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Email: Tammhe@aol.com
UPDATE:
10-3
We always knew that one day our Emmy
would become an angel but I never thought
it would happen after only 6 years of
bringing happiness and love to our family.
On Sept. 27th Emmy passed away at 7:05 pm.
I know in my heart she is in a much better
place and doing all of the things that
children do. But I miss her so much. I
can still feel her in my arms and see her
smiles. I feel so honored and privledged
to have been trusted with such a darling
little life.
Please keep our family in your prayers.
UPDATE 9-24
It has been a long time since I have sent
in an update. Emmy for the past three weeks
has had pneumonia again. She has been on 4
different antibiotics with no success of
clearing up the pneumonia. She will be
having surgery to put in a mediport
(permanent IV) so she can receive antibiotics.
Her sats are staying in the upper 80's and
she is on 6 liters of oxygen. Her seizures
have calmed down since she has been sick
this time. Please keep Emmy in your prayers.
Surgery is even more risky with her already
having pneumonia. Thank you so much.
UPDATE: 8-5
For about a month now Emmy has been
doing really well with her respiratory
issues. However, she is not so lucky
with her seizure disorder. Seizures
have been more frequent and lasting
longer. She is a trooper and still has
the most beautiful smile ever.
UPDATE: 2-26
EM's heart is in good shape. There is a
little right axis deviation (where
the right side has overworked), but it
still looks great! Dr. Boone did an
echocardiogram and said her heart is healthy!!!
I think he may have been a little surprised
after listening to her lungs!
(they sound terrible).
Also,
Sunshine Foundation has granted her wish
to go to Disney World. And she gets to
go sometime in May! They have given us 5
dates to choose from. We will be there
for 4 days. I am so excited that she gets
to go before her health declines anymore.
Thanks to everyone for the prayers and thoughts!
You will never know how much they mean to us!
With our love,
Tammy, David, Hillary and Emmy !! = )
UPDATE: 2-9 11:30 PM
Just wanted to let everyone know that Emmy
is improving!!!!!!!!!!!!!!! Her sats are 100 %
on 2 lpm of oxygen! Her heart rate is 130,
respirations 35 adn her bp is 150/52. She is
fighting people when they try to move her.
We have had her lying on her stomach and she
is actually trying to lift her head up and
turning it from side to side!!!!!!! She is
doing great!! She may be moved to the floor
tomorrow. Breathing treatments are every 3 hours
now and her chest pt. Things are looking better.
Hopefully she is on the road to recovery!!!!
Thanks to all of you for your thoughts, prayers
and well wishes. They have been a blessing
to us!
With our love,
Tammy, David, Hillary and Emmy
UPDATE: 2-12
Well, it certainly has been interesting
around our house last couple of days.
Emmy is on 2 lpm of o2, still getting
breathing treatments every 3 hours, a
nurse has been coming to see her to give
her rocephine (antibiotic) shots. Her
sats have been staying in upper 80's to
mid 90's. She has to lay on her tummy
for a couple of hours at a time. The
dr. said that would help move all
the stuff in her lungs around. Not to
mention that she has a really bad
irritated butt from having diarrhea.
I got her to laugh a couple of times
yesterday! It was great to hear but it
takes her breath. Her blood pressure has
been staying on the low side. The
nurse wanted to call the dr. today
because she said it was too low. 5?/44.
That isn't near as bad as 67/19. Anyway,
just wanted to keep everyone posted. I
haven't been reading much mail and there
is a ton of it. I want to say thank you
to everyone who has written us! We
appreciate your thoughts and prayers.
With our love,
Tammy and Emmy
UPDATE: 2-9
First of all I want to say THANK YOU to everyone
who has sent their prayers and get well wishes
for my Emmy. It all means so much to me. YOu
are truly a caring and terrific group of special
people!!!
Now for the update:
Em's bp is getting dangerously low. We are
giving extra fluids through her gtube. Heart
rate, respirations are slowly going up. Sats
are haning in the low 90's on 8 liters of oxygen.
