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A Timeline of Events
9-17-2002
PLEASE READ
Please send this to everyone who can
pray for Emily Rose.
I have lost a lot of my e-mail
addresses because of a computer crash.
If you know of anyone who knows
Paula and Tracy Scott and their little Emily Rose,please forward this to
them or send me their e-mail address.
It has been a while since you have
heard from me. For those of you who might have forgotten why I have
been begging for prayers for over a year now, it is for my granddaughter,
Emily Rose. Emily was a year old on September 6th.
Emily has undergone a lot since
the last April update. Emily has been diagnosed with Cerebral Palsy,
she is mostly blind, and she has Epilepsy. All of this because of
some unknown viral infection that caused encephalitis, or inflammation
and swelling of the brain when she was 8 days old.
At one year, Emily still cannot
sit up alone. She used to roll over, but seems to have forgotten
how lately. She is not able to hold anything in either hand with
any regularity. She still is not able to close her mouth around a spoon.
With her inability to see and having almost constant seizures, the doctors
have warned my daughter that Emily may be moderately to severely retarded
because her ability to think and retain is constantly interrupted.
Last night my daughter asked me
to come over and hold Emily while she put 3-year-old Dale to bed.
Her husband, Tracy, had to work late and Emily wasn't feeling well and
needed to be held. Emily has been having more and more seizures that
have been getting worse and lasting longer. On the 13th, which was
exactly one year to the day that Emily first got sick, Paula had to take
her to the hospital because her seizures were so bad.
Last night I held Emily Rose in
my arms and watched her grin, showing
her 5 new teeth and grinned with
her. My smile quickly disappeared as I saw her go into a seizure...her
whole body shook and jerked. Her arms extended to her sides and then
rose over her head shaking the entire time. I talked to her, telling
her I was there, that God loved her, that she was safe. Her fingers
closed around my finger and after about
20 seconds it was over, I continued
talking softly to her and she smiled. Two minutes later, it happened again,
and again, and again.
I couldn't stop my tears and I
couldn't stop her seizures and I couldn't stop my daughter's pain or Emily's
daddy's pain, either.
She is losing weight because the
seizures take energy and the calories she needs to grow. Her cultures
came back today and she does not have a urinary tract infection.
They don't know what is causing her elevated white blood count.
Right now, I am waiting for a call
from her parents...the doctors told them to take her to Cardinal Glennon
Hospital in St. Louis, Missouri and to prepare to stay for a while.
I am afraid Emily Rose is very, very ill again, so please start up your
prayer groups for her again, and tell everyone and anyone to pray for her.
Please, please pray that God will relieve her of her seizures....whatever
that takes.
Thank you for reading all of this.
I am so afraid.
Love,
Mary Alice
Mary Alice
phoxxy13@mchsi.com
9-6-2001
This is just to let you know that there will be a
baby today. Paula (Emily's mother) went to the hospital at 7:30am
to have labor induced. Hopefully, Emily Rose will make a speedy debut
and we can all celebrate.
9-6-2001
We have a granddaughter!!!!
We are proud to announce the arrival of Emily
Rose, born just a few minutes ago, so new we don't even know the particulars
of her length and weight, but we have heard that she is beautiful and that
she is a REDHEAD!!!!
Her proud parents said it was an easy birth and
that she is already looking for her first meal.
We are going to see her as soon as grandpa gets
home from his doctor's appointment.
Thanks for all those prayers....she is
in perfect health as is her mother!
9-6-2001
I should have waiting with the announcement until
I had the picture...and here she is!
Emily Rose weighed 7 lbs. 3 ozs, and was
19
inches long with RED hair for sure!!
