Emmie
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MERRY CHRISTMAS FROM EMMIE & FAMILY!!!
This year was a blessing to be home to enjoy Christmas!
Emmie and her siblings with their new Christmas sock monkeys that Mommy made
Emmie has been enjoying the cooler temps this fall! She and her best friend, Canine Companion Lilly, have had fun cheering on big brother Christian in baseball. Emmie just LOVES baseball!!
Lilly goes everywhere with Emmie... she is such a blessing!
Emmie has had a pretty quiet summer; she hasn't been able to float in the pool for over 3 years because of her body cast, so we try to find fun indoor things to do to keep her cool.
She enjoyed cheering for her big brother throughout his spring and summer baseball games, and she's looking forward to the fall when temps are cooler and she can get lots of fresh air!
We've had a few struggles with health insurance, which seems to be a constant battle to get things approved. She has chugged along through her IV infusions every 11 weeks, and the side effects have been a bit easier on her lately. She's a real trooper!
Her best buddy is her canine companion, Lilly, who goes everywhere with her, including the hospital! Lilly has been a blessing from the moment they met, and she helps to distract Emmie from the hospital routine and helps her with many tasks. She is truly a gift sent from Heaven!
Please join us for our SPRING FESTIVAL FUNDRAISER to benefit Emmie's Fund!
Saturday, April 30th, from 10am - 3pm
Marlton Assembly of God, 625 East Main Street, Marlton, NJ
There will be crafters, artists, vendors of all kinds, great FOOD, entertainment, face painting & balloon art for the kids, a bake sale, and HUGE Chinese auction with incredible prizes!!
This will be a fun family event that you won't want to miss!
**Our fundraising goal is to have the family van adapted for Emmie. She has recently been approved for a special power wheelchair with extra shock absorption to help with her spine fractures, and the van needs to be specially adapted to accomodate this new chair.**
January 1, 2011:
Well, it's been quite a while since we've updated...
Emmie & family were BLESSED to be HOME for another Christmas season!! We enjoyed a quiet Christmas at home, and counted our many blessings the Lord has bestowed upon us throughout this past year!
We are very thankful for all the friends we've made and for all the prayers & love you send our way! God bless you!!
Check out te "New Pictures' tab above for family Christmas photos!!
November, 2010:
Emmie celebrated another BIRTHDAY!!!!
ELEVEN years old!!
Many of you may remember that the doctors all said she wouldn't live to be 18 months - 2 years old! And here we are celebrating 11 years!! We give all the glory to GOD! Emmie is blessed with many incredible doctors, but we know that Jesus is ultimately her Healer! Thank You Lord!
Sept. 10, 2010:
This week we spent a day with the A.I. Dupont Feeding Team, to try and determine WHY Emmie aspirates and hasn't been able to eat since she was 2 years old, and to look into whether or not it's possible that she will ever eat again...
We met with the Developmental Pediatrician, Nutritionist, and Speech Pathologist. We've started oral-motor exercises to work muscles used in eating (this therapy was never done through CHOP)... We've also been referred to the special-needs dentist & palate surgeon, to see if this may be structural. There's concern about the little cough she always has, as she may be aspirating saliva, in which case chances of ever eating would be very slim. So we will try the oral-motor exercises for several months, and then have her re-evaluated, and possibly try another swallow study. PLEASE KEEP PRAYING! Emmie really wants to EAT!
August 9, 2010:
All the specs have been written out & the paperwork should be on its way to Medicaid soon for approval for Emmie's new power wheelchair! We are praying for favor in the timing of this, as she is in a great deal of pain from the compression fractures in her spine and needs a chair with better support & suspension.
Now that we are in the process of getting the new chair, we need a MIRACLE of getting the family van adapted to accomodate it! Freedom Motors has given a price of $16,000 to adapt our van so that Emmie could drive right in the back & be automatically secured in to the middle row!
We know this sounds like an enormous amount of money to raise, but we also know that with God all things are possible! Please pray along with us for Emmie to get the wheelchair she needs and our van to be able to accomodate it, so that we can greatly minimize all the pain she is experiencing!
God is sooooo good!!!
Emmie & Lilly,
Canine Companions for Independence
Team Training & Graduation Video:
http://www.onetruemedia.com/shared?p=b905664345eb72329c3e81&skin_id=701&utm_source=otm&utm_medium=text_url
July 2, 2010:
Please keep Emmie in your prayers! She has been in a great deal of pain from the compression fractures in her spine. Her present wheelchair has very little support and she has outgrown it, so mobility is a painful issue right now.
With these new compression fractures causing so much pain, she has a few needs we are praying for:
We've met with the physical therapists at the wheelchair clinic at AI Dupont and have chosen a new wheelchair which tilts, reclines, and has good suspension, which will help her pain very much. The problem is, she is in need of it NOW and Medicaid usually takes about one YEAR for approval!!! PLEASE pray for FAVOR in this!!
Also, power wheelchairs weigh more than 300 pounds, and Emmie's mom & sisters have been LIFTING her present one into the back of the family van, causing a lot of wear & tear on the wheelchair as well as everyone's backs! We NEED our van adapted!! We've got the estimate for adaptions that we need, and they will be $16,000. We need a miracle! We know this is not too big for God ... with Him all things are possible!
Also, please just pray for HEALING! The pain causes her cyclic vomiting syndrome to kick in, which is a horrible thing. The vomiting goes on for days, or even weeks, around the clock, and the wretching causes NEW fractures in her spine! Poor baby. It's so hard to see her suffer through this!
Yesterday we spent the day at AI Dupont test-driving wheelchairs and having a GJ tube change. The GJ change in the O.R. went smoothly, and Emmie was comforted to have her service dog Lilly with her! Our next round of IV infusions is scheduled for next week, and lots of cardiac testing the week after. Please pray for peace through all of the upcoming procedures! Emmie is excited to be able to bring her sweet best friend Lilly along with us to the hospital!
Thank you for praying and believing with us for a miracle! In Jesus' name!
WE DID IT!!! We graduated!!! 
Dear Friends,
Emmie & Mom have just completed an intensive two-week training course in Medford, NY at the Canine Companions for Independence Northeast Regional Training Center. Emmie has been carefully matched with a special assistance dog. Her new best friend has been carefully trained to open & close doors for Emmie, turn on and off lights, pick up things she may drop & deliver them to her lap, and many other commands. Possibly the most important thing she does is to put a smile on Emmie's face, even though she has been in a great deal of pain. She was carefully matched with Emmie because of all the commands she performs so well, and because she is particularly gentle. We have worked very hard while staying at CCI to begin to form a very important and delicate relationship between Emmie & her new dog!
In order for her new dog to bond with her and be able to perform as a working dog, we need your help. If you could adhere to the following guidelines it would be so very helpful to the success of Emmie's relationship with her working dog. Thank you so much for your cooperation!
GUIDELINES FOR INTERACTING WITH AN ASSISTANCE DOG:
CCI Instructors have written the following guidelines and we encourage all people who will come into frequent contact with an assistance dog to please follow our recommendations in order to foster a strong relationship between the Graduate & his/her new dog:
Working dogs can be easily recognized by their identification vest and leash. Certified working teams will also have a picture identification card with them at all times. CCI dogs wear blue vests with a CCI logo patch on the side.
Keep in mind that working dogs can be distracted from their jobs. In the beginning of a relationship with a working dog, it is very important for the dog to remain focused on his/her human partner.
WHILE THE DOG IS WORKING:
1. Always ask before you pet! It may be advisable for you to shake hands with the dog, at the command of the handler, or not to pet at all (depending on the handler's decision). Also remember that if you are petting the dog and the handler gives the dog a command - STOP PETTING the dog!
2. NEVER feed a working dog! You will be luring the dog away from his/her very important job as an assistant dog. Working dogs do not rely on treats to perform commands and they are well fed at home!
3. Limit your interaction with the dog as much as possible. It is important for the graduate to meet as many of the dog's needs as possible, such as (feeding, praising, commanding, petting, playing, grooming, and exercising).
4. DO NOT let other dogs initiate contact with a working dog while it is on duty. Even though CCI dogs have been trained extensively around ALL sorts of dogs, it is still common courtesy to prevent other dogs from distracting a working dog. There are laws in some states that protect working dogs and old pet owners accountable for damages that their dog may cause to a working dog.
It is best to ignore a dog while it is working. The dog will then begin to automatically look to is/her handler for its needs, as well as remaining attentive and willing to work.
Remember that assistance dogs DO get time to relax and play, but when they are working they need to be focused and serious about what they do. They play a very important role in the life of a person with a disability.
Thank you very much for your cooperation in helping a successful relationship grow between human and canine.
For additional information regarding any aspects of CCI's Assistance Dog Program (applications, puppy raising, donations, and volunteer opportunities), feel free to contact the Northeast Regional Training Center at 631-561-0200.
Sincerely,
The Instructors and Staff of the Northeast Regional Center
May 11, 2010:
Emmie & Mom have been working through intense training
at Canine Companions for Independence,
Long Island, NY, since last Monday.
If everything continues to go well, we will graduate this Friday!
Emmie is absolutely thrilled with her dog and has learned
50 incredible commands already!
Yesterday we went to the mall and worked on tugging doors open,
pushing doors closed, untangling her own leash, pushing lights on
with her nose & switching off with her paws!! Today we practiced
more commands at a local grocery store,
then had a private session working on Emmie walking with
her gait trainer, dog beside her off leash, without mom,
and Emmie giving the commands! They were amazing!
We also had our first one-on-one conference with the trainer
and we got very high marks! All the trainers (and WE) are very happy
with this match - a PERFECT match!
Emmie says she is so happy to be here and her dog is her best friend!
Pictures & video soon to come!
April 26, 2010:
We are praising the Lord for showing us favor in getting
Emmie's new body cast!
This is what they did with the old one:
The new body cast is helping to ease her pain a bit, but she is still hurting.
We got some new test results back which show why she is in so much pain: she has new compression fractures at T3, T4, T5, T6, T7, T9 and T11!
That's almost her entire spine! Poor Emmie...
but she continues to amaze us with the JOY of the Lord!!
And we do have some GOOD news:
Next week we begin intensive Team Training with her SERVICE DOG!
This highly trained dog will help Emmie in many ways: opening & closing doors, turning on & off lights, picking up things, etc, etc... but probably most importantly, providing a social bridge in public when people sometimes react strangely to the medical equipment & wheelchair... and emotional support when Emmie is in the hospital or enduring painful procedures.
If everything goes well with Team Training,
we will graduate & bring her dog home on May 15th!!
We are soooooo excited!!!
Please continue to keep Emmie in your prayers:
her biggest prayer request is that she can EAT! She hasn't been able to eat or drink since she was 2 years old, but we are believing in another miracle!! We even have a friend from our church who has vowed to
FAST FRENCH FRIES
until Emmie is able to eat one with him!!!! He won't eat another french fry until she can eat one too! Her next GI appointment is scheduled for this week, and we will have another Video Swallow Study hopefully soon to see if her aspiration issues are any better...
We are BELIEVING!
Emmie on Facebook!! Join Emmie's "Fan Page" to follow her updates daily!
Click below for Emmie's Facebook page:
http://www.facebook.com/pages/Emmie-Mangione/103214916908
YARD SALE FUNDRAISER!!Donated items, in good condition, are needed
for our upcoming Yard Sale Fundraiser
planned for this summer!!
We are collecting items NOW!
Click on the "Guestbook" link above to send a message
if you'd like to help!
(All messages are viewed & approved before being posted)
April 6, 2010:
Emmie is still in quite a bit of pain from the compression fractures
in her spine, but she's being very brave!
Mom, on the other hand, is getting frustrated with Medicaid:
They are telling us that it will take a minimum of 8 weeks
approve her new body cast!
(We have her in the old one, but it is not fitting properly anymore,
and she needs the new one to ease the severe pain).
We were told that Medicaid has only one person
in charge of all the approvals for the entire state of NJ,
and that woman works only one day per week, for 4 hours!
So, we wait ...
(Thanks for praying!)
March 21, 2010:
Emmie was in a great deal of pain tonight, but she didn't want to miss Paul Baloche in concert: he is our favorite!! When we are in the hospital, I set up a CD player by her head & keep Paul Baloche playing on repeat around the clock! And at home, he's playing through the night!
And ... she got to hang out & talk with him after (check out the new pictures!!), and even got 3 new autographed CDs!! She was obviously in a lot of pain all night, but she put on a smile & enjoyed herself. Such a brave girl!
March 19, 2010:
Please pray for Emmie!!
Her back pain has returned which means new compression fractures in her spine, and she's vomiting! Her cyclic vomiting kicks in from the pain & stress. (Remember we had 19 months of this!)
I've got her back in the body cast & hooked up to monitors to keep an eye on her heart rate & blood pressures, and feeding into her small intestine instead of her stomach due to the vomiting.
Bringing her to Dupont this week: x-rays, bone density scan, bloodwork, G-J change. Was going to do the IV infusions at home this time, but Dr. Bachrach & I just realized we won't be able to check her calcium levels "stat" at home. That's a serious thing because the Pamidronate infusions can get her calcium out of whack & affect her heart.
So we're spending most of next week at Dupont for all of her procedures plus the IV infusions. She will also have to be molded into a new body cast since her present one was made smaller when she had her weight loss. We had hoped that she would enjoy a summer out of the body cast this year, but she's being a real trooper. Please pray that her pain will end soon!!!
February 26, 2010:
Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.
Please see all the "New Pictures" by clicking on the tab above!!
TGI Friday's
of Marlton, NJ is hosting a fundraiser for Emmie & family!!
Wednesday, Dec 30th, starting at 5pm.
Friday's at 970 Rte 73 North, Marlton, NJ
Details to follow... Save the date!
Saturday, Nov. 28th, was Emmie's 10TH BIRTHDAY!!!!
What a miracle! The doctors didn't expect her to live to be 2 years old
and now she has celebrated TEN birthdays!!! Praise the Lord!
