Thank You "Give Kids The World "

Thank you doesn't come close to how grateful we are to this amazing foundation . Henri Landwirth founded GKTW to fulfill children's wishes. His life story is truly inspirational.
For one week all of Teresa's wishes came true. She enjoyed every minute of it ! I was afraid the heat and excitement would be too overwhelming for her but she felt great. The Florida weather was very hot but a cool breeze always came along at the right time to cool her off.
We met some incredible volunteers at The Village. They came from all over the country to volunteer and help fulfill children's dreams.
Webster defines the word Miracle as an extraordinary event manifesting divine intervention in human affairs.
The volunteers at The Village are miracle makers. For one week we did not worry about anything . We made so many happy memories with all of our children and our very close friends .
The Disney Princesses were amazing. Belle, Aurora and Snow White were so touched by Teresa's story . Belle was very emotional and Snow White had a tear in her eye. They made Teresa feel so special .

" A Moment in Time"
He touches a child's hand
Her flesh warm as summer sand.
A smile brushes across her lips,
He traces it with his fingertips.
innocence, afflicted without reason:
Death, stealing life in spring season.

Words fail him, they cannot explain
Any reason to justify a child's pain.
She smiles again , does not complain,
Her mother, nearby, nearly insane
From searching for the smallest grain
Of hope amidst such a fruitless plain.

Her child's body has turned against her,
Like cruel winter wind against the shore.
Her spirit learning from her body's pain,
Such a price for knowledge gained!
Tears whisper across sallow cheeks,
Her life measured in days, perhaps weeks.

He has brought them here, a last request,
To provide a memory of the thing loved best-
Mickey Mouse in his Magic Kingdom
Free from disease, worry or harm.
Disney's magic wraps sickness in its arms,
And, for a child's moment, works its charm.

By Henri Landwirth

Princess Wishes

Today for Teresa's "wish", we went to the Studios to meet the cast of Beauty and The Beast. Teresa was mesmerized by the show . Afterwards we went back stage and met the cast . Teresa and Belle talked about being a princess, make up, jewelry, wishes , dreams and of course wearing oxygen . I know the characters play a certain part and are scripted on how to talk to the children and how to interact with them but this princess really went above and beyond any of our expectations to accommodate Teresa. She made this dream of Teresa's so special . You could tell she really was touched by her .
This evening we went to GKTW for a Christmas dinner. Every Thursday is Christmas. We had dinner with Mrs. Claus. Afterwards we met Santa and all of the girls received Christmas gifts. There was Cookie decorating, caroling, snow , horse rides, stories, and more gifts... To say GKTW is an amazing place is an understatement. They truly make everyone feel so special .

Princess Day

Today we went to the Magic Kingdom for Teresa's Princess meet and greet. She made it from 9am to 9 pm and enjoyed every minute of the day . I wasn't quite sure how she was going to do with all of the excitement and heat but she did fantastic! She truly enjoyed every thing . Watching the excitement on her face was priceless. She told the princesses all about her Aurora doll wearing her oxygen and how she wears oxygen too . Princess Aurora spent a lot of time talking with her about how SHE needs oxygen also. Teresa just smiled ear to ear. (she even asked to wear her oxygen when she felt like she needed it. A first ). Aurora gave her a kiss on the cheek and then transferred it to paper and autographed it for her.
We spent most of the day at MK and then went over to Epcot to watch The Summer concert series. This week it is a tribute to The Bee Gees . The girls LOVED it (me too!) . They were singing and dancing to all of the songs. ( Gemma was so funny she was doing ballet steps).

Today we all had on our matching adopt t- shirts. Alex thought we looked like a reality T.V. show on TLC. We had so many people (35) stop and ask us about international adoption . I was so surprised by the number of people that want to adopt but don't know where to begin. I gave them the information on our adoption agencies that we have used and hopefully they will follow through and there will be 35 less orphans soon.