9-14-2001
Emily Rose, 8 days old, is in the hospital. She developed
diarrhea yesterday and had 13 dirty diapers in approx. 8 hours. She
suddenly showed signs of extreme abdominal pain and Paula took her to the
ER last night. They started an IV with antibiotics and did chest
x-rays, blood tests, etc. They also tried to get spinal fluid without
success. Paul (Grandpa)and I went over to stay with Dale (Emily's
Brother) and when Paula came home a bit after 6:00am she had no test results
yet. I heard the baby crying over the phone when she had called earlier
and the cry was of a baby in extreme pain. Paula said she (Emily)
screamed every time she was moved. Please pray for her.
9-14-2001
She has been taken by ambulance from St. Mary's here
in Jeff (Jefferson City) to the University of Missouri hospital in Columbia,
Missouri. She has shown no improvement and has started to have problems
breathing. Tracy's(Emily's daddy) dad and step-mom are taking care
of Dale, and Paula and Tracy are both with Emily at this time. I
am terrified...please pray for her.
9-15-2001
Emily Rose is doing better!
This morning she is apparently beginning to respond
to the antibiotics.
She is on a C-PAP machine which is like mine
in the fact it is keeping her airway open. She had been gasping for
breath, forgetting to breathe (apnea) and her hands and feet were turning
blue. She had quit crying and had gotten a glassy-eyed stare when
they decided to send her to the Missouri University Children's Hospital.
Two respiratory therapists, two nurses and an
E.M.T. accompanied her to Columbia with Paula and Tracy trailing behind
the Children's Hospital Ambulance. I think they finally got to Columbia
around 10:30 Friday night.
Paula and Tracy finally got to see her and she
was turning pink again. She is quite a fighter! They said they
knew she was getting better when she started getting irritable when they
had to mess with her.
The nurses loved her red hair.
It seems she has a virus called RSV or Respiratory
Syncytial Virus. All babies get this virus in the first 2 years of
life and it is highly contagious. She could have gotten it from the
hospital or any of her visitors or even just in the air. It is said
to live on countertops and other surfaces for 4 to 7 hours. Premature
infants and ones with lung diseases are more prone to severe reactions
than others, and boys more than girls, and twins more than singles, and
ones that have been around smoke even more so. 2% die from it.
Emily doesn't fit into any of the above categories. They said she
might do well for a while and then slump, but they think she will be okay
with no lung damage. It could be 3 days or a week or longer before
the virus runs it's course, but it will happen.
Paula was VERY impressed with the hospital's
setup and the expert care Emily has been given. She thinks that the
decision to move Emily to Columbia saved the baby's life.
I am so happy to be able to send this kind of
information to you today. I have been so scared...
Please keep praying...I think the combo of prayers
and antibiotics may do the job.
9-16-2001
Emily is now in critical-stable condition.
The doctors are still not sure of the cause of her illness. An EEG
showed that her apnea is really continuous small seizures. She is
receiving phenobarbitol for this condition.
There is another phenomenon that has them baffled
as to the cause: while the trunk of her body is very red, her arms
and legs are white. Paula said Emily's eyes are not focusing well
on things and the staff said that was because she is so ill. She has had
a catscan that (unofficially) looks normal. She will be on antibiotics
for a week. They also said that it is possible that she could get
well before the cultures show what kind of viral infection she has.
Paula and Tracy are staying at the Ronald McDonald house tonight.
The hospital staff kept telling Paula that she needed to eat and to keep
up her fluid intake and she needed REST. They said that as long as
Emily sleeps, she is in no pain, so Paula and Tracy finally agreed to go
for some much needed sleep.
Emily is still on the C-PAP machine that is helping
her breathe. This type machine forces air up her nose and down her throat
to help keep her breathing, but it is NOT a ventilator that does her breathing
for her.
Emily is a long way from being out of the woods
yet, so please keep bombarding heaven with your prayers.
9-17-2001
Tonight I rode to the hospital with Paula so I could
see Emily and see for myself how she was doing.
When we got there, I stood and watched the monitor
that shows her pulse, respirations, heart rate, blood pressure. Three
times within 6 minutes she quit breathing, one of us would stimulate her
by shaking her foot or tickling her so that she would finally gasp and
with her chest heaving, she would take a few more breaths.