She enjoyed the day at home with her family, playing with her new
High School Musical game, singing along with her brother,
and then a rare trip to the MOVIES!!! It was a GREAT day!!
And ... she got to hang out & talk with him after (check out the new pictures!!), and even got 3 new autographed CDs!! She was obviously in a lot of pain all night, but she put on a smile & enjoyed herself. Such a brave girl!
March 19, 2010:
Please pray for Emmie!!
Her back pain has returned which means new compression fractures in her spine, and she's vomiting! Her cyclic vomiting kicks in from the pain & stress. (Remember we had 19 months of this!)
I've got her back in the body cast & hooked up to monitors to keep an eye on her heart rate & blood pressures, and feeding into her small intestine instead of her stomach due to the vomiting.
Bringing her to Dupont this week: x-rays, bone density scan, bloodwork, G-J change. Was going to do the IV infusions at home this time, but Dr. Bachrach & I just realized we won't be able to check her calcium levels "stat" at home. That's a serious thing because the Pamidronate infusions can get her calcium out of whack & affect her heart.
So we're spending most of next week at Dupont for all of her procedures plus the IV infusions. She will also have to be molded into a new body cast since her present one was made smaller when she had her weight loss. We had hoped that she would enjoy a summer out of the body cast this year, but she's being a real trooper. Please pray that her pain will end soon!!!
February 26, 2010:
Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.
Please see all the "New Pictures" by clicking on the tab above!!
TGI Friday's
of Marlton, NJ is hosting a fundraiser for Emmie & family!!
Wednesday, Dec 30th, starting at 5pm.
Friday's at 970 Rte 73 North, Marlton, NJ
Details to follow... Save the date!
Saturday, Nov. 28th, was Emmie's 10TH BIRTHDAY!!!!
What a miracle! The doctors didn't expect her to live to be 2 years old
and now she has celebrated TEN birthdays!!! Praise the Lord!
She enjoyed the day at home with her family, playing with her new
High School Musical game, singing along with her brother,
and then a rare trip to the MOVIES!!! It was a GREAT day!!
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date!
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date!
Please continue to pray for Emmie ... her lung capacity is only at 28%
so this cold & flu season is rough for her ...
She has been gaining weight, however, which is GREAT news!
We've been trying to avoid the hospital as much as possible, and we are
even planning to try the next round of IV infusions at HOME in January!!
so this cold & flu season is rough for her ...
She has been gaining weight, however, which is GREAT news!
We've been trying to avoid the hospital as much as possible, and we are
even planning to try the next round of IV infusions at HOME in January!!
One more thing:
Another fun-filled event is happening THIS SATURDAY, Dec. 5th!!!
There is a Christmas Market fundraiser to benefit Emmie & family:
ALL ARE WELCOME!!! DON'T MISS THIS EVENT!!!!
There is a Christmas Market fundraiser to benefit Emmie & family:
ALL ARE WELCOME!!! DON'T MISS THIS EVENT!!!!
THE BLUE BARN REC CENTER, 1006 Tuckerton Rd, Marlton, NJ
Saturday, Dec 5th, 10am - 3pm
We have:
Approx. 50 Artists, Crafters & Vendors, Baked Goods, SANTA,
Face Painting & Balloon Art for the kids, a CHINESE AUCTION,
Food, and MUCH MORE!!!
Approx. 50 Artists, Crafters & Vendors, Baked Goods, SANTA,
Face Painting & Balloon Art for the kids, a CHINESE AUCTION,
Food, and MUCH MORE!!!
Come hungry, bring the kids, and don't forget your shopping list!!
Emmie is looking forward to seeing everyone!!!
November 28, 2009:
HAPPY BIRTHDAY, EMMIE!!!
The doctors said you wouldn't live to be 2 years old
and today you are TEN!!! Praise the Lord!!!
October, 2009:
This time of year, just a few years ago, Emmie suffered a cardiac arrest,
strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)
She was non-responsive. Doctors would tickle her eyeballs and she would not
respond. Mom was heartbroken when Emmie had no reaction to her voice.
The Neuro team at Children's Hospital said Emmie had "reached her plateau"
and would never see again & probably remain non-responsive.
Today, we PRAISE THE LORD that Emmie, just 9 years old, now shares
her testimony with total strangers (just friends she hasn't yet met) and tells them
how God healed her! Thank you, Jesus!
We are planning a CHRISTMAS MARKET fundraiser!!
Saturday, December 5, 2009
10am - 3pm
The BLUE BARN Recreation Center
1006 Tuckerton Rd, Marlton, NJ
October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a
Emmie is looking forward to seeing everyone!!!
November 28, 2009:
HAPPY BIRTHDAY, EMMIE!!!
The doctors said you wouldn't live to be 2 years old
and today you are TEN!!! Praise the Lord!!!
October, 2009:
This time of year, just a few years ago, Emmie suffered a cardiac arrest,
strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)
She was non-responsive. Doctors would tickle her eyeballs and she would not
respond. Mom was heartbroken when Emmie had no reaction to her voice.
The Neuro team at Children's Hospital said Emmie had "reached her plateau"
and would never see again & probably remain non-responsive.
Today, we PRAISE THE LORD that Emmie, just 9 years old, now shares
her testimony with total strangers (just friends she hasn't yet met) and tells them
how God healed her! Thank you, Jesus!
We are planning a CHRISTMAS MARKET fundraiser!!
Saturday, December 5, 2009
10am - 3pm
The BLUE BARN Recreation Center
1006 Tuckerton Rd, Marlton, NJ
Don't miss this one! We have several artists, crafters & vendors, as well as baked goods, a FACE PAINTER, SANTA ... and MUCH more!!!
** We still have room for more crafters, artists & vendors ... and if you can BAKE, we need you, too! (You won't necessarily need to be present that day, just do some baking for the bake sale portion of the event!)**
We also need a few volunteers to help out the day of the event.
(send a note through Emmie's Guestbook above
if you are interested in participating or helping in any way).
Sept 16, 2009:
Emmie & Mom are at A.I. Dupont Hospital for Round 4 of IV infusions.
Emmie has had a rough day so far : 7 sticks to try to get IV access!
Two and 1/2 hours and 7 IVs later, we finally have access and the
infusions have begun. We are praying for minimal side effects this time!
This round will of infusions will continue for the rest of this week.
Sept 15, 2009:
** We still have room for more crafters, artists & vendors ... and if you can BAKE, we need you, too! (You won't necessarily need to be present that day, just do some baking for the bake sale portion of the event!)**
We also need a few volunteers to help out the day of the event.
(send a note through Emmie's Guestbook above
if you are interested in participating or helping in any way).
Sept 16, 2009:
Emmie & Mom are at A.I. Dupont Hospital for Round 4 of IV infusions.
Emmie has had a rough day so far : 7 sticks to try to get IV access!
Two and 1/2 hours and 7 IVs later, we finally have access and the
infusions have begun. We are praying for minimal side effects this time!
This round will of infusions will continue for the rest of this week.
Sept 15, 2009:
Sept 15, 2009:
Sept 15, 2009:
Praise the Lord, Emmie is GAINING WEIGHT!!!
Her body is getting ready for that 8th heart surgery that will be coming up
(hopefully not TOO soon!) ...
Her body is getting ready for that 8th heart surgery that will be coming up
(hopefully not TOO soon!) ...
The rest of this week will be spent at A.I. Dupont Hospital for IV infusions
and testing. Please keep her in your prayers - these infusions are sometimes
pretty tough on her little body, added with the fact that cold & flu season has
already begun!
and testing. Please keep her in your prayers - these infusions are sometimes
pretty tough on her little body, added with the fact that cold & flu season has
already begun!
We praise the Lord for this good news of weight gain & give Him all the glory!!
Sept 9, 2009:
I put Emmie on our scale at home today & she is a whopping 46 pounds!!
She was down to 38, so this is awesome!!
Of course we need to have the doc confirm it on the scale we always use
at the office, but she definitely seems to be gaining!
Go Emmie!!!
Praise the Lord!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please keep Emmie in your prayers ... she is still only 38 pounds and very frail and lethargic. She doesn't feel like going out anymore, except to church. Lots of appointments coming up ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Donations for Emmie & her family can be made out to:
July 10, 2009:
Dec. 2, 2008 ....
Sept 9, 2009:
I put Emmie on our scale at home today & she is a whopping 46 pounds!!
She was down to 38, so this is awesome!!
Of course we need to have the doc confirm it on the scale we always use
at the office, but she definitely seems to be gaining!
Go Emmie!!!
Praise the Lord!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Please keep Emmie in your prayers ... she is still only 38 pounds and very frail and lethargic. She doesn't feel like going out anymore, except to church. Lots of appointments coming up ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Donations for Emmie & her family can be made out to:
Emmie Fund
And mailed to:
Emmie Fund
c/o TD Bank
225 Greentree Road
Marlton, NJ 08053
July 15, 2009:
Please pray for Emmie. Her virus has developed into a cough so I took her in .. doc said it sounds like pneumonia & sent us right to the hospital for stat chest xrays & bloodwork.
He was right - she has pneumonia, and it's viral, which means antibiotics won't help. So there's basically not much we can do (except PRAY!!)
I've increased her fluids in her J-tube as well as her nebulizer treatments. Her fever is still very high, and she lost that one little pound she had finally gained!
"Ah, Sovereign Lord, You have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you." - Jeremiah 32:17
Please pray in agreement with us this healing prayer:
Heavenly Father, we thank you for your Living Word. You said that your Word is Life to those who find it and medicine to all their flesh. Today, by our confession, we apply your Word to Emmie's body by giving voice to it.
You said in Psalm 139:14 that Emmie is fearfully and wonderfully made and that your works are marvelous. We declare that Emmie was created by you and she is a marvelous creation.
We speak to sickness and disease today and proclaim that according to Philippians 2:10 that they must bow down to the mighty name of the Lord Jesus Christ. Every name in Heaven, on earth, and under the earth bows its knee to Jesus’ name.
We speak to Emmie's body today and declare that we have authority over it. We command it to receive the Word of God. Matthew 8:17 proclaims that Jesus bore Emmie's sicknesses and took her infirmities.
Heavenly Father, we thank you that the same Spirit that raised Jesus from the dead dwells in Emmie and makes alive her mortal body.
We speak to Emmie's immune system and command it to line up with the Word of God.
Emmie's immune system will destroy sickness and disease in her body and perform its job; for this is what God created it to do.
We thank you Father that every cell in Emmie's body responds to your Word. Your Word permeates Emmie's body from the top of her head to the bottom of her feet. We confess that the Word of God is being made flesh in Emmie.
Psalm 103:3 declares that you Father, forgave all our iniquities and healed all our diseases. Father, that is your confession and we make it our confession also. We don’t judge by the sight of our eyes, we judge by Your Living Word. It is your Word that lives in Emmie and brings health and healing to every part of her body.
Heavenly Father, we rejoice at your promise of divine health. You said it and we believe it! Today, we declare that we will see your promise of healing manifest in Emmie's body.
Healing is Emmie's because Jesus paid the price two thousand years ago. God so loved Emmie that He sent His Son to die on the cross so that she could experience life on God’s terms. His abundant life manifesting in Emmie, making her whole – body, soul, and spirit.
In Jesus' name, Amen.
July 10, 2009:
Please pray for Emmie. She developed a fever last night of 103 ... and this morning it was up to 105! I've had it back down to 103 with Motrin & cool compresses throughout the day.
She has also started vomiting - could be her Cyclic Vomiting Syndrome kicking in. The big concern with vomiting, as always, is the fact that she aspirates - this is why she cannot eat or drink. We're hoping to avoid the hospital - it always gets worse there! I have 2 feeding tubes now piggy-backed into her stomach & her jajunem with her feeds plus extra fluids to combat what the fever burns off.
She is classified as having "no reserve" meaning she has no way to fight this ... but we know Who does! Please keep her in prayer, especially that it won't settle in her lungs, as she only has 28% lung capacity when she is doing "well"!
Her weight is way down (38 pounds at 9.5 years old) and she's been weak lately, but we are believing the Lord will fight this one for her ... as He has many times before!
Thanks for praying! God bless!
July 8, 2009:
We've been having quite a week here ... Christian has some sort of virus - started with a terrible rash he picked up at baseball camp, which was clearly not an allergic reaction - then he developed a high fever (104 +) and he's had that for 6 days now! Over the past 2 days he's added a bad cough & wheezing to his symptoms. I've brought him to the doctor 5 times in the past 7 days. They've done every test imaginable - including swine flu, which came back negative, but they've decided to put Emmie on Tamiflu for 10 days just incase. If Christian isn't better by Friday morning, we are headed to the hospital for more tests.
As for Emmie, so far she has not caught any of this, praise the Lord! I've been very careful to keep them separate and keep a mask on both of them, and sanitizing & bleaching like crazy!
We've been trying for a few months to put some weight on her to no avail, but yesterday I brought her in for a weight check (yes, that made 6 doc visits in 7 days), and she had gained ... ONE pound. That's the right direction, but we need a LOT more!! She is now 39 pounds, at 9.5 years old. Very thin,malnutrition/failure to thrive. We've now bumped her feeding tube rate up to 90 - and the highest she had ever had before this increase trial was 55! So far she is tolerating the increased feeds!
We have appointments coming up with GI and Cardio to see what's up. We've already started discussions about her next heart surgery - UGH! That's something we hate to even think about but know it's coming. Her surgeon is now in Florida, so we may have to take a trip down south for that - still looking into whether or not he still has privileges at CHOP.
As for the compression fractures in her spine, it seems that the Pamidronate IV infusions are helping to build up the bone more - but she has a long way to go. Looks like at least another year in the body cast (it's already been 13 months!) She is such a trooper! I honestly don't know how she puts up with all of this!
Which leads me to the next issue ... she has been showing signs of some "possible psychological problems" (DiGeorge Syndrome has many psychological problems associated with it, including schizophrenia and bipolar disorder)... I rebuke this in the name of Jesus! Her "issues" are more self-inflicting, and still a major concern. Dr Wechsler thinks this behavior could be due to stress, as she is now at a cognitive level where she sees that she can't do many things that other kids can. I think he may be right as far as her feeling some frustration. We are now looking for a good therapist/psychologist - possibly a play therapist or art therapist.