We are all having such a fantastic time watching Teresa experience her wish of being a princess. She is so happy , I don't think she knows quite what it all is about. She is taking it all in .
Tomorrow we will head over to Hollywood studios and meet the cast of Beauty and the Beast.

magic

Having a magical time .
Today Teresa made her Wishing Star at " Give Kids the World ". She wrote her name on her star and made a wish . Tomorrow we will go back to see where it was placed on the ceiling . GKTW is an unbelievable village for children . What they do for families with sick children is so special . They made Teresa feel like a "Princess".
We did not go to the parks today because the heat index was over 100 and it was just toooo hot. Tomorrow we are going to get an early start and go to The Magic Kingdom . Teresa has a special meet and greet with ALL of the Princesses. She is so excited. We have been taking it very slow so she does not get overwhelmed with the heat and the excitement of it all. It can be a little overwhelming at times for her.

Florida

Teresa is having a great time .
Our flight was delayed leaving Baltimore and we did not arrive into Florida until after midnight. Teresa did very well on the flight for the first hour and then her oxygen started dropping dangerously low into the low 60's. Luckily the oxygen brought it back up into the 70's and she was feeling a lot better.
Yesterday we let her rest and kept her in the A/C. Today we spent time at the pool and she loved it. Tomorrow is a PRINCESS day and she is so excited . We are headed to The Magic Kingdom for some princess time.
I will try to post photos tomorrow , my computer has been acting funny.
Thank you everyone for continuing to pray . Lucy is feeling much better and Teresa is not showing any signs of getting the virus Lucy had .
Keeping our fingers crossed !!!

Counting the days ...

Last night our 2 angels from The Make A Wish foundation came over to deliver Teresa's itinerary for her wish trip. It is going to be a wonderful trip filled with so much magic for Teresa. The excitement is growing . The girls are counting down the days!

Last week Teresa informed me that she was not going to wear her oxygen in Florida because Princesses do not need oxygen . The child life specialist at Hopkins came up with a fantastic idea . They gave Teresa a Princess Aurora doll wearing oxygen . She was so happy . She can not wait to show all of the princesses her doll wearing oxygen just like her.

A few days ago Lucy started not feeling well. She has a very bad virus that is affecting her asthma along with a very high fever.
She is on an antibiotic, oral steroids and nebulizer treatments trying to get it under control.
For the past 11 months we have lived in fear of
Teresa catching a virus . If she should get the virus Lucy has , she most likely will not be able to go on her trip.
I must sound like a broken record to the kids saying ,"take off your shoes, wash your hands, can that be bleached?..." I am so tired of living in fear .

I am trusting God will protect her and give her the most magical week of her life .

Anticipation

The anticipation is growing !

The girls are so excited . Teresa has packed and unpacked her princess suitcase 100 times . She has it filled with all of her treasures.

We leave in little over one week . Gemma will go tomorrow for her blood transfusion ,oxygen has been ordered for Florida, portable oxygen concentrator has been ordered for the plane,all Teresa's, Gemma's and Lucy's medicines will be delivered tomorrow and all Teresa's Doctors have been notified along with which Hospital to contact in Florida should we have an emergency . I think we are good to go !

On a much sadder note , we received very sad news this week from China. Josiah ( the little boy we found starving to death in a BJ. orphanage in November 2009 and had moved to Lynsay and Bill's orphanage-Morning Star Foster home-), was sent back to his orphanage this week . The local family trying to adopt him was not permitted to . His file will supposedly now be prepared for international adoption . This could take months. Although this orphanage is one of the nicest orphanages we have seen , it is still the same orphanage that was letting him starve to death . It is not a family with a Mom and Dad. It is very sterile . I have to trust that God has a plan for Josiah's life that will some day involve a family of his own . Until then we must pray for him not to lose hope and to keep his health strong. At this same orphanage is another child we met in November 2009 also who still waits for her family to find her . I am not sure why she is still waiting... she is beautiful , kind and very soft spoken . Her medical condition is arthrogyposis. If you would like any more information on Josiah or Jia Yi please let me know .

CHOP report

Yesterday as we went to CHOP we were really hoping the increases in Teresa's medicine would produce better heart function . Unfortunately the news was not good. The meds. are keeping her stable for now but she has not had any improvement in her heart or lungs.