Her eyes were tightly closed, her body and extremities
were extremely pink and very tense, but her face and head are white. There
are tubes in her nose, her mouth, in her head, the backs of her hands and
her heels. She is getting a unit of blood, something for nourishment,
3 different antibiotics, Phenobarbital, Dilantin. They said she was too
sleepy to remember to breath, so we left her room so they could insert
the ventilator tube or intubate her.
When we got back, I watched her chest rise and
fall more rhythmically and felt some apprehension when her hands turned
blue. The nurse made an adjustment on the machine and Emily turned
pink again.
The ventilator is definitely breathing for her
for 20 breaths, but she can take more breaths if she wants to....and she
absolutely wants to!
The doctors came in for rounds while I was there,
and for those of you who know Jefferson City and know about Arris Pizza
Shop and Arris Pardolas, you might be interested to know that his son is
a top doctor in the Neonatal Intensive Care Unit and has been Emily's #1
doctor.
I watched him with her and was very impressed.
The difference between this hospital and the ones in Jefferson City is
about a million points...these doctors give you all the information you
want, without being asked. They know parents are terrifed and provide
all the answers before the questions are asked.
I left my granddaughter in the hands of God and
in the hands of these doctors. Please pray for all of them, for all
of us, but especially for Emily Rose.
9-18-2001
We just got back from Columbia and the news is not
the best. The doctor was there and talked to Paula and Tracy. He
said that Emily had had more seizure activity last night and they were
going to up the Phenobarbital dosage a lot. They said that this was most
likely a viral infection. If had been bacterial in nature she would
have been getting better already. They said that they had found more
edema in her brain and that it had caused her pupils to quit reacting as
well as they should. The pupils were no longer of equal size.
The doctors had questioned whether steroids were an option to reduce the
swelling and decided that for an infant of 12 days that it was not in her
best interest. The brain is apparently inflamed at this point
because they called it encephalitis. They said her head was larger
than it had been and that also indicated swelling of the brain. It
also showed up on an MRI. They are testing regularly with MRIs, EEGs,
CATSCANS, spinal taps and blood cultures and probably a lot of things too
complicated for me to understand or repeat even if I had remembered, which
I don't.
Emily is an extremely ill little girl and her
parents request that there be no visitors at this time. They of course
are having a very hard time dealing with this and it is easier for them
to do this alone.
Emily was laying on her side when I saw her,
her entire body was pink and warm, and her eyes were tightly shut.
She had a red and black bow in her red hair and a stuffed bunny rabbit
in her bed. She was breathing with a ventilator, but she was initiating
many breaths on her own. She is not on oxygen, just room air.
I saw her sigh once and I know that was done by her. Although she
is a very sick little girl, please don't give up praying for her, at this
point please get everybody you know to pray for her. It is up to
Emily to fight for her life and she will need all the help she can get.
Please beg EVERYONE YOU KNOW to beg EVERYONE THEY KNOW to pray for her.
Paula will let me know how Emily is doing and
I will e-mail updates as soon as possible.
God bless all of us.
9-18-2001
Emily is my brand new baby granddaughter.
These are the daily e-mail that I have been sending
to my family. I am sharing her story with you so that I can get you to
pray for her too when you pray for the rest of the country. Please,
please pray for her, for her parents, and for me too.
9-18-2001
Paula just called with good news! Emily is
better!
She and Tracy both got to hold her tonight.
The EEG showed no more seizures this evening and they are going to hold
off on her dose of Dilantin until Thursday.
They have cut the ventilator respiration rate
from 20 to 18 to allow Emily more chance to breathe on her own. Paula
said that she thought Emily was trying to stretch and to yawn too!
After watching her this morning and hearing what
the doctors had to say, I was certainly feeling depressed, but this has
made me feel more hopeful again. I just know her progress tonight
has to do with all of you praying for her. We will be returning prayers
as they come in...hope they are in stamped, self-addressed envelopes.