She also "failed" her vision test while wearing those very thick glasses of hers, so we are headed to the Opthamologist on Friday. Dr said her eyes are very bad. She certainly keeps me hopping!
Thank you for always keeping her & the rest of us in your prayers! We are blessed!
June 26, 2009:
Emmie just found the 3 nouns in this sentence:
"The rabbit ran to the cafeteria and ate a salad."
... Pretty amazing for a kid with severe, permanent brain damage resulting from a cardiac arrest, huh?!
Praise the Lord for homeschooling!!
June 5, 2009:
We're still at the hospital, just starting Day 3 of Round 3 of her Pamidronate Infusions ...
We've ended up staying here for about 8 hours each day (for what should be a 3-hour infusion), because they need to run her infusions slowly due to her heart issues.
Dr. Bachrach, the metabolic doctor, told me yesterday that Emmie is the only Pamidronate infusions patient they have who has bone density issues caused by DiGeorge Syndrome. There are many precautions they need to take because she is so medically fragile, including getting calcium levels before & after the infusions, as the treatments can get her calcium out of whack, which affects her heart. Emmie asked me why we are always the last ones here every night, and her nurse said it's because she's special!
Before yesterday's infusion started we went for an x-ray of her spine. This showed Pamidronate lines, which means the infusions are working, but it also showed that she still has compression fractures in her spine. This means most likely another year or more in the body cast! As of next week, she will be in it for a year already! Another year ... ugh. We are waiting to hear from Dr. Gabos, Emmie's Orthopedic Surgeon here at Dupont, about this. In the meantime, someone from the cast room just came & got her body cast from me, so he can adjust it to her now much thinner body.
We also got bloodwork results, which show no explanation of her weight loss. Next we will see her GI docs and Dr. Hanna, our awesome Cardiologist. Please pray that the weight loss is not heart-related. All signs now seem to point to her heart being overworked & burning off all her calories, but we're hoping to hold off longer before her next open-heart surgery.
In between all of Emmie's appointments & keeping her feeds & meds going around the clock, we've been busy with soccer & baseball .... Erica's soccer team is now in 1st place & she's been doing great, scoring lots of goals! Christian's baseball team begins play-offs tomorrow morning. He is his team's starting pitcher & his coaches say he WILL play professional baseball some day - he is an amazing pitcher and he really loves it! Emmie really enjoys cheering on her siblings' teams, and I'm very proud of them all!
One last thing ... yesterday Dr. Bachrach was talking about how much the Pamidronate infusions are helping ... and she told him that God healed her back! How sweet! (And true) ...
Thanks so much for keeping her in your prayers! God bless!
June 3, 2009:
Emmie's weight loss was just confirmed by Dr Wechsler ...
she has lost another 4 pounds since her last visit!
Also, her diastolic murmur is louder.
The weight loss could be from her heart overworking (she has
also been tiring easily), or it could be some strange thing with
her kidneys or her enzymes not assimilating food properly ...
Lots of bloodwork being done tomorrow & we will see GI &
Cardiologist very soon.
She also starts Round 3 of her Pamidronate infusions tomorrow.
Thanks for praying ... I know you are! God bless you all!
** Note the new picture I just posted from today**
June 1, 2009 ...
We will be heading to A.I. Dupont Hospital this week for Round 3 of her IV Infusions of Pamidronate.
Please keep her in your prayers - she is still losing weight, down to 38 pounds (at 9.5 years old), and is now malnourished, failure to thrive.
Of course the fear is that her heart is working extra hard and her next open heart surgery will have to be sooner than later. The normal routine is to hold off as long as possible. She is also getting weaker and tiring easily. She can't walk in her walker for more than a couple of feet before having to stop & rest. We're now having to bring the big wheelchair everywhere again so she doesn't have to walk. I'll have to look into a way to get a ramp for the smaller van we now have, as the wheelchair weighs over 300 pounds & the girls & I really struggle lifting it in & out!
Please keep Emmie in your prayers. She is still just as sweet as can be & full of joy, despite - or maybe because of - all she endures.
I will send an update after this round of infusions. She got through the last one with only a slight fever, and we pray things will go as well this time, although the strength of Pamidronate is being increased & the doc said to expect more side effects.
Thanks for always lifting us up in prayer! God's blessings to you all.
May 2, 2009 :
I did a weight check on Emmie today & it seems she has LOST more weight! She is now
down to just 39 pounds. Being strictly tube-fed, it doesn't make sense.
The concern now is if her heart is working extra hard & burning off calories.
Once all this crazy sickness passes and we can safely have her at the hospital,
she will be seeing her Cardiologist.
Please keep her in prayer. She is very much underweight.
Other than that, she seems to be stable, praise the Lord!
April 29, 2009 :
Emmie has been stable, and with this great weather, she has been able to cheer on
her brother Christian in baseball, and sister Erica in soccer!
However, her weight is still a big concern.
Although she is now transitioned completely to feeds directly into her stomach,
she has only gained back 1 pound.
We will return for a weight check in a couple of weeks and discuss what to do next ...
Thank you for keeping us in your prayers!
We still need a financial miracle, and we're trusting God that we won't lose our home !!!
March 19, 2009 :
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I am very happy to report that Emmie is still stable! We are still working on getting her weight up - she had lost 25% of her body weight in about 7 weeks.
I have gradually transitioned her feeds over to "G" entirely. We were feeding her into her small intestine ("J") for the past 16 months due to all the vomiting, but now that she is stable I have gradually changed them over to her stomach. This should help her absorb much better and hopefully get some weight back on her.
Now that we have her stable, I really believe that the Cyclic Vomiting kicked in from her infection she got in October of 2007, when this all began ... her weak bones fractured from all the violent vomiting, the pain from the long mis-diagnosed fractures caused the Cyclic Vomiting to continue, and finally the Pamidronate IV infusions that strengthen her bones & heal the fractures took the pain away, which in turn fixed everything.
I had this feeling in my gut all along & nobody would listen to me or our Pediatrician until we went to A.I. Dupont (Nemours) in Delaware. I am very frustrated that she had to suffer for so long with no one listening to me to try & help her, but I'm just thrilled that she is no longer suffering!
When I look back on the past 16+ months, I am amazed at the way the Lord held us up! I can honestly say that my faith never once faltered. He held me up and kept me strong through it all: Emmie being so ill, my husband leaving us, losing our health insurance, our old dog dying, and the present danger we still have of losing our home ... but I knew all along, and I still know, that He will provide. He always has, and He always will! Emmie starts Round 3 of the Pamidronate infusions soon ...
I also want to share something that I have been working on ... this is an amazing site where people are helping people in huge ways ... you may have seen it this past week on ABC World News with Charles Gibson. We (Wish Upon a Hero) were named Persons of the Week! They were actually scheduled to come here to our house and interview me & the kids as well, but they ran long with the rest of the story and cut our portion out ... Also made the front page of the Courier Post Tuesday!
The site consists of regular people who can either post "wishes" of their needs, or they can "grant wishes" for other people ... or both! Wishes range from simple birthday cards to prayers to refrigerators or surgery or wheelchairs! I encourage you to log onto this site and check it out! There is also a tab at the top for "Foundation" .. I am also very involved with the foundation. I have started a program called "Wish Warehouse" in which people can donate any unwanted items, clothes, etc, and I send those things to people in need, on behalf of Wish Warehouse & the Wish Upon a Hero Foundation. It's a wonderful thing and I'm thrilled to be a part of it! The foundation helped us and I can also help others .... Isn't that what life is all about anyway?
"Give, and you will receive. Your gift will return to you in full—pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back." - Luke 6:38
Here is the site : www.WishUponaHero.com
Thanks for letting me share this - have fun with it!!!
And .. PRAISE THE LORD!!!
"I sought the Lord and He answered me, and delivered me from all my fears." - Psalm 34:4
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March 1, 2009 :
Praise the Lord, Emmie been STABLE for several weeks now!! It seems the Pamidronate infusions have really helped with her pain, which seems to have been the cause of ALL the other symptoms. With her cyclic vomiting syndrome, any stress can trigger a cycle. The mystery was why did the cycle never end ... most likely because her PAIN didn't! The Pamidronate infusions work to strengthen the bones and have actually been proven to have kids up & walking who never did before!
Emmie is still in the body cast, and will remain in it for maybe another year. Her bones still have a long way to go, and there is risk of more fractures. The next round of infusions will be in a few weeks. She tolerated this last round pretty well - much better than round 1.
She also had a significant weight loss which has everyone concerned. She lost over 20% of her body weight between November and January. We have increased her feeds, but most likely the problem is that she is not absorbing well, since we feed into her Jajunem (small intestine) instead of her stomach.
We had a problem with that J-tube this past week and ended up in the hospital. She ended up off her feeds for several hours, which is life threatening for her. After reaching the Director of Radiology, things finally got taken care of ...
Between the issues of the J-tube (which has to be surgically replaced if any problem occurs, unlike the G-tube which I can change myself), as well as the weight loss, I decided to try to start her feeds in her G (stomach) again, and the Peds agreed with me. So I've started, at a very low rate, increasing very slowly. It will take about 40 days to get her up to her full rate, if she tolerates the feeds. So for now, I have 2 feeding pumps & tubing sets running. A little more complicated, particularly when one alarms, but no biggie!
Other than these comparatively "small" issues, she has been doing well! She has been getting around the house with her little walker, lugging her feeding pumps along with her, and back to coloring and playing almost like she used to!
Some unfortunate news, the Emmie's Heroes program had to be shut down; we learned that a non-profit, 501(c)3 organization cannot benefit an individual or a family. This was pretty devastating, as the foundation had high hopes for helping us, but for now, I'm selling my art work, and the girls are babysitting for neighbors, all trying to help out. We know the Lord will provide!
Thank you for keeping Emmie (and the rest of us) in your prayers. Please continue to pray for finances, as I am still caring for her 24/7 with her meds & feeds.
And .... PRAISE THE LORD that she now says "My back DOESN'T HURT !!!!!" (And mine hurts a little less, too, with not lifting her quite as much!) Thank you, Jesus!
February 4, 2009 :
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Sitting here in the hospital, Day 3 of Round 2 of Emmie's IV infusions ...
She has taken this round pretty well so far. Last round, she had the side effects on Day 3, so we will watch her closely.
The docs now seem to think that these infusions are what is helping her ... the compression fractures in her spine cause a lot of pain and probably triggered all of her other symptoms. The cyclic vomiting syndrome is triggered by stress, and her already sick heart has also been working overtime, so it does make sense.
So, we will continue with this round, and keep praying that she will improve daily. The Genetic doc here just told me that he has seen patients with other bone issues feel almost instant relief from the fractures with these infusions. So we are hoping that within a few months Emmie will be able to be without the body cast!
In the meantime, we're just keeping her happy & comfy and protecting her from flu season as much as possible.
Thank you for praying for us! God bless.
I love you, O Lord, my strength. The Lord is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge.-Psalm 18:1-2
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February 2, 2009 :
We begin Round 2 of the aggressive IV infusions today at Dupont in Delaware. Round 1 was a little rough on Emmie, and she is much lighter and weaker now, so please keep her in your prayers as you think about her. These infusions are similar to, and cause the same side effects as, chemo.
Please also pray for safe travel for us, as I decided not to stay at the Ronald McDonald House, but travel back & forth to home each night. It's just more comfortable for all the kids, and it's only just over an hour away. Just makes for a long, tiring week.
Thank you for caring & praying for us. We are blessed!
"No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him." - 1 Corinthians 2:9
Praise the Lord - the enemy can not function in the midst of praise!!
January 28, 2009 :
Emmie had a check-up with the Pediatrician today ...
He is very pleased that the Pamidronate infusions seem to be helping her pain from the compression fractures in her spine and he got to see her happy personality, but we now have new issues ...
Her weight is now only 19 kilos ... this is less than she weighed at AGE 5 (she is 9 now), and she has lost 11 POUNDS in less than 2 months!! We're thinking it may be because we're feeding into her jajunem (small intestine) instead of into her stomach, due to all the vomiting she has had, and she may not be absorbing enough. We have bumped up her rate of the J-tube feedings and will do a weight check in 6 weeks. She needs to gain at least 15% of her body weight! We need to do this carefully, as fluid overload can cause her to go into heart failure again ...
She also had her ears & eyes checked, and she is only seeing 20/70 in each eye, WITH her very strong glasses ... we need to see the Pediatric Opthamologist again soon.
The staff, as always, were all very sweet (they LOVE Emmie) and the nurse who did the testing climbed up on the desk & held the machine on her lap because Emmie's wheelchair didn't reach ... very cute! (I've posted pics !)
So, our goals now are :
1) GI doc & Nutritionist at Dupont
2) Opthamologist
3) Next round of IV infusions this coming week
4) Cardiologist Dr. Hanna to see how her heart has been holding up through this past 15 months of being so sick
5) To GAIN WEIGHT!!!
We're praising the Lord that she is feeling almost back to her sweet, happy self, and we know He will take care of all the other details!
Please continue to pray for our finances, as she continues to require my care 24/7 ...
"I sought the Lord, and he answered me; He delivered me from all my fears." - Psalm 34:4
January 22, 2009 ...
Well, (I'm also afraid to say it) BUT ... it seems that, after over 15 months of high heart rates and blood pressures, severe pain and near constant vomiting, Emmie is turning a corner !!!! I have been able to decrease her Clonidine dose to a small fraction of the high dose she had been up to! The docs have no clue what has helped - possibly the IV infusion treatments (we have round 2 coming up in February) - but of course we're giving God the glory!!!!
She has been stable enough at night that I have moved her into her own room!!! I painted it with a fairy tale princess theme, with a pink castle mural around the entire room, and accents of frog princes and hearts ... she LOVES it!!