They have exhausted every site for an IV. So she
doesn't have one. I won't let them try for another.
She looks like a bruised up pin cushion. The only
time she is waking up is to seize. Day before
yesterday she had a little better day. My mom
got her to laugh out one time. Then she was so
exhausted she slept for most of the day!
The family is holding up pretty well so far.
Hillary is staying w/ family and friends and
having a great time visiting with everyone!
Thank goodness. Dave I think is having a hard
time with it all! he doesn't talk much but
ya'll know me I try to drag it out of him! hehe.
Well, that is about all for now. I will try
to post from time to time. I am staying in
the ICU room with her 24/7 and a great friend
of mine loaned me his laptop so I can keep in
touch with all my terrific friends.
With our love,
Tammy and Emmy
UPDATE: 2-3
Hello everyone
Just got back from taking Emmy to the dr.
Her platlette count is low, 70,000.
The dr. is going to check her again on Monday.
Her seizure meds could be causing it! Her
white count was 13,000 so it was a little
elevated. She gave her another rocephine
shot (antibiotic). As far as her lungs go there
is nothing more to do for them. We have
chosen not to go to the hospital and
not to do any invasive procedures to prolong
her life. I did ask the dr. to check into
getting some nursing here on a regular basis.
Maybe 3 or 4 hours a day. She said definitely
that she would check into it.
So this is pretty much it for now.
Please keep us in your prayers.
Thank you.
UPDATE: 2-1
For almost 4 weeks she has been sick with
pneumonia. Past couple of days she
has not been doing so well. She is on
the maximum amount of oxygen that she
can be on at home. Her dr. wanted us
to take her to the hospital today but
we have decided to keep her home until
we can't anymore. I am giving breathing
treatments every 2 hours. She needs to
be suctioned a lot. And I am doing chest
PT as much as she will tolerate. Her
little nose is irritated from the o2 canula.
Please keep her in your prayers. She
(we) really need them now. Thank you.
Tammy, momma to Emmy 6 yrs old. severe
multiple disabilities.
UPDATE: 1-15
I would like to ask for prayers for my daughter
Emmy. She has had pneumonia for almost 3weeks
now. She is having a hard time getting over it
this time. We went out to dinner last night
and took her with us. She was so uncomfortable.
That is the first time we have had her out since
2 weeks ago when she went to the dr. She is still
requiring 2 1/2 liters of oxygen. I am still
giving breathing treatments and chest percussions.
Thank you.
Tammy
UPDATE: 1-6
I would like to thank everyone that has kept
Emmy in their thoughts and prayers. I am asking
again that everyone keep her in their prayers. She
isn't getting any better. Last night while still
on 3 liters of oxygen she started dropping her sats
into the 80's again. I still can't hear any air
moving through her lungs. Dr. says that it is very
little moving through. Still doing chest percussions
and breathing treatments often. We are trying
very hard to keep her home with us and not have to
go to the hospital. My sincere thanks in advance.
Tammy mom to Emmy 6 yrs old.
UPDATE: 1-3
My daughter Emily is having a hard time breathing.
Lungs sound like pneumonia, still no fever. Her
sats are dropping into the 80's and she is on
3 lpm of o2. She has chronic lung disease and
has severe multiple disabilities. Please keep
her in your prayers. Thanks so much Tammy
This is my six-year-old daughter, Emily.
We call her Emmy. She was typically healthy
and developing on target…sitting up, crawling,
holding toys, and taking a bottle. When she
was six and a half months old she had viral
encephalitis. This was a terrible devastation
to her brain. Now she is diagnosed with mixed
quadriplegia cerebral palsy, total care, chronic
lung disease, oxygen dependant, CVI (legally
blind), scoliosis, hearing impairment, g-tube
fed, severe seizure disorder (uncontrollable).
She functions mentally and physically on a 0-3
month level. Emmy likes to be held, talked to,
bounced and she loves music. She has the most
beautiful smile that I have ever seen. She is
such a joy and inspiration to our family. She
is loved by all that meet her.
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