Thank you and please don't quit....she has a long way to go.
9-19-2001
First, I want to thank everyone for their thoughts
and prayers. I honestly think they are helping.
Tracy and I are home for a bit to take care of
bills and phone calls and to see our boy. Emily is stable and making tiny
improvements. She still has a great deal of edema all over. We haven't
seen the neurologist today to find out if her brain swelling is better
or worse and the swelling there is of the most concern. But the last EEG
showed no seizure activity and they have lowered the rate on the ventilator
to 16 (was 18 last night and 20 yesterday morning) to let her do more of
her own breathing. She is on room air only. They took out her catheter
last night and took her off the Dopamine for her blood pressure. All good
signs. She is also doing some moving around of her own -- stretching and
yawning, but hasn't opened her eyes yet.They have her on TPN and lipids
for nutrition to give her some more energy and I am hopeful that today
or tomorrow, they will give her a feeding tube to give her my mother's
milk.
We are heading back up to Columbia later this
afternoon. Again, thanks for the the support. We really cannot say how
much we appreciate it.
9-21-2001
I am sending this in it's entirety because I don't
want anybody to miss anything and it is rather late.
Paula forgot to beg for prayers again, but that's
my job, soooo, please pray for Emily, and Paula & Tracy......oh yeah,
and me too.
hugs...
Dear Mom:
Forgive me for not calling you, but it is very
late now. We found a computer where we have access to the internet,
so that I can send you this update.
Emily made a lot of progress this afternoon.
They upped the albumen level in her IV and started her on Lasix (sp?) a
diuretic. They also put the catheter back in and she started peeing
finally. She has lost about 300 grams (11ounces) since this morning.
They also changed her ventilator settings so
that now she has to finish the breaths that she initiates on her own.
This is preparing her for extubation by making her exercise the muscles
in her diaphragm. She is doing very well with this.
I've saved the best news for last: Tonight,
just as we were getting ready to leave at 10:15 pm , she opened her eyes
and *looked* at us. She looked all around and really focused on our
faces. We got so excited watching her and talking to her that we
stayed another 45 minutes with her, hence the late updated.
We feel as if she may have turned a corner and
is going to make it through all this. She is not out of the woods
yet, but we see light.
I found out more about the little Mennonite girl:
Her name is Cynthia, she is 5 years old, and she came in with a viral infection.
She had 5 cardiac arrests the first night she was here, including one on
the helicopter on the way from St. Mary's. She has a tracheotomy
to help her breathe and has had a fever now for days. They finally
found the cause today -- she has an ear infection that didn't clear up
with the antibiotics she's been given. She is having surgery again
tomorrow to have tubes put in. She is very, very weak and the surgery
is risky in her condition. Tracy and I are praying for her.
We didn't get any results from the cultures today,
and they are having us wear masks now when we go to see her. The
nurses all think that it is silly, since everyone has been exposed to her
for a week, but the infectious disease people at the hospital think that
it is necessary.
Hopefully, the cultures will come back tomorrow
and we will know if we can get rid of the masks and open her big
door.
Love,
Paula
9-21-2001
Emily is off the ventilator and is breathing peacefully
on her own!
She seems to be making progress by leaps and
bounds. The blood cultures are in and the airborne virus they
feared is not the problem. It is not herpes or any of the others
they thought it could be.
It is a mystery. Emily has been moved from
the warming bed to a regular crib, she has been given a stomach tube and
has been given 5 ccs of her mother's milk. They are going very slowly
here because it is feared yet that she might not be able to metabolize
the milk. She will slowly be taken off the Phenobarbital and the
Dilantin so as not to shock her system into more seizures.
She has opened her eyes and can focus on things,
following light and her pupils are normal. Her room is full of angels
that you all sent to watch over her.
Tonight my child and I finally admitted that
we both knew how close Emily came to returning to the arms of her Creator.