Now that she is becoming more stable with the fractures and pain, Dr Hanna has mentioned wanting to do another cardiac cath and see how soon she will need her next heart surgery ... grr. I wish we could just leave her alone, but we knew this was coming, and we've been putting it off while trying to get her stable ...
Amidst all the latest, and trying to keep her meds juggled and school, we received some bad news recently ... the non-profit foundation that had been trying to help us financially has had to shut down the Emmie's Heroes program. It is in violation of IRS law for a 501(c)3 non-profit organization to benefit an individual or family. This is pretty devastating to us, and I ask that you please pray for us. Even with Emmie feeling better, she still requires my constant care, continuous tube feedings around the clock, and meds throughout the day & night, and cannot be in a classroom setting due to being severely immuno-compromised. This makes it impossible for me to work outside our home. I'm doing all I can trying to sell my art work, and I've also started a line of dog collars & leashes, and the twins are babysitting for neighbors to help out, but this is nowhere near what we need to survive on. We really need a miracle.
Thank you all for your love and support, and especially your prayers! I know that God is in control, and He will never leave us or forsake us, and He will provide all we need. He is SO good! And I give Him the GLORY for Emmie having some better days lately! I know He is going to heal her completely!
"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2-3
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January 7, 2009 ...
Just wanted to update everyone ...
It has now been over 15 months since Emmie has been suffering terribly with the mysterious symptoms of dangerously high heart rates & blood pressures, severe pain, and vomiting.
Her pain is, and always has been, in her lower back, right at the point of one of her compression fractures in her spine. The Orthopedic Surgeon doesn't believe the pain could still be from the fractures, since she has been in a body cast for 7 months. Our Pediatrician and I are still thinking it could be ....
Well, over the past few weeks I have been able to decrease Emmie's Clonidine dose, as well as giving it less frequently. She does, however still have the severe "attacks" of symptoms, which come on suddenly and hit her very hard, but recently the Clonidine has been helping to stop them pretty quicky once they do hit. I'm wondering if possibly the aggressive IV infusion treatments we started back in October are starting to help ... we have the next round in February.
I still speak with our amazing Cardiologist, Brian Hanna, often of course, and he has told me he is hoping the symptoms continue to decrease, because we are now looking at another MAJOR open heart surgery in our (near) future. He wants to do a cardiac cath soon to see how she's doing, but she's still not stable enough for a cath. It seems almost funny that her heart issues have sort of taken a back burner to all of this - but we also worry how her weak heart has been holding up under all this stress. Only a cardiac cath will really tell.
Please continue to lift her up in prayer. She is, as always, a sweet, joyful blessing through all of this. Infact, every time I ask her, "Emmie, how are you feeling?" she responds with "How are YOU feeling, Mommy?" I love her so much! I thank the Lord for giving me the privilege of caring for these amazing children!
Please also pray for our finances. I believe the Lord will provide, and He has been - in amazing ways - as I care for Emmie around the clock. I know this is my "job" and my ministry right now, and I'm trusting in Him.
Thank you so much for your love & prayers! They mean more to us than you will ever know! May God bless each one of you!
"May your unfailing love rest upon us, O Lord, even as we put our hope in you."
- Psalm 33:22
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January 1, 2009 ...
Emmie has been having some very good days, praise the Lord! Christmas day we were able to skip 2 doses of her meds! She went 14 hours feeling great!! Once the symptoms hit, they hit hard & fast, so I gave her the full Clonidine dose, and within 15 minutes she was feeling great again!
I keep thinking these symptoms should tell the docs what is going on, but they still can't figure it out. I've been doing a lot of research and looking for new doctors & facilities who may have answers. For now, I am going to delay the hospital stay to get the Clonidine patch, until we know more. I don't like the idea of limiting our options that much when we don't yet know what's even wrong.
I'd like to share the daily devotional I received today, and wish all of you a happy, healthy new year ... with love from Kim, Kira, Elena, Erica, Christian, and of course, Emmie .....
Matthew 11:28
[Jesus said,] "Come to me, all you who are weary and burdened, and I will give you rest."
Thoughts on today's verse
At the end of the year, it sure is nice to be invited to rest in Jesus. So before we begin a new year, let's pause and place our hopes, our future, our dreams, and especially our burdens down at his feet and let him give us rest.
Prayer:
Teach me, O God, to learn to rest in your grace and providence more and to worry less. I want to surrender my burdens to Jesus and let him teach me his way and how to find his rest. Sometimes I am so tired and weary I don't think I can continue, so please, dear Father, let me find rest in Jesus. Through whom I offer this prayer. Amen.
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December 25, 2008 ....
Emmie & family would like to wish you all a blessed Christmas!
Remember what this day is all about...
He was born, to die, so that WE may have life!
Thank you Jesus!
Emmie had a GREAT day ... check out "NEW PICTURES" to share in our day!
Dec. 15, 2008 ...
Emmie's unexplained symptoms have been going on for 14 1/2 months now.
I've been emailing back & forth with the Diagnostician at Dupont for the past 2 weeks. He originally said he wanted to admit her and observe her for several days, even with video monitoring. I thought this was a great idea - we haven't had anyone really look at her for 11 months, when she was discharged from CHOP after a 3-month stay with no answers.
The Diagnostician decided instead to change her Clonidine dose over to a patch form. The Clonidine does seem to help her symptoms (usually), and we are now at the maximum dose. So the patch seems like a good way to keep a steady amount in her system.
However, the Clonidine is not fixing her - it's just controlling symptoms, and eventually it will also get to the maximum dose and there will be nothing more we can do. She would need to be admitted for this, as it could crash her blood pressure as it has done in the past.
The plan was to admit her today. Ten days before Christmas. I reminded him that we spent last Thanksgiving, Christmas, her birthday, and New Year in the hospital. We decided to hold off until after Jan 1st.
Then I asked him which floor he planned to admit her to. I assumed the cardiac floor, as the reason she needs to be admitted for this is to monitor her cardiac function. He said he planned to admit her to a general peds floor ... during cold & flu season.
I politely replied and said we can't have her on a general peds floor - especially during cold & flu season. In the past she has been admitted for minor things and ended up septic, or with a pH of less than 7, congestive heart failure, kidney & liver failure, and even coded from infections she has picked up in the hospital!
Apparently he did not respect my concerns, and he has now cancelled the entire plan!!! He told me perhaps Dr Hanna (our Cardiologist at CHOP) would be better to handle this, as he knows her better and I have a good relationship with him.
Dr Wechsler, our wonderful pediatrician, called me this morning and we had a good talk. He said that these doctors are not giving me the type of contact that we need. And they need to understand that Emmie is extremely fragile and I'm not trying to be difficult, I'm simply doing my job protecting my daughter. He was going to contact Dr Hanna and try to get us some more help.
Dr Wechsler and I both believe that her problem could be neuro pain, related to the compression fractures in her spine. The place where she has the pain is the location of one of the fractures. It could be pressing on nerve, which can be 100% fixed with surgery! She needs a myelogram to diagnose this, but we can't find a doctor who will do one!! Very frustrating.
Please continue to pray for her. She has some very bad days - but she also has good ones and has been doing a lot of drawing & painting! I've started making greeting cards of her art work!! She's very proud to be an artist like Mommy!
Please pray for the Lord to soften the hearts of all the doctors involved, and even to lead us to those new doctors who may have some answers. We know that He will ultimately heal her, whether he uses doctors or not.
Please also pray for the Lord to multiply my sleep so I can function and homeschool well, and be a good mommy. I'm still getting up every 2 hours for her meds. Somehow the Lord is sustaining me and keeping me strong & feeling rested most of the time. He is so amazing and I give Him all the glory for each day we have with Emmie and the peace that is abounding in our home!
Thank you all for your love and support, and for lifting us up in prayer! We do feel it!
"We are hunted down but God never abandons us. We get knocked down, but we get up again and keep going. Through suffering, these bodies of ours constantly share in the death of Jesus, so that the life of Jesus may also be seen in our bodies". - 2 Corinthians 4:9-10
"He alone is my refuge, my place of safety; He is my God, and I am trusting in Him." - Psalm 91:2
Dec. 2, 2008 ....
Well, we had the renal scan today. She needed an IV for this, because they inject a radioactive isotope into the kidney. Several sticks to get an IV (as usual) and the IV team gave up, but someone from transport came in & got a line. So we started the test, one hour behind schedule. The nurses were all very sweet and so was the doctor who viewed the test as it went along. One hour into the test, the doctor told me everything looks normal, so they won't even be doing the lasix part of the test.
She probably wasn't prepared for me to start crying, but I couldn't help it. This was the last thing any of the docs could think of to try, and even though I knew it was a long shot, I was hoping this was it. All the docs told me not to get my hopes up, but they also told me that if it wasn't this, then it has to be a very rare variant of cyclic vomiting, of which there is nothing that can be done medically.
Dr Hanna, our Cardiologist from CHOP, has always said all along that he's amazed how her heart has been holding up with having to work so hard these past 14 months, but now not sure how much more her body can take. Everyone is worried.
And I still sit here in complete frustration, of all the things that can be done medically, and yet they cannot figure out what is even wrong with Emmie, much less fix her! I don't believe in my heart that this is only a cyclic vomiting variant, and neither does Dr Hanna, because PAIN is the trigger.
It's so aggravating that they cannot find the source of this incredible pain she is suffering with. She can point out precisely where the spot is that hurts, same place, every time, and yet they can't find it. Her life now consists of almost constant symptoms: first the hear rate and blood pressure shoot up, then the pain starts, and then the vomiting. Every time, with a little relief in between hours of suffering. Almost all day and night. She is usually so weary from it that I need to be there holding her head up for her. Her quality of life is very poor.
On the drive home from Dupont today, I was crying to the Lord. I don't ask Him why. I know He has His reasons, and honestly I do see some of them. I see what a testimony she is and a witness to many - some who don't even know Him. He is keeping her strong, and giving her joy, despite her suffering. I do, however ask Him how much longer now. It's very hard to see her suffer and just do my best to comfort her, not being able to fix it. That is my job, to fix it; I'm her mommy! I feel so helpless sitting at her bedside as she looks into my eyes as if she's begging for me to make it stop.
So, I got home tonight and turned back to my devotional about suffering, and how sometimes God's purpose isn't to heal. Maybe He is waiting to see that our faith is in HIM and only Him.
So I sit here, completely at His mercy, praying His will, praying that I am seeing things as I need to, and trusting as I need to, and showing this example to Emmie and the other children. I lay Emmie before Him. I am not worthy to ask anything of Him, and yet He listens, and I know He is answering. He is so good, all the time, and He has been so good to us.
Please continue to pray for a miracle healing for Emmie. God is going to do something amazing. Also, please, pray for me. I don't usually ask for prayer for me, but this is very hard. I need to be strong for my kids and show them what FAITH is.
Several months ago, Pastor John Megaw said something during a sermon that he may not even remember saying, but it struck me so deeply that I wrote it in permanent marker on Emmie's pulse ox monitor : IT TAKES FAITH TO WALK THROUGH A MIRACLE. Please pray along with me, that we have that faith to take this long, hard walk, and see the miracle at the end, and give Him the glory!
"For we walk by faith, not by sight." - 2 Corinthians 5:7
Nov 27, 2008 ... Thanksgiving ...
Emmie and all of us want to wish you all a very happy, blessed Thanksgiving!
We are incredibly thankful for all of you, who care and pray for us, and we have prayed for each of you today, that the Lord will bless you and draw you closer to Him!
I have added some new pictures this morning, from her NINTH birthday that we celebrated yesterday.
The Lord gave her a few good hours and she really got to enjoy herself for a bit!
Click "NEW PICTURES" above ...
Happy Thanksgiving, and GOD BLESS each of you!!!
Love, Kim, Kira, Elena, Erica, Christian & Emmie Y
Nov. 24, 2008
Emmie is pretty bad these days. Not getting much relief at all. We saw her orthopedist last week and he also believed something else is going on that's causing her intense pain and vomiting. He doesn't think it's from the spine fractures at this point. Most kids with compression fractures in the spine are in the body cast for a week & back to normal.
I finally heard back from the Pediatric Diagnostician, and he has scheduled a MAG scan "Lasix Renal Scan" for next Tuesday. This is to look for a very rare condition in which there is an intermittent obstruction in the urinary tract. It causes severe back pain followed by vomiting, with cardiac symptoms as well (her high heart rates & blood pressures).
I was really getting excited about this possibility because it was (once again) something that makes sense, and it can be treated with surgery: either removal of part of the urinary tract, or removal of the kidney itself. But I just got an email from our doc who said he looked at about 200 references this weekend and "Do not get your hopes up." He's doubtful this is it.
I'm trying not to be discouraged, but she has been suffering terribly for 14 months now. This test is what they think is the last attempt at a long shot. If it's negative they feel that this is stemming from her brain damage and there is nothing that can be done ... medically. No one is sure how much more her body - particularly her heart - can take.
With all this said, I have to add that we KNOW God is in control. And we KNOW His plan is for healing. Please agree with us in prayer that He will heal her completely. Not only from this intense pain and vomiting, but her sick and weak heart will be made like new, and her muscles will become stronger and not hypotonic, and her bones will thicken and strengthen, and she will be able to eat and drink again! Because God does things BIG!!!! In Jesus' name!
God bless you, and Happy Thanksgiving! (and Happy Emmie's NINTH birthday Friday!!)
Praise the Lord.
Emmie has had a few good hours over the past several days and was able to make some paper leaves & turkeys with her big brother Christian!! They created our first "Thanksgiving Tree" and with our help Emmie wrote what she is thankful for: "Mommy, family, brother, sisters, and doll house" ... What a blessing she is!!
She continues to have severe pain and vomiting. The doctors are almost convinced this is from her brain damage resulting from her cardiac arrest, but they are still exploring other explanations. If it's her brain, they aren't giving her much hope medically.
BUT, we know Jesus the Great Physician, and we claim her healing in His name!!!
Nov 8, 2008:
Emmie has had a very bad 24 hours. I have not been able to get her pain, vomiting & heart rates under control since last night. She was up most of the night, so sick, and all day today. Her normal meds are not working, and the rescue Valium only gave her one hour's rest.
