we wish everyone a happy
summer!
Brooks family
Hi,
Just wanted to update everyone on Eva-Simone. She had surgery on
June 1st. She had a nissen surgery, a g-tube, and they also fixed
her hernia. This will allow her to eat without throwing up (she was
having horrible reflux problems). She was in the ICU for about 5
days. She had a hard time with the anesthesia. When she was able to
breath on her own she was transferred to a "regular" hospital room.
Then we were able to take her home on Sunday! Yay! She has been
doing better everyday. Recovery is at her own rate, but steadily
improving. We couldn't ask for anything more than that! She is
incredibly strong and just an AMAZING baby girl! I can't say it
enough how amazing she is. Eating is getting better for her
everyday. Oh, and she also got two more teeth while we were at the
hospital! (that makes 4 all together now!)
We are giving thanks everyday that she is with us enjoying life.
Dayzha, Savon and Alani have been wonderful big brother and sisters.
They have been giving her time to heal. But really they can't wait
till she is 100% so they can get back on the floor and play with
their baby sister. We've attached some pics for everyone to see. We
can't seem to stop staring at how beautiful she is without a tube in
her nose anymore. It's so funny how you get used to these things.
Her breathing has improved so much since taking the NG tube out of
her nose. Life just gets better everyday. We are blessed. Thanks for
everyone's support.
Daisy & Sean Brooks
- - -
4-28-09
 Hello,
Our baby girl Eva-Simone was born in November of 2008. She is now a
big 5 months old! She has full trisomy 13. She is a beautiful,
strong and amazing baby girl! We've been blessed with 3 older
children as well. Our oldest is 9, her name is Dayzha. Next is our
only boy Savon who is 7. Then is Alani who is 4 years old (and won't
let us forget it! ha,ha!). Eva is well loved and very spoiled by all
of us.
When she was born she stayed in the NICU for a week. It had to be
one of the longest weeks ever! But we were soooooo happy to bring
her home to start enjoying life with the rest of the family. She has
a cleft pallet so she is NG tube fed. We are currently working with
the plastic surgeon to set a date for the surgery. She has seen
almost every doctor possible in the Children's hospital. She amazes
her doctors over and over again! :) We are hoping and praying that
she continues to do just that!
She has a bit of a hard time during her feedings. She gets very
gassy and uncomfortable but we are trying to work with her and find
out what works best for her. She was 5 lbs and 3.4 ounces when she
was born and now she weighs a BIG 12 lbs 6 ounces! She can roll over
from her belly to her back. She recently started playing in her
bouncy chair! Once she is in it her feet start going! It is the
cutest thing ever!
We all love to cuddle with her and enjoy her smiles. She has taught
us so much about enjoying every moment we have. Not only with her
but our whole family. We are very blessed!
Sean & Daisy Brooks
daisyebrooks@gmail.com
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