It was only a few short days ago that the doctors were admitting to the
seriousness of Emily's condition and paving the way for us to accept what
seemed at the time to be the inevitable. Maybe it's too soon to celebrate
life, but it certainly is time to thank all of you for all those prayers
you have so generously offered in Emily's name. We cannot thank you
enough...If I didn't believe in the power of prayer before, I certainly
do now!
If ever you have need of prayer, just let us
know and we will be there for you. You have certainly made the difference
for us.
PRAYER POWER
I almost lost a grandchild
God nearly took her home
Friends, relatives, and Internet friends
All prayed He would postpone
God had His very hand on her
And, of course, God's claims come first
But, He was bombarded with requests
To leave her here on earth
So God, I think, had second thoughts
He saw she was loved so much
He smiled then on our Emily
And released His gentle touch
So many prayers were said for her
God decided He would wait
He still wants her home with Him
but he has much delayed the date.
Bless all of you who are praying for her,
please don't quit just yet.
We love you all......
Emily's Family
9-24-2001
This will hopefully be the next to last update that
you will receive about Emily. Today she is beginning to nurse again. She
is receiving the last of her antibiotics and they are cutting her Dilantin
in half.
She will be on Phenobarbital for anywhere from
one month to two years, but it is given orally now. She is still
rather swollen and sleepy but when she does wake up (she seems to be a
night owl) she is very alert and alive. Most of the tubes and needles
have been removed and she will be moved from her private room now.
The good news is she probably won't be in the ward very long.....SHE GETS
TO GO HOME
possibly as soon as Wednesday!
While we don't know what could happen to Emily
down the road because of this serious illness, I think it is positively
amazing that she has made this much progress in so short a time.
I think that all of your prayers have really made the difference.
Just a few more prayers....please?
God bless all of you!
9-25-2001
Emily's Going Home!!!!
She could still use your prayers.
9-27-2001
I was there tonight, I got to hold her. I cradled
her little head against my shoulder and watched her sleep. I whispered
to Emily how beautiful she is and to God how beautiful He is and finally
felt the knot relax in my stomach for the first time in days.
Emily is home, thank God! She has emerged
victorious over all the obstacles set in front of her. She will finish
her Dilantin on Saturday but, because the doctors fear she may have more
seizures, she will be on the Phenobarbital for at least a month and possibly
two years. Tracy and Paula will know more in a month when Emily goes
in for a MRI.
She is eating very well now and when she wakes,
she looks around at faces and lights. She passed her hearing test
this afternoon and her vision test as well. It is possible that there
may be some problems down the road, but her parents are aware of this and
they will see that her every need is taken care of. Looking at her
right now, you would never know she had been so very close to death.
She kicks, and waves her arms,stretches,cries,burps,hiccups,coughs...and
oh yeah, she does a few other things we don't discuss here....I know....I
heard her.
I know there will probably be some anxious moments
for her parents this first night home,but God will protect this child....our
Emily, tonight as he has been doing for the last 21 nights.
This will be my final update on Emily. I hope
no one minds that all of the e-mail you have sent in response to our begging
for prayers will be printed out and bound into a book so that Emily will
know what wonderful people prayed for her. We can't thank you enough
for remembering Emily in your prayers...please let us know if we can do
like-wise for you. God bless you all!
Love,
Emily's Family
October 17, 2001
I am writing this update in reply to all of you wonderful
people
who have asked about Emily Rose. I have
enclosed a recent picture of her so you can see she is alert and doing
well and that she is a true redhead.(See Picture Page) Emily's last
trip to her pediatrician showed her to have gained a pound and grown an
inch and that she has a seemingly harmless heart murmur. Her last
trip to the neurologist showed she needed her Phenobarbital dosage raised
because she had grown and her larger body needed more of the medicine.
It also showed that she needed physical therapy because her arms and legs
were stiff, but all in all, she is doing very well.