Please pray for healing and REST for this precious little sweetheart! She is suffering so.
The Neuro Surgeon we saw yesterday is looking into a procedure that's only been performed on adults, and trying to see if he can find someone willing to "try" it on Emmie ... this involves injecting a cement-like substance directly into her spine, to try & relieve some of the pressure from all the fractures. This doctor also unfortunately agrees with the Diagnostician who feels the other symptoms are caused by something in her brain. They don't give her much hope medically. Of course we know The Great Physician, Jesus, and we are still believing in a MIRACLE healing!
"We are hunted down but God never abandons us. We get knocked down, but we get up again and keep going. Through suffering, these bodies of ours constantly share in the death of Jesus, so that the life of Jesus may also be seen in our bodies". - 2 Corinthians 4:9-10
NOV 6, 2008:
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Today we saw Dr. Jeffrey Malatak, Pediatric Diagnostician and the "Dr. House" of Dupont. He spent a long while just listening to me tell of Emmie's medical history. I had spent a couple days compiling all of her testing, medications that failed, and different doctor opinions from the last 13 months, into several pages of notes. I also brought with me 3 giant boxes of her medical records, as well as CDs of her CT scans, MRIs, and X-rays.
When I finished sharing it with him, he said he thinks he knows what's wrong with Emmie and it's not good news. He thinks she has some sort of variant of cyclic vomiting syndrome (remember that diagnosis from last year that they had ruled out?) Well apparently there is a non-migraine variant of it, and it is a doozy. He has one patient who has had no relief (like Emmie) since he was 8 ... he is now 14! Six years. And we thought 13 months was bad.
There seems to be nothing they can do for this. And in Emmie's case, there is no way her heart can handle much more of it. Her heart rates and blood pressures get dangerously high and will cause another cardiac arrest. (Sorry for repeating that to those of you who have heard it before, just trying to explain the big picture).
So, he is going to meet with his team, as well as the GI doc we saw last week who suggested surgery, (he thinks that's a bad idea and I had the feeling it was too), and he will contact me in about a week. We may try the patch version of Clonidine, which may help for a little while longer, but it's only temporary. He said he was very sorry that he didn't have better news.
Although this is pretty negative, I'm rebuking it, and believing the report of the Lord, which says that Emmie will be healed. This diagnosis is NOT God's plan for her. Please keep our family in prayer. Even though we know God is in control, this is very hard.
"He who dwells in the secret place of the Most High shall abide under the shadow of the Almighty. I will say of the LORD, 'He is my refuge and my fortress; my God, in Him I will trust.' Surely He shall deliver you from the snare of the fowler and from the perilous pestilence. He shall cover you with His feathers, and under His wings you shall take refuge; His truth shall be your shield and buckler. You shall not be afraid of the terror by night, nor of the arrow that flies by day, nor of the pestilence that walks in darkness, nor of the destruction that lays waste at noonday.
A thousand may fall at your side, and ten thousand at your right hand; but it shall not come near you. Only with your eyes shall you look, and see the reward of the wicked. Because you have made the LORD, who is my refuge, even the Most High, your dwelling place, no evil shall befall you, nor shall any plague come near your dwelling; for He shall give His angels charge over you,
To keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone. You shall tread upon the lion and the cobra, the young lion and the serpent you shall trample underfoot.
'Because he has set his love upon Me, therefore I will deliver him;I will set him on high, because he has known My name. He shall call upon Me, and I will answer him; I will be with him in trouble; I will deliver him and honor him. With long life I will satisfy him, and show him My salvation.'" - Psalm 91
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OCT 31, 2008:
Emmie's fever broke, praise the Lord! It seems that it was a side effect from the treatments. Now she is back to "our new normal" with a lot of pain and vomiting. We see the Neuro Surgeon and the Diagnostician from Specialty Surgery next week.
On Wednesday after the last infusion, we saw the GI doc, who feels that Emmie needs another GI surgery. She is discussing her with the surgeons and will contact me soon.
Dr. Bachrach, the metabolism doc, called me yesterday to see how Emmie is doing. He's a wonderful person; very sweet and has a lot of compassion toward Emmie. He also told me the results of her latest bone density scan, and it looks like her bones are pretty bad. We need to treat her as "fragile"; her bones break very easily.
So, the next step is to see the two docs next week, and probably get a CT Myleogram soon, to see if some of the compression fractures in her spine are compressing on nerves, causing the extreme pain and vomiting. We're still worried about her heart with all of this, since her heart rates & blood pressures are getting dangerously high, and could cause another cardiac arrest to her already sick & weak heart.
Thank you for your continued prayers!
I came across a devotional from a few months back, and I think it's still very relevant, so I'd like to share it....
God is in charge
We may encounter situations where God does not intend to immediately heal someone. This is not, obviously, because He lacks the power to do it, or because He lacks the will to bless that person. It's precisely because of His commitment to people's blessing that He will occassionally allow an ailment for a specific purpose because He wants to give that person a fresh revelation of His character that, at that moment, is more important than their healing.
Paul experienced this very dynamic. The affliction itself it not clear in Scripture, but his desire to be free of it is. Nevertheless, Jesus denied his request in order to give him a whole new experience of the surpassing grace of God that enables God's kids to endure suffering from a place of sufficient provision.
This is my inheritance, too, God - the experience of grace to endure suffering when it's not Your purpose to Heal. You are always good!
"A thorn in the flesh was given to me, a messenger of Satan to torment me so I would not exalt myself. Concerning this, I pleaded with the Lord three times to take it away from me. But He said to me, 'My grace is sufficient for you'." - 2 Corinthians 12:7-9
... I actually struggled with this a bit, because this is a child who is suffering. Why should she have to learn about God's grace - in this way - at such a young age?
But then I realized, she already has! She is full of God's grace! I keep asking how is she tolerating all of this... and how much more can she endure... but she is enduring all this pain, and has been suffering for 13 months now, and yet she still has HOPE and she still loves the Lord!
It's amazing what we can learn from a little child. Maybe the lesson is for all of us, after all. We need to just TRUST and have that joy and hope that Emmie does.
"I tell you the truth, anyone who will not receive the kingdom of God like a little child will never enter it." - Mark 10:15
OCT 29, 2008 :
We're home ... The treatment side effects are giving her a rough time ... she has a high fever tonight - monitoring her closely. Praying this is only side effects & her brain can regulate the temp. She got through the 3 days of infusions, and we're scheduled for the next round in February. The hope of the docs is that these infusion treatments will strengthen her bones and eventually prevent more fractures.....
Today is our 3rd day of this round of infusions. Emmie has been tolerating the treatments ok, but this morning she has a fever! This is of course serious for her. Also, her calcium is low. This can also be serious concerning her heart.
The doctor decided to continue with the infusions after all, at a lower dose today. So far it's about 10:30, and our 9am infusion hasn' t started yet. We're scheduled to see one of the GI docs here after the infusion, so this is going to be another very long day.
No results on the brain MRI yet - only preliminary telling what we already knew: her cerebellem is not growing properly and part of it has "died". Waiting to see if there is any other explanation for her symptoms for these past 13 months.
She also had another bone density scan yesterday. The doctor & I discussed the possibility that Emmie may have O.I. (Osteogenesis Imperfecta, AKA "Brittle Bone Disease"). This diagnosis would not change the present treatments, but it would explain more of the bone issues. Not exactly a diagnosis we would like, however.
Thanks for lifting her & the rest of us in prayer. The support of our friends is very much appreciated!
"My comfort in my suffering is this: Your promise preserves my life." - Psalm 19:50
"Bless the Lord, O my soul, and all that is within me, bless His holy name."
- Psalm 103:1
OCTOBER 27, 2008:
We spent the day at Dupont today ... Emmie had her first round of treatments and she's feeling pretty bad tonight. The side effects are pretty severe, so I'm monitoring her closely.
She will keep the IV here at home for these 3 days as long as it doesn't infiltrate. I'm praying it survives, because she is an almost impossible stick with all the cut downs and everything she's had with her heart surgeries. One of her last IVs was in her jugular!
The other kids were awesome today - Christian found a Clue game and we all learned it together. We plan to play around Emmie's bedside again tomorrow.
So, tonight we are home and will head back in the morning when she will have another bone density scan and her 2nd infusion treatment. Please pray she starts to tolerate these treatments better and that we find ANSWERS and a PLAN!!
Of course, if God decides to use the docs to help bring her healing, we will still give HIM the glory!!
"But he was pierced for our transgressions, He was crushed for our iniquities; The punishment that brought us peace was upon him, And by his wounds we are healed." - Isaiah 53:5
OCTOBER 25, 2008:
A picture paints a thousand words.
This is how Emmie's feeling today ...
Her pain is so bad today. Please keep praying!
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OCTOBER 24, 2008:
What a night ....
Took us over an hour to travel to Dupont with all the traffic tonight .... we arrived only to find that they were running over an hour behind.
When they finally called us, we headed down to the basement (very creepy and empty at night incase anyone was wondering) ... the woman in MRI asked me if Emmie has had any surgeries in which they put in stents, coils, conduits, etc ... I said yes, but all are compatible with MRI and she has had a dozen MRIs since. She said she needed something in writing that shows exactly what hardware she has, who the manufacturer was, and the date it was put in! Of course we don't have that info, and never did.
I had CDs of her MRIs and the written reports, but that wasn't good enough. Finally I paged poor Dr Hanna from CHOP (at this point it was 9pm) ... He replied immediately and faxed a letter saying she is OK'd for MRI ... but this wasn't good enough.
When the woman left for a moment, the other tech brought us back and started the MRI. (I had signed the paperwork stating she is ok'd for MRI). As we were leaving, he was getting yelled at ... oh dear.
And apparently everything at Dupont shuts down at night - the doors we enter & exit through were locked and the hallway and lobby were dark. Weird. We found a security guard who let us out, praise the Lord.
So, we didn't arrive home until 11pm. Pretty drained and thanking the Lord for our amazing Dr. Hanna - even though his letter wasn't what they wanted, he was there for us once again!
Monday we will head back to Dupont for the first of 3 days of IV infusions. The infusions are 4 hours long, and apparently have some major side effects. We just pray they help strengthen Emmie's bones & relieve some pain. Although nobody thinks all her pain is from the fractures anymore. It seems to be a neuro thing for sure. I pray the brain MRI will give us some answers.
Thank you for lifting us up in prayer. Busy week ahead. We now have 13 appointments scheduled in the next week - 11 of them are in the course of 3 days!
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." - Isaiah 41:10
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OCTOBER 23, 2008:
Emmie has been suffering daily ... she sometimes seems like she's had it - she tells me she doesn't think she's ever going to get better.
Well .... we have a LOT of appointments scheduled with our new team at Dupont. Tomorrow she's having another brain MRI, looking for hydrocephaly. The Dupont Orthopedist saw a "possible something" on the brain MRI that was done at CHOP last December!! He will be looking for changes from that.
Monday through Wednesday we have the IV infusions of Pamidronate, and another bone density scan, and meet with 2 more specialists, including a Pediatric Diagnostician, who deals with the most difficult cases. She's also going to have a CT Myleogram and meeting with the top Neuro Surgeons after all the testing is done.
I appreciate all the special treatment, but sure wish she didn't need any of it! The traveling alone is going to be rough on her, but I'm praying all of this will help us find answers.
"Ah, Sovereign Lord, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you."
- Jeremiah 32:17
Posted October 1, 2008:
It has been one year today since Emmie's tachycardia (very high heart rates), hypertension (very high blood pressures) and constant - I mean constant - vomiting, started.
One entire year of suffering.
My only thoughts today are that I love this little girl so very much. I just want her suffering to stop. But I am not discouraged. I am totally believing that the Lord will heal her completely. All for HIS glory!!
But, if we ever have any doubts of why she has been suffering so, just read the poem on the last post: "The Brave Little Soul" ... explains it all.
God never gives us more than HE can handle. DAILY I hand it over to Him. I ask Him to take this pain from Emmie, and multiply what little sleep we get, and provide for all our needs, and hold Emmie in His mighty, loving hands. And He is!
God is SO good. ALL the time.
We give Him all the glory!
And we look forward to a BETTER year ahead! In Jesus' name!
"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in church and in Christ Jesus throughout all generations, for ever and ever! Amen." - Ephesians 3:20-21
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100% of all donations go directly to a fund to assist Emmie's family
with the financial burdens brought on by her continued health challenges
and to help save the family home.
Donations for Emmie & her family should be made out to:
Emmie Fund
And mailed to:
Emmie Fund
c/o Commerce Bank
225 Greentree Road
Marlton, NJ 08053
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We are hopeful....
Posted Sept 29, 2008 3:51pm
We saw the special needs dentist this morning. Praise the Lord Emmie does not need any teeth pulled or fillings or crowns! This means the IV infusion treatments for her bones can begin soon!
She will have her teeth cleaned in the office on Oct 14th. Last time we did this in the hospital under cardiac anesthesia and intubation. The dentist (and me too) feels that it's riskier to do it that way than doing it in the office. The reason we did it in the O.R. last time is the risk of her aspirating. But she ended up crashing & they had to bag her in recovery that time! For dental work! So we will take a chance with high power suction in the office.
I contacted the bone specialist at Dupont when we got home, and he has already set up the infusion treatments for Oct 27-29. The kids & I will probably all stay at the Ronald McDonald House for that, if they approve us. This will make things easier on Emmie and cheaper than travelling back & forth those 3 days.
The infusion treatments and their side effects are similar to chemo, so she may have a rough time with this, but we're hopeful that it will help strengthen her bones and give her some relief from this terrible, constant pain.
She's having a very rough several days again. Day and night screaming in pain, tachycardic & hypertensive, and vomiting, the pain is so bad.
Please keep praying! And THANK THE LORD for our new amazing doctors!! We give HIM all the glory!!!
Something a little different to share today....
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Persevere...
Posted Sep 25, 2008 3:22pm
Our new bone specialist doctor from Dupont, Dr Bachrach, called me today & said he has some lab results ... Emmie has an infection. I had suspected this last week so we had started her on an antibiotic. The detailed results came back today showing the strain it is, and we have already had her on the correct antibiotic for this particular infection (great work by our wonderful Pediatrician, Dr Wechsler!)
Dr Bachrach also asked if I was able to get an appointment with our special needs dentist, and I told him how I've left messages with no reply. I tried again when I hung up with him, and it turns out they JUST got a cancellation for this coming Monday! If I hadn't gotten through at just the right time today, we would have had to wait until February for an appointment!
God is so good!!
Emmie is still in a lot of pain, and I asked Dr Bachrach if it's time to consider surgery on her spine to relieve some pressure ... but he is hopeful that the aggressive IV infusions will help this pain.
So, we need to PRAY that her teeth get the "all clear" to move ahead with the IV treatments ... if she needs any dental work, it has to be done before the treatments, because her jaw can be affected and get worse. She will probably need something done because her teeth have suffered with all the vomiting for a year. If she does, we will need to get her in to the hospital, under cardiac anesthesia, and intubated, to do any dental work. Major stuff.
Once we get her teeth taken care of, it sounds like Dr Bachrach will get us started quickly on the infusion treatments.
I'm so pleased with Dupont! Every visit so far with every doc has been a pleasant experience, and all the docs we deal with there are so caring, and we've had hardly any wait time. What a difference for us!
Thank you for praying for Emmie, and the rest of us! God bless!
"Do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what He has promised." - Hebrews 10:35-36
We Are Weary...
Posted Sep 19, 2008 8:43pm
Today we met with the Bone Specialist at Dupont. He was very compassionate toward Emmie and felt very concerned for her. She has been in a lot of pain for the past couple of days again, and screams almost constantly. Dr. Bachrach said the fractures she has are extremely painful, and he believes one of them is compressing on a nerve. He also thinks she may have broken more bones on those few days she was feeling good and moving around more.
He took a look at her mouth & asked me what's going on with her teeth. I told him they're in bad shape because she's been vomiting for just about a year. He said no, I think there's more to it. He thinks she may have Osteonucrosis of the jaw - this is where the jaw bone deteriorates away. We're trying to get into see her dentist right away so he can take a look & see if she's stable enough to start a round of treatment for her bones ....
This treatment is very aggressive, IV infusions for 4 hours at a time, for 3 straight days, and then repeat every 3 months. This will probably begin as soon as we get the ok from the dentist. The treatment has some side effects similar to chemo (without the hair loss). We will probably set it up so that all the kids & I will stay at the Ronald McDonald House in Delaware for those 3 days. It's just too much on Emmie to ride in the car now, and a 1-hour trip each way for 3 days in a row would be torture.
Tonight she is just screaming and throwing up from the pain. I've been writing this update for over an hour, sitting with her and trying to comfort her. Please, please pray for her. She just keeps screaming in pain and we can't calm her. It just makes me cry. In 12 days, it will be one entire year of this. Lord, please heal her, in Jesus' name!
"I sought the Lord, and He answered me; He delivered me from all my fears." - Psalm 34:4
THANK YOU Ken Emery for RUNNING FOR EMMIE in the Philadelphia Distance Run on Sunday! The emmie.info teeshirt was seen by thousands! God bless you for helping in such a huge way!!!
RUNNING FOR EMMIE...
Our family friend, Ken Emery, will be participating in the ING Philadelphia Distance Run in Philadelphia, PA on September 21, to raise money for the Emmie fund!!
This run is 13.1 miles long. If you would like to sponsor Ken per mile, or make a one-time or monthly donation, you can click on the Donations link above, OR mail a donation to:
Emmie Fund
c/o Commerce Bank
225 Greentree Road
Marlton, NJ 08053
August 28, 2008:
It seems we have reached the limit with pain meds. Emmie is at the maximum dose for both Clonidine and Neurontin, and her pain is out of control, as well as her heart rate & blood pressure, and now the constant vomiting has started again. Our cardiologist, Dr Hanna, is working on what to do next ... and the Orthopedist at Dupont thinks this is extreme pain for compression fractures and maybe there's something more... Please pray! Our little sweetheart needs a miracle healing!
We thank the Lord for what we KNOW He is going to do!
"I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, maker of Heaven and earth." - Psalm 121: 1-2
August 13, 2008...
Today we had our appointment with Dr Gabos at Dupont. Emmie had endured a rough night last night and was very tired and in a lot of pain during our visit.
Dr Gabos and his Physician's Assistant Theresa were very concerned about Emmie and showed her a lot of compassion. He even pulled the examining table out and got behind it to examine her, rather than move her. I thought this was very thoughtful.
He viewed all of her MRIs and x-rays I brought him from CHOP, and he said she has so many compression fractures throughout her entire spine that he can't even tell me how many. She also has very weak and thin bones (severe osteoporosis).
He believes that her vomiting which started back on October 1st, with all the wretching and bending over caused her weak bones to fracture, and as she continues to vomit she is getting even more compression fractures. We know that she's always had issues with vomiting, her body's way of reacting to stress or sickness. It seems to make sense.
He also examined her in her body cast/brace that CHOP made, and it doesn't fit her properly to heal the fractures. She has a lot of movement inside it and it should fit snug to support her spine well. So he wrote for a new one, which will be done differently than her present one was,by actually casting her and using that mold for the brace. We are awaiting Medicaid approval, which can take 6-8 weeks. The person in charge of insurance at Dupont has already been in touch with Medicaid and is trying to get it not only covered, but expedited.
Dr Gabos also said Emmie needs a bone doc - one who specializes in the metabolic bone density issues. We have an appointment set up with him (Dr Bachrach) for Sept 19, but we're on the waiting list should they have a cancellation. This will be the big part of trying to get her bones stronger.
I also asked him for his thoughts on pain management for now, and he suggested Neurontin, because it is not addictive, although it is best for "nerve-induced" pain. But it's worth a try. Waiting on the Pediatrician to prescribe this. I pray we get the pain under control at home and avoid the hospital plan.
THANKS for praying! God bless!
"Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need." - Hebrews 4:16
Friday, August 8, 2008:
"Come to me, all you who are weary and burdened, and I will give you rest." - Matthew 11:28
Let me just say that I am so glad to be heading to DuPont next week!
Although today we met another wonderful doctor at CHOP, Dr Behrens in Rheumotology.
He was very caring and showed a lot of compassion toward Emmie. She was having a lot of pain & screaming the entire visit, with heart rates in the 170s!
Dr Behrens looked at all of Emmie's films & reports and informed me that Emmie DOES indeed have compression fractures in her spine! He also pulled up the results of her Metabolic Bone Density Scan, which was done on July 18th (myself & the Pediatrician have not been able to get these results from CHOP) ... this scan shows that she has very poor bone density. She has Osteoporosis and multiple fractures in her spine, very low calcium (which he easily found from her past blood work) and very thin, brittle bones. He also suspects that she has low Vitamin D, which we drew labs for today, among other things.
Her DiGeorge Syndrome predisposes her to have many bone problems, and CHOP is supposed to have the #1 DiGeorge Clinic in the world, and her bones should have been checked years ago. He said he believes this explains all of her pain clearly. The problem is, he does not treat the fractures, Ortho does. But he can help us with the Calcium & Vitamin deficiencies.
He was very confused as to why the Orthopedist at CHOP told me that she had no fractures and told me to take off the body cast! The MRI clearly shows fractures, scoliosis, and butterfly vertabrae. He was happy to hear that I am taking her to DuPont. He said many CHOP docs are proud and push to stay at "#1" CHOP, but DuPont is awesome.
On the way out, we had blood work done (only one stick, praise the Lord!) and I picked up her Spine X-Rays and MRIs as well as Brain MRIs, to bring along to DuPont next Wednesday.
Dr Behrens will call me with the lab results, and he will get a report from DuPont, and we have a follow up appointment with him in one month.
Looks like a long road still, and the future may be very different for her now that we know how fragile her bones are. She is at high risk for fractures everywhere.
For now I am trying to keep her as comfortable as possible until we figure out what to do next. The Clonidine is helping less & less. The Oxycodone doesn't help at all, and Dr Behrens thinks that's probably because she has been addicted to Morphine & Fentanol in the past, so it just doesn't touch the pain for her. Clonidine also treats pain, but it works centrally. It all makes sense.
Please keep praying. I feel we are very close to helping Emmie, but right now she is in a lot of pain, and it's very hard on all of us to watch her and hear her just screaming day & night. We all need rest. Especially of course our sweet Emmie.
Thanks for your prayers. Remember we're praying for all of you, too!
Thursday, July 17th, 2008....
"I pray that out of his glorious riches He may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith." -Ephesians 3:16-17...
Tuesday we met with Dr. Yudkoff, from CHOP Metabolism Dept. He will now be rated up there as one of our favorite doctors. A very sweet, caring man, who showed a lot of compassion toward Emmie during our visit and took a lot of time asking questions and researching test results while we were there. He told me that Emmie definitely has bone deformities, as well as Scoliosis. He also said he cannot imagine the pain she is in.
He ordered several more tests, but he said he won't be surprised if nothing shows up. She has already had most of the tests he would have ordered, and all came back "normal". Many of them he is re-doing, and a couple are new things he's looking into. However, she has already had tests that show she does not have a mitochondrial disorder. He's looking into other metabolic answers.....
Yesterday, we headed to CHOP once again for the Metabolic Bone Density Scan. (Yes, 5 trips in 7 days at 11 miles to the gallon in that big van!) ...This "Dexascan" will show us to what extent her bones are weakened and hopefully lead us on the path to getting her fractures taken care of.
On Friday we will FINALY have the MRI of the entire spine. We've been waiting for this for 5 weeks since we discovered numerous compression fractures in her spine! The MRI will be done under cardiac anesthesia, with the cardiac anesthesia team present, and she will be intubated (on the ventilator), so it's a very big deal. They have listed it under "surgery", and there is a lot of risk with yet another cardiac anesthesia round for her. They remind me of the "hit to her brain" with every cardiac anesthesia/intubation.
The MRI itself will take several hours, and we hope to find out if the compression fractures are possibly pressing on nerves or the spinal cord, and if it will require surgery. I am praying that her Orthopedic doc will view the MRI right away, as he will be on service that day and should be available to read it. Otherwise, we will head back home ... and ... wait ......
In the meantime, Emmie is still in a LOT of pain. We don't see that smile in her eyes much at all anymore. Just pain. I really don't know how she can endure all that she does. Only by the Grace of God. He is so good, and He holds us up through these trials. Never turn your back on Him - because He will never, ever leave you or forsake you - He promises this, and I know it's true ... from experience. Hold onto Him through the tough times & thank & praise Him through the good! He deserves it!
Thank you for keeping us in your prayers, as I know you are! We are so blessed to have the prayer support that we do! God is soooo good!
July 12th:
Praise the Lord, our Yard Sale Fundraiser was a huge success! We had over 20 tables full of great items and hundreds of people showed up to support Emmie's fund and get some great deals! Thank you to all who helped ... we are blessed!
EMMIE YARD SALE FUNDRAISER!!!
Saturday, July 12, 2008
8am-2pm
If you have items you'd like to donate for the sale,
OR if you would like to volunteer to help that day,
Click on the Email Emmie link above!
Monday, June 16, 2008:
We spent the day once again at Children's Hospital, where Emmie was measured & fitted for a body cast/rigid brace for her compression fractures in her spine. She is in a LOT of pain!! The pain meds are barely touching this pain, and she is getting the maximum dose.
The rigid brace will be ready on Thursday morning, and we are also awaiting appointments for Metabolic Bone Clinic and a bone density scan, to figure out why she has fractures, as well as an MRI of her spine.
As we wait for the casting team to finish, I am trying to keep her spine very straight with a back brace I purchased and just carefully helping her with every move. She is pretty sedated with all of her meds, so keeping her still is not very difficult, but if her spine bends, the fractures could get much worse, and possibly cause paralysis.
With our day being spent at CHOP, I wasn't able to reach anyone at Social Security to find out why she was dropped from SSI, but I am praying that it was a mistake that can be fixed EASILY ... not a common thing for Social Security to make things easy! In the past I have had to wait 6-8 weeks for an appointment to find out that the person I need to see is not there that day! Very frustrating ... and now Emmie's health insurance coverage all falls on this!
THANK YOU ALL FOR KEEPING US IN YOUR PRAYERS!! We know that God is in control, and we know that He will provide all we need. He always has. And we give Him all the glory!!
Saturday, June 14th, 2008:
Emmie has been suffering from back pain for quite a while now, and docs hadn't been able to find anything wrong ... Mom took her to the E.R. when the pain seemed very bad ... I insisted on imaging of her spine ... turns out she has several compression fractures in her spine, and they are compressing on the nerves! VERY painful!
So far we are not sure what is causing this (there are old fractures, too), but it seems that her bones are very thin and weak for some reason ...
We were discharged with the plan that Ortho would see her immediately and fit her for a BODY CAST and do an MRI ... I am now waiting to hear back from the Ortho docs!!
In the meantime, Emmie is in a LOT of pain. I am trying to keep her comfortable, and she's getting pain meds, but they are not touching this pain.
Please keep her in your prayers!
We also found out today that she has been dropped from SSI, which means we have NO HEALTH INSURANCE!!!
We need some miracles!!!
Thanks for praying! God bless!
-Kim
January 18, 2008 ...
I apologize for not updating for a while, but Emmie has been very sick. We spent another several weeks in Children's Hospital. She was admitted on her BIRTHDAY, November 28th, poor baby. I tried to keep her home as long as I could, but she was just too sick, and becoming dehydrated.
During this long hospital stay, she tore her esophagus from all the vomiting, and her heart rate & blood pressures became dangerously high! She had several more MRIs and CT scans, and doctors had her in & out of the O.R. several times for Enteroscopy, to change her G-Tube to a G-J tube so she can now be fed down into her "jajunem," or small intestine, and she also had a PICC line placed. This is a central line going from her arm, inside the vein up and across to her chest, sitting just next to her heart. The PICC line makes it possible to feed Emmie through her veins, as she simply throws up everything that goes in as feeds.