I was holding Emily the other day while
she slept. To my way of thinking there is nothing more peaceful in
the whole world than to hold a sleeping baby. She was all warm and cuddly
and smelled so sweet....she even smiled in her sleep. My dad used
to say babies smiled like that because they were being kissed by the angels.
Then one eye opened....
She peered at me in this fashion for a considerable
amount of time, studying me intently presumably to take in the fact that
I was not fashionably dressed...and then the other eye opened.
Now you have to understand that Emily has been
through a lot in her very short life, and she will brook no nonsense when
it comes to her eating arrangements.
She KNEW I didn't have the proper facilities
with which to provide lunch and she gave me a seething look of indignation,
opened her mouth and let out a howl of frustration and disgust indicating
that she had been grossly abused. Needless to say, her mother appeared
on the double and immediately took care of Emily's
needs.
At this point I felt totally useless.
I sat there and thought of what I could do and
decided this was a good time to say some extra prayers for all of you who
had prayed for Emily when she needed you the most.
God bless you all!
November 15, 2001
This is written to you, my e-mail friends, from my
daughter Paula, mom to Emily Rose. She wanted me to send this to all the
people I asked to pray for Emily and for you to send it to all the people
that you asked to pray for Emily. You will all be part of our Thanksgiving
prayers from now on.
We will not forget. God bless you all!
Love...
Mary Alice
----------------------------
Dear All:
Next week, my family will join hands around
our table on Thanksgiving Day to once again give thanks to God for all
our many blessings. Joining us this year is our new baby daughter,
Emily Rose. Just having her there is enough to be grateful for.
A new baby is always a miracle and a gift from God.
But my family has a much bigger reason
to be thankful. As many of you know, we nearly lost Emily more than
once this year. My pregnancy was threatened early on by a placental
abruption and we nearly lost her before we even got to meet her, or know
that she was a girl. My mother sent out a plea for prayers and they
were answered. By my twentieth week, the abruption had healed.
The rest of the pregnancy and birth were uneventful and Emily was born
September 6, 2001. She was beautiful and healthy and we were in love.
On September 11, we watched the news
in horror as terrorists attacked New York and Washington. Two days
later, as the nation mourned, we began a crisis of our own. Emily
became ill with what was determined eventually to be viral encephalitis.
She had seizures due to the brain swelling and needed to be placed on a
ventilator to help her breathe. She had so much blood drawn that
she had to have a transfusion. We were told later that they never
expected to be able to take her off the ventilator. Every time we
went into her room, we were given some new piece of bad news about her
condition.
She had been in the hospital for
six days when they told us that she had viral encephalitis. They
didn't know what virus caused the encephalitis, and in fact, have never
determined the cause of her illness. The doctor was concerned that
the swelling would reach her brain stem and if that happened, she would
probably die. It was the first time it had really been put into words
and I cried. My mom and dad were there as we received this news.
When my mom got home, she emailed everyone she knew to once again plea
for prayers.
Something happened.
By that afternoon, Emily had made enough progress
that the doctors began weaning her from the ventilator. She was extubated
two days later and was allowed to begin slowly receiving my milk again.
Every day, she made progress and twelve days after her illness began, she
camehome. We were a whole family once again.
Emily is doing wonderfully now.
She has grown two inches since birth and gained over five pounds.
She is bright-eyed and alert and interested in the things around her.
She is doing some physical therapy now to help with some muscle stiffness,
but is making great progress and will soon be done with that. She
still has her bright red hair (and a temper to match!) and it looks as
if she will have the same clear blue eyes as her older brother.
Dale, by the way, adores her and loves to kiss
her head. We see glimpses of a smile every now and then and hope
to see a real one soon.
I can only believe that it was your
prayers that saved our daughter's life. I don't know how many people
prayed for her, but from the email Mom has received, I have reason to believe
that it is in the thousands. People from all walks of life, of all
religious denominations, wrote not only to say that Emily was in their
thoughts and prayers, but that they had passed her story on to others.