This last hospital stay was very hard on Emmie and the rest of the family. I stay at Emmie's bedside every minute, so it's sometimes hard on the other children, but they agreed that Mommy needs to be with Emmie, and they insisted I stay. They came to the hospital every day, spending entire days with their little sister. This made things easier on everyone, that we could all be together.
Emmie continued to get worse, and her heart rate & blood pressures continued to increase, but doctors decided there was nothing more they could do, and Emmie was discharged on January 1, 2008...
I continued to care for Emmie, her meds schedule now CRAZY! Two weeks later, with Emmie still very sick, I decided to call Emmie's Cardiologist from CHOP. He said he wants to see her immediately, and he ran several tests, none of which gave any answers. He then vowed to spend the next day wandering the hospital talking with other experts, to figure this out! At this point, Emmie's heart rate & blood pressures were extremely high, despite 3 new blood pressure medications being administered, and she was still vomiting several times a day.
Her quality of life became very poor.
Dr Hanna ended up spending two days researching and looking over Emmie's past and recent MRIs and CT scans. He met with Neuro Radiology and the Renal docs (because blood pressure is controlled by the kidneys).
He discovered that Emmie has several pin point hemorrhages, and a certain part of her brain that controls heart rate, blood pressure, chewing, swallowing, walking, and talking, is shriveled up, and not growing along with the rest of Emmie's brain. This is a result of her cardiac arrest & strokes she had in 2002, at the age of 2. This is devastating news, and we have vowed to work at giving Emmie the best quality of life possible. This damage to her brain cannot be repaired medically, but we do know Jesus is the Great Physician, and we continue to TRUST and PRAY!
A new blood pressure med has been started, which acts against receptors in the brain stem, and PRAISE THE LORD, it has started lowered her blood pressure!
However, Emmie is still feeling very sick, and her quality of life is still a major concern. Dr Hanna has been wonderful, talking with me twice every day, supporting me with regulating meds and getting daily & nightly updates on Emmie.
The plan now is to have her admitted once again to Children's Hospital, into the O.R. to get a new PICC line, and start her back on the TPN feeds to give her gut a rest for a month or two. We are not sure if this will help, but we are desperately willing to try anything to help this little girl!
Please continue to PRAY for Emmie ... we truly need a MIRACLE!
November 27, 2007 ...
Throwing up a little and wretching a lot still this morning. Her "belly hurts real bad". Praying this new med we started today will help. God is in control, He knows best, and He wants the best for her. That's all we're praying - HIS will. Tomorrow is her birthday, and we pray she will get to stay HOME!
November 26, 2007:
Today has been another roller coaster. She started throwing up again around 11:30 (that's every 2 days now), so I gave the usual dose of rectal valium and compazine suppository. It was really the last straw for me, as she's now received the valium and compazine 4 times in 4 days.. I started calling Neuro this morning, called several times throughout the day, and finally got a return call at 5pm! Neuro doc said maybe it's time to stop the preventative Topomax (because its not preventing anything), and start Phenobarbital. She also decided to stop the Compazine and start Fenergan instead, along with the Ativan, when she starts a vomiting cycle.
She asked me how much Compazine "they" were giving Emmie (her team ordered it). She said is she getting 2.5 or 5? I said she is getting 25!! So we realized that Emmie has been getting 5 times the recommended dose of Compazine! I spent a good part of this evening on the phone with Poison Control Center deciding if she had a lethal dose in her or not! She is right on the border!
She has been out cold for several hours, but i am able to arouse her a bit, and I have all her monitors hooked up. Scary stuff. I'm really tired of these docs playing with her life. And as of tomorrow, we start experimenting with another major drug, phenobarb!
I also contacted Dr Li's secretary in Wisconsin today and got Emmie registered with them. They are booking 6 weeks out, so we're looking at January. I cant imagine Emmie enduring 6 more weeks of this... but it will take us a while to gather all the reports & records I'll need to take with us anyway.
One road block we've already hit: Dr Li does not participate with our insurance! The Pediatrician told me in his experience its very hard to get them to authorize a non-participating out-of-state doc. We need to submit a request and they always deny the 1st request ... then onto another plea ... it could take months and then still not get approved...we need to go soon - Emmie is getting worse... its all in the hands of the ins. company... and the Lord.
Please pray for the Lord to find us a way to get to Wisconsin and see this specialist. Every one of Emmie's docs here now agree we need to go.
Thank you!
Blessings,
November 21, 2007:
Well, we have been home 2 days now, praise the Lord! Emmie seems happy to be home, but she's not quite herself. We are definitely seeing signs of side effects from this new medication they have her on to medicate her brain, hoping to shorten future Cyclic Vomiting episodes.
She is very wobbly, not able to walk, her pupils are dilated, and her speech is more jumbled than usual. It's sometimes very hard to understand what she's saying, but she is always patient with us! It's hard to see her with effects of the drug - also a reminder of all she is going through these days.
The plan for now is to keep her calm, with not a lot of stress or excitement. (Cyclic Vomiting Syndrome episodes are usually triggered by excitement such as a birthday party). Her birthday is in 7 days, so we're trying to figure out how to celebrate this wonderful day with very little excitement! She will be 8 YEARS OLD, what a miracle!!
If / when (doctors say WHEN) she has another episode, the plan is now rescue measure at home with rectal Valium and Compazine, to get her to the hospital, where they will administer IV fliuds and large doses of Ativan and Zofran, to try and sedate her and limit her suffering throughout the cycle.
We don't believe this is God's plan - the choice of either uncontrollable vomiting, every 5-10 minutes, for a week or more, OR being sedated. This is not the quality of life we know that God wants for our sweet Emmie. We are still praying for God's will & wisdom, in whether or not we should travel to Wisconsin to see Dr Li, who specializes in Cyclic Vomiting Syndrome. It seems like a traumatic thing to put Emmie through right now while she is fragile, although he is the expert in this terrible syndrome.
Please pray along with us for wisdom! This is very tough for all of us, seeing Emmie suffer, but we are celebrating each day we can be at home, out of the hospital.
Next Tuesday we have a follow-up appointment with our wonderful pediatrician (who came to visit Emmie in the hospital), and we see the Cardiologist this Friday, the 23rd. We will keep you posted. Thank you for your continued prayers for our sweet baby!
A personalized Web page, called a CarePage, has been created for Emmie, so you can easily receive the latest news, view photos and share messages of support. I'm not able to update this website from the hospital, but i can occassionally get online to update Emmie's CarePage, so hospital updates will be posted on the new site.
To visit Emmie's CarePage, please click the link below: http://www.carepages.com/ServeCarePage?cpn=EmmieMangione&extrefid=tlcinvite
(If you cannot click through this link, please copy and paste the entire URL into your browser's address window.) ...or you can use these manual instructions:
1. Go to www.carepages.com
2. Click "Visit a CarePage"
3. Register (first-time users only)
4. After you've registered, enter the exact CarePage
Name below:
EmmieMangione
Please forward this e-mail to anyone who would be a meaningful part of Emmie's support group.
November 18, 2007:
Last night Emmie started wretching & gagging again, so docs gave her sedation doses of Ativan & Zofran to try & stop what they assumed was another CVS cycle starting again. The amounts of drugs they gave her should knock out a grown adult, but Emmie just became MORE AWAKE! Apparently now she is having adverse reactions to the only drugs that had helped even a little! Emmie's doctors went back & forth this morning trying to decide whether or not she was ready to be released from the hospital, as, in their words, they really weren't helping her anyway. Dr Chin - a wonderful Cardiologist - is so caring & is worried about sending her home with no good plan for prevention, and now no plan for rescue treatment either! But, he looked at Emmie, who was pleading to go home, and decided to discharge us today. We arrived home around 7pm, and we are PRAYING that we will be able to stay home for a while! The doctors are sure that she will have another cycle, and it could be very soon again, Doc told me to be prepared to come back, and they will need to start from scratch on what meds to experiment with! Please keep praying! I believe this is an attack from the enemy, and he has NO AUTHORITY over this little girl! Jesus has all authority, and He is the Great Physician! We believe that the Lord will heal her - and we will once again give Him all the glory! Thank you all for your prayers, emails, meals for our family, and cards supporting & lifting up Emmie (and me!) God bless you! -Kim
November 16, 2007:
I asked the Case management team here to check into whether or not insurance might pay for us to see Dr. Li in Wisconsin, who specializes in Cyclic Vomiting. Please pray for favor in this situation. The Neurology team here at CHOP as well as Emmie's pediatrician and the team in Wisconsin all feel that we should go. We're just praying for God's will. A friend of mine told me about an organization called Miracle Flights, who pay for medical flights, so maybe they could help us out with the travel portion. And if there is a Ronald McDonald House nearby, there's more help! Lots of research to figure it all out ...If God wants us to go, He will make a way. This morning Emmie looks very spacy from the new drug, and her pupils are very dilated. She's also forgetting simple things. This is the drug she will remain on with the hope it might prevent or lessen future episodes. Thank you all for your prayers! Blessings, Kim
November 15, 2007:
Emmie and I were surprised with a delivery of e-cards
yesterday ... a total of 39 cards arrived!!! And today
Kira brought 18 hand-made cards from Emmie's KWAM
buddies at church!!! I have been hanging them all over
the walls for Emmie to see & be reminded how much she
is LOVED! This helps her so much, and we both thank
you for your love and prayers for her!!!
Please continue to pray for Emmie and wisdom for her
docs. They are still experimenting with meds, and this
Topomax has many side effects. Some of the side
effects I'm seeing already - she is forgetting colors
and even forgetting things that happened within 10
minutes. Last night Andy brought her flowers and she
was so excited & we talked about where she would put
them - and 5 minutes later her nurse came in and Emmie
couldn't remember who gave her the flowers. She got
sad & said "I don't remember."
Emmie's Cardiologist was concerned about this drug
because it has some severe side effects, one of which
is memory loss - which is usually permanent. The one
drug that Dr Li in Wisconsin has had great success
with was only tried for half a day, and our docs
decided to stop it! Now we're back to the one we had
when we home this last time & she had a relapse (so it
seems it wasn't working, but they're trying it again
anyway). However, any of the meds they try will be
affecting her brain, because that's what the med is
for - to medicate her brain, hoping to prevent or
lessen the severity of these Cyclic Vomiting cycles.
Docs plan to keep her here at least through the
weekend, so they can see how she's adjusting to this
med. They're also working on a rescue plan for me for
at home. I will have to watch her very closely for a
long while now, as the meds adjust & she "gets used to
them".
Thank you for your prayers! I can very rarely get
online, only when I can borrow a laptop, so forgive me
if I don't reply ....
Blessings!
Kim
November 10, 2007:
Well, we have spent yet another rough stay in the hospital.
Emmie was having another episode of vomiting, every 10-15 minutes,
which lasted another 6 straight days & nights this time! She also had a
severe headache with it. So, we now have another diagnosis to add to
the long list!
Docs have now given her a diagnosis of "Cyclic Vomiting" which is
actually a "diagnosis of exclusion" which means there is no test for it;
it's diagnosed after everything else has been ruled out.
It is a form of seizure-related migraines with severe vomiting.
Docs have sent her home (Praise the Lord!) with 2 new meds:
Topomax (which is a seizure medication), and Valium. We pray that
these meds & the Lord's healing will prevent these terrible episodes from
happening any more!
October 24, 2007:
Today was another day at Children's Hospital
for a procedure to check Emmie's kidneys & bladder...
It was pretty rough, but Emmie was VERY BRAVE!
Miss Melanie, a Child Life Specialist, explained everything to Emmie
and showed her what they would do, demonstrating on a doll named "Emily!"
Miss Melanie also had bubbles and a cool flashlight with a viewmaster
to show Emmie movie pictures on the wall during the procedure!
And, praise the Lord, the results were "NORMAL"!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Emmie had a recent stay
in Children's Hospital
with an infection ...
She endured several tests
And was feeling pretty bad ...
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On Sunday, September 9, 2007
Emmie made the decision to be BAPTIZED!
Pastor Don said, as he held her down toward the water,
she held her arms out and looked him in the eyes,
the perfect picture of TRUST.
Emmie trusts in the Lord with all her heart.
He is, after all, her Healer!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Emmie had a happy, HEALTHY Summer ...
Cheering for her brother Christian at Baseball Games,
Going to the Shore,
Floating in Her Pool,
And Even a VACATION in New England!
Check out "NEW PICTURES" To Share Emmie's Summer!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On November 28th, we celebrated
yet ANOTHER miracle ...
Emmie's 7th birthday!!!!!
HAPPY BIRTHDAY, EMMIE !!!!!
We praise the Lord for the GIFT
that YOU are to US !!!!
December 13, 2006 ...
PRAISE THE LORD!!!!! We've picked up Emmie's van!!! It's been modified with a wheelchair lift & tie downs for her wheelchair!!!
Emmie absolutely LOVES the freedom of driving up onto the lift and every time she does, she shouts "This is so awesome!!!" We all LOVE the fact that we no longer have to lift the 300 pound wheelchair into the ol' Suburban anymore!
Thank you to all of you who have been praying about this! PLEASE continue to pray that we will hear from the Catastrophic Illness Fund about help with paying for the van. The committee is due to review more applications in January. We are way beyond our budget with this van payment. It was truly a leap of faith, and we do believe that the Lord will provide!
Thank you all for your love & prayers!!!
November 25, 2006...
Emmie has picked up a cold & we don't like the sound of her cough - please pray along with us for healing for our sweetie!
We had a visit with Emmie's Cardiologist, Dr Hanna, at Children's Hospital yesterday. He mentioned her tube feedings. She has been on continuous feeds for about 3 years now, always hooked up to her feeding pump. She cannot take anything by mouth - no eating, no drinking, and that looks like it will be permanent.