It just doesn't seem like enough to only to say thank you for such caring.
It is my personal belief that even
bad times are gift from God as they help to strengthen people and bring
them together. At a time when our whole nation was coming together
to mourn for those lost in the attacks, you all came together to bombard
Heaven on the behalf of a tiny little girl that most of you will never
meet. I can only hope that someday, I can make her
understand just what you did for her.
Thank you for praying for our little
girl.
Tracy, Paula, Dale & Emily Scott
December 10, 2001
I really didn't want to bother you, to put an extra
burden on you when I know you have about all you can handle anyway, but
I couldn't take the chance by not asking you to pray for Emily Rose.
Tonight after my daughter's van was loaded with
all the extra Christmas decorations that her father and I won't be using
anymore, she took Emily from my arms and fed her. Emily seemed content
and smiled...and then she suddenly got very quiet and looked up.
Her gaze traveled from right to left and then did it again. I made
the remark that she looked like she was watching an angel fly by when my
daughter said, "She's doing it again....she's not breathing!" I looked
at Emily and her lips and skin around her nose and mouth were turning blue.
We came to the conclusion that this indeed was a seizure and that she had
done the same thing twice earlier in the day. Paula called the doctor
and was told to bring Emily to the ER. They took a lot of blood,
weighed and measured her, checked her throat and ears...and decided that
she had a minor ear infection and had gotten over 4 pounds heavier than
what she weighed when they had set her Phenobarbital dosage, so they gave
her a bigger dose of Phenobarb and an antibiotic for her ear infection.
She is home now....but of course we are worried
and we need the assurance of prayer. Hopefully it was just the fact she
had outgrown the dosage, but please pray for Emily anyway.
Thank you so much for all the prayers you have
already
offered for Emily, we are all so grateful to
you.
Love,
Mary Alice
April 1, 2002
This is an update for all of you who prayed for Emily
Rose when she
nearly died of viral encephalitis at the tender
age of two weeks. I thought maybe you would be interested in hearing
how she has progressed.
Emily is almost 7 months old now. She is a beautiful
blue-eyed redhead who smiles, can get loudly verbal, loves to swing, is
learning to roll over and has her first tooth. She adores her 2.5
year old brother, Dale. Paula has quit her job to be able to take care
of Emily full time and not expose her to all of the colds and flu that
are always at children's daycare centers.
Naturally we were hoping that there would be no
negative effects from her illness but this was not to be the case.
Several weeks ago, Emily was seen by a pediatric
opthamologist at Cardinal Glennon Hospital in St. Louis, Missouri, who
said that Emily could see very little, if at all. Today she was seen
by a pediatric neurologist also at Cardinal Glennon Hospital in St. Louis.
His diagnosis: Cerebral Palsy, Epilepsy,Cortical Vision Impairment.
On April 10, she will return to Cardinal Glennon for an MRI of her brain.
She will need a hearing test and they will start speech therapy when she
is a year old.
Emily has already had a lot of physical therapy
and will have a lot more. She has hypertonia which means her muscles
are tight, but she has shown improvement especially since Paula is home
full-time and is able to work with her more often. Now that she has
been diagnosed, she will be able to get all the proper care she needs.
I was playing with her yesterday afternoon and
I put a very soft furry Winnie The Pooh bear in her arm. She turned
her little face toward it, tentatively licked the fur, grinned, and then
put our her little pink tongue and licked her fist. She is already
beginning to use the senses she has to learn about the world.
I think it is positively amazing!
I am asking once again that you pray for Emily
Rose. This time it will be a long-term deal. She is going to
need all the help she can get over the long haul.
Oh, and one more thing...the doctor said today
that she definitely was very close to death that first time I sent out
a plea for your prayers. Paula and I discussed today that there was
no other
apparent reason for her return from the edge
of death except your prayers.
God Bless you all!
With love,
Emily's grateful family
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