But with her feeds running continuously, she doesn't know the feeling of being hungry, or the satisfaction of feeling full; she's just always at a maintenance level.
So, he has ordered some tests to see how her system is doing now. She will have an upper GI to see how her motility is (it was extremely slow in the past, causing them to put her on this low amount of feeds continually). This will also show how bad her reflux still is. If things are still "backing up", she will have another SURGERY. This one is called a "Nissen Fundoplication", where the top of the stomach is taken through a space created behind the esophagus, and stitches secure the stomach to the esophagus, creating a full wrap around the lower esaphogus. Looks like a long recovery time on this one... if she needs it.
If her tests show that her reflux is not too bad, I guess he's taking the chance to start her on "bolis feeds" (we've tried this before & she became very sick) ... He said it will be a long process - we will start her off on larger doses, gradually, and give her time off of her feeding tube in between. We know from her past with this that we have to take things VERY slowly. And now her stomach is very small, having been on such a small dose for a few years now.
But no matter which route we have to take, it looks like Dr Hanna's goal is for Emmie to be able to feel like a regular kid as much as possible, and have the freedom to be "off her leash" once in a while. ("Quality of life"). When he was explaining this to me, I told her maybe we can get her off her tube every day for a while, and she cheered aloud "YES!" ... So, I guess she's in agreement with the doc!
I, of course, have my concerns. (I'm her mom, it's my job!) We've tried bolis feeds before & it went badly, and the possibility of surgery terrifies me. But we trust in Jesus, our Great Physician. We pray for wisdom for all the docs involved, through upcoming testing, possible surgery, for ME for wisdom in regulating her feeds as the time comes, and knowing the signs to look for if she's in any type of distress (as always). We do know that Dr Hanna is an extremely gifted Cardiologist, and we have been blessed to have him caring for Emmie for most of her life. I believe the Lord has appointed him personally and is healing her through this awesome doc! Yes, the Lord does use people still today - whether or not they realize it even!
Sorry this was a long update ... thank you for keeping our little sweetie in your prayers!!
By the way, she will be 7 YEARS OLD on Tuesday!!! (And she wasn't expected to live to be 18 months!)
PRAISE THE LORD!!!!!
November 2006...
Emmie has been blessed with a new POWER wheelchair!! She loves to drive around & be independent like other kids, but this new "vehicle" means the family NEEDS a wheelchair adapted van !! The power chair weighs 280 pounds, so Emmie's family is having a hard time lifting it into the back of that old Suburban !!!
We have taken a huge leap of faith in purchasing a large van to fit the family & Emmie's chair (with a payment beyond our means), and appreciate your prayers, agreeing with us that the LORD will provide the means to keep up the van payments!
We have applied to an organization that aids families in these types of large expenses, and we're praying to hear from them soon, and that they will help with this large expense!
In the meantime, Emmie's van is being modified with a raised roof, raised doors, and a wheelchair lift, which will take several weeks to complete. Thank you for praying along with us, believing that GOD will meet ALL of our needs, in JESUS' name!!
Amen!
November 6, 2006 ...
Thank you all for keeping our little sweetheart in your prayers for last Friday's dental surgery! The surgery went smoothly, but recovery, as always, has been rough. Coming off of anesthesia is always very difficult for her, and this time is no exception. She is finally back off of oxygen again, but still not herself yet, and we appreciate your prayers for her to be back to her happy little self very soon!
October 2006 ...
Please pray for Emmie's upcoming dental surgery scheduled for Friday, November 3rd. Pray for her to remain healthy going into the hospital & for a quick recovery! We will keep you posted.
Thank you!!
July 2006 ...
Please keep Emmie in your prayers, particularly for an infection she has developed on her face. She has a mysterious, recurring rash that is very severe, and has her docs concerned. It is also very painful for her, causing her face to swell up & become raw and blistered, and it's very hard for her to speak. It has cleared up several times, but returns again within days, becoming severe and painful within hours! One big concern is that this virus could travel to her eyes, causing blindness. Since she has an extremely weakened immune system, her body cannot fight this virus. Her doc has prescribed more meds through her G-tube, as well as a topical ointment, but neither seems to help. We are heading to Children's Hospital on Thursday to the Immunology Department, hoping they can help her battle this infection. But ultimately, we turn to The Great Physician, Jesus, for total healing! She is a miracle already, and we believe in more miracles ahead! Amen!!
June 2006 ...
Thank you all who are faithfully keeping Emmie in your prayers! Please continue to pray for HEALING for her heart, lungs, lung blood vessels, her muscles to support & improved mobility, and for her to be able to EAT and DRINK once again some day! She tells Mom every day, "I wish I could eat."
Emmie is becoming a great driver, with her power wheelchair!! It's been a lot of work, but she's finally getting the turns down pretty well! She hasn't run over anyone's toes in weeks!!! We're still taking it apart and lifting into the back of the old Suburban - it weighs over 300 pounds, so we really do need a van with a wheelchair lift, or new muscles for Emmie's family members!! Thanks for your continued prayers on this!
December, 2005 ...
We were blessed to have Emmie home with us for another Christmas! No hospital stay, praise the Lord!! Take a look at the "New Pictures" link to share Christmas with Emmie!
November, 2005 ...
Emmie has had a rough couple of weeks ... we had a cold come through our house and it hit Emmie pretty hard. She's been very lethargic - just feeling terrible. Her birthday was spent at the doctor's office & getting chest x-rays for pneumonia. But she is still smiling and praising the Lord !!
Our little miracle baby is now SIX years old !!! Praise God for our beautiful, precious gift, Emily Grace !!
Thank you Jesus, Our Great Physician !!!
October, 2005 ...
Emmie had a visit with her Special Needs Dentist, and we found that she has no enamel on some of her teeth, apparently something from birth. This is a big problem, and needs to be fixed with crowns. Also, some of her baby teeth have no permanent ones to come in, so when they fall out, she will have no teeth there! Not sure what he will do about no permanent teeth, but for now, he has scheduled, along with her Cardiologist and Cardiac Anesthesiology, to have her admitted to the hospital, put under, and intubated - all for dental work - because they cannot do work in her mouth with her airway at risk for aspiration! So a dental procedure has turned into a major deal! Nothing is easy with our little Sweetheart!! Please keep her in your prayers!
Also, we had a visit with the Pediatrician & she had her flu shot. While she was there, he decided to do a vision test. We made sure she recognized all the symbols on the eye chart before beginning, but she failed her eye exam miserably! The nurse was stumped, but I reminded her that Emmie was completely BLIND after her cardiac arrest & stroke a couple of years ago, and the Neurology team at Children's Hospital said she would never see again. And if the slight chance of her gaining any sight did occur, she may see "like swiss cheese". She has Cortical Blindness. We will be taking her to a wonderful Pediatric Opthamologist in the near future, to see if she's straining her eyes to try & see what she can, and if we can maybe help her.
Thank you all for keeping her in your prayers - we are so blessed to feel the prayers of loving friends - many of whom we haven't yet met !! God bless !!
October 1, 2005 ...
Medicaid has decided to drop all of Emmie's benefits! We believe that the Lord is in control, and He works all things for good for those who follow Him. Thank you for praying along with us, that we will find a way for Emmie's high medical expenses to be covered. In Jesus' name, Amen!
April 2005:
THANK YOU for praying !! And PRAISE the Lord, we have finally had a "routine" cardiac cath !!!!!
Here is what we've found out ...
The lung perfusion scan and cath showed that Emmie's right lung is at 78% capacity, while her left lung is only at 22%. There is nothing that can be done for her left lung, as there are no vessels going to the lower lobe where there is no function. No vessels to tie in or open up to help this. So the left lung is just tissue sitting there, with a major risk of infection / pneumonia. She is working with the equivalent of one lung. Yes, people can live with one lung - but having one removed & functioning with the remaining lung is a better situation than what Emmie has right now, since her left lung is sitting there with risk of infection.
Her aortic valve pressure is higher than the docs would like, at about 15, but should be at 6. But, the Cardiologist said "at least it's not 25". Also her right heart pressures are high.
The plan now is to keep her healthy - risk of infection in her left lung is high if she picks up a cold - she has "no reserve" - meaning that her heart is already at full capacity just with the extra work it's already doing, and she has no way of fighting infection. Also the risk is high if she aspirates (this is why she cannot take anything by mouth & is only G-tube fed). We also have to watch that she doesn't gain too much weight, because of her poor lung capacity. Her heart & lungs will have to work harder to support a bigger body.
Her Cardiologist will watch her very closely, especially keeping an eye on that left lung and the high pressures in her heart and aortic valve, and he's hoping to do another cath in about THREE TO FOUR YEARS!!! Praise the Lord, he's talking YEARS !!!!!
Specific prayer requests: For Emmie to remain healthy as far as staying clear from colds / viruses - for her right lung to continue to work at the 78% capacity that it is, and to grow along with her body - for the pressures in her right heart and aortic valve not to get worse - and of course we can think big & pray for a miracle : I know that God can make new lung blood vessels where there are none - we've seen more amazing things with her already!!
Thank you for all holding us up in prayer !!! And THANK YOU JESUS that we had a routine cath for once, and we are HOME !!!!! God is so good !!!
March 26, 2005 ...
PLEASE PRAY !!!!
Emmie is scheduled for her next cardiac catheterization on Tuesday, April 5th. We will go into Children's Hospital on Monday the 4th for pre-admit testing, and on Tuesday the docs will get a look at what's going on with her heart, lungs, and lung blood vessels, and see what to do next. She has had MAJOR complications from this procedure in the past, and she needs all your prayers!! We know that Jesus is the Great Physician and we put our trust in Him!! We THANK YOU for continuing to pray for Emmie for HEALING, for her doctors for WISDOM, and for her family for PEACE & strength !!
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Today at church Emmie decided to go up to the front for prayer, all on her own using her gait trainer! It was so cute, and Mom followed her up. When we got to Pastor John, he asked if she wanted prayer. Emmie nodded yes, and when he asked what she wanted prayer for, she quietly said "Mommy". With all of the physical & medical needs she has, she selflessly asked for prayer for her Mommy! Now THAT is the perfect example of the kind of kid she is!! Praise the Lord for my sweet little miracle!
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February 2, 2005 ...
Today is Emmie's "HOMECOMING DAY"!! She arrived from Korea FOUR YEARS ago, at the age of 14 months, weighing only 12 pounds! Since then, she has had many surgeries & setbacks, but she is thriving & smiling, and she continues to bless us every day !! Praise the Lord for our sweet little Miracle!!!
Emmie's friend Bigsby wrote her a little song to celebrate. Click to hear it ...
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She has just received her new leg braces & trying to get used to them is quite a challenge! We are still praying about her new gait trainer (walker) that she desperately needs for mobility, so she can walk short distances. So far, no word from Medicaid on the subject.
Docs plan to admit her for yet another cardiac catheterization soon after Easter, and see where to go from there as far as the next surgeries.
Thanks for praying !!!!
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December 26, 2004 ...
Emmie has been doing very well in every way, including medically !! Her Cardiologist is hoping to keep her HOME until early Spring, when he plans to do another cardiac catheterization to see what's going on with her heart & lungs & lung blood vessels, and what more can be done surgically.
We recently celebrated Emmie's 5TH birthday !! We had a party at church with all her friends & church family & she actually was able to blow out her birthday candles for the first time !!
To celebrate the Christmas season, Emmie was an ANGEL in our church's Christmas play !! Be sure to check out all the new pictures !!! She is really growing into a beautiful little girl, and she is such a BLESSING to us !!!
She has an appointment scheduled in January to see her Orthopedist, although Medicaid is giving me MORE trouble about approving the appointment !! She has long grown out of her leg braces, and is walking around in her gait trainer quite a bit, and she really needs new leg braces, as she is doing quite a bit of damage to her legs just by weight bearing. She also needs a larger gait trainer, as she is towering over this one & could actually tip it over ! Please pray that God will soften the hearts of the Medicaid workers so we can get working on this !!
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Praise the Lord ... Emmie's Special Needs Enclosed Bed has arrived !!!! She can now sleep safely & even has room to roll around !! She is so excited to have a "big girl bed" and just LOVES it !!! PRAISE GOD !!! Thank you all for your prayers on this one !!!
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We have been blessed to be home
& out of the hospital for a few months now ...
Emmie has been doing pretty great
considering all her struggles !!
God is so good !!!
She is still unable to eat or drink, so she has
continuous feeds through her G-tube, around
the clock, as well as several cardiac & GI meds
keeping her going.
But she remains her usual, HAPPY little self !
We recently had a visit with Dr. Hanna, Emmie's Cardiologist from Children's Hospital, and he would like to give Emmie some well-deserved time at home,
since she's spent so much time in the hospital,
and it's time she got to enjoy some nice weather !!
He would like to do another cardiac catheterization to see how
her heart, lungs & lung blood vessels are doing, but for now, we get to stay home,
as long as she remains stable !!
PRAISE GOD !!!!
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February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date! October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
February 26, 2010: Emmie & her family have been enoying a quiet winter so far. We praise the Lord that she has been stable and we are planning her next round of IV infusions, which Mom will be doing at home, to avoid hospital germs this time.Please see all the "New Pictures" by clicking on the tab above!! TGI Friday'sof Marlton, NJ is hosting a fundraiser for Emmie & family!! Wednesday, Dec 30th, starting at 5pm. Friday's at 970 Rte 73 North, Marlton, NJ Details to follow... Save the date!October, 2009:This time of year, just a few years ago, Emmie suffered a cardiac arrest,strokes, cortical blindness, and had a FLAT-LINE EGG (yes, NO brain activity!)She was non-responsive. Doctors would tickle her eyeballs and she would notrespond. Mom was heartbroken when Emmie had no reaction to her voice.The Neuro team at Children's Hospital said Emmie had "reached her plateau"and would never see again & probably remain non-responsive.Today, we PRAISE THE LORD that Emmie, just 9 years old, now sharesher testimony with total strangers (just friends she hasn't yet met) and tells themhow God healed her! Thank you, Jesus!We are planning a Sept 15, 2009: ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