Her tricuspid valve is still severely leaking, her pulmonary pressure is EXTREMELY high ,the pulmonary gradiant has not improved,she has not gained weight in 6 months, her hemoglobin is very high causing her blood to be very thick and her liver is still enlarged.
The scenario the Doctor gave us was: water (blood ) is trickling to the crops (her lungs) through the irrigation pipe ( her pulmonary artery ) to water the plant just enough to sustain it for each day . She is slowly suffocating . Oxygen will help her minimally at best. Her lungs are just too damaged to accept the oxygen . We had started Sildenafil 9 months ago with the hope that it would help to dilate her lungs so she could breath better. She is now on the maximum dose. If this has not helped then she may only have a few more months or possibly by miracle a few years if she does not get any more colds . She will have another heart Catherization in September to give us a better reading on her lungs. Right now we need to pray for her pulmonary hypertension to improve . Without surgery there is no cure for this and her lungs have sustained permanent damage from the hypertension . The cure - A MIRACLE !

Teresa needed life saving surgery the first few months after birth to save her heart and lungs . She received pulmonary banding at almost one year of age and it was already too late . Her lungs were already damaged and the band was not put on tight enough causing the damage to continue.
What is so sad is that Doctors from the United States are always traveling to China for medical conferences to teach on the latest improvements in health care.
Teresa's Doctor at CHOP just returned from a 2 week conference in China , visiting BJ., Shanghai, Wuhan , Nanning and Guangzhou Hospitals... NOT ONE ORPHAN had life saving surgery during this time ! Lucy's Urologist at Hopkins is the worlds best pediatric urologist. He went to China last year to operate on a government officials son in Shanghai. Wined , dined , golfed for 2 weeks and only the government officials son was operated on ... NOT ONE ORPHAN ! Why ? Why aren't they aware of this tremendous need to help the orphans also?
Well, I said this to Teresa's Doctor yesterday and as we were leaving Ed said I probably should not have said that , but you know what , if Teresa had received surgery sooner, her life would have been saved. EVERYONE needs to be aware. They can't just live in their own little world and think someone else will help those in need . They have the ability to save so many lives.

If it is Gods will, my dream is to start "Teresa's Heart Hospital in China" .This would allow for orphans to receive life saving surgery EARLY in life , before irreversible damage is done to their heart and lungs. They would be able to receive the best medical care, not secondary care because they happen to be born orphans.
If anyone would like to help , offer advice or has contacts please just let me know . If this is Gods will it will happen .

A Wish Come True

Thanks to a wonderful organization - The Make A Wish Foundation- , Teresa's wish is coming true.

She wished to be a princess and to meet Belle.
Because of her declining health, her wish has been expedited and she will be going to Disney World at the end of June .
We are so grateful to The Make a Wish org. because with out them we would have never been able to take her to Disney World.

Trips to Disney use to be a family vacation we would go on with our sons when they were young. Since adopting the girls it has become a treasured vacation of the past , something we can no longer afford to do .

We even debated whether or not to go on this trip now but after meeting with The Make A Wish org. , they will cover every part of Teresa's wish . How unbelievable is that .
This will be our first Family vacation with all of our children in over three years. Having all of our children together to celebrate Teresa's Wish was very important.

She will have a "Princess" makeover and a meet and greet with Belle. We have a special lunch planned (for Mom and Teresa) in Cinderellas Castle and we are waiting to see if she can meet the cast of Beauty and The Beast at Disney's Hollywood Studios. She really wants to meet The Beast, Belle and Chip . And look out Gaston , she is going to tell him to leave Belle alone and not to hurt the Beast !

We are a little apprehensive about the heat in Florida and how it will affect Teresa's breathing . So we are going to be very careful and try to keep her in the A/C as much as possible or even the pool . WE are taking her oxygen with us also.

We are praying Teresa will have a wonderful time without any medical emergencies.
We are also praying for Ed's Office to be able sustain the business while he is gone ( this is a huge worry ). The only time he has been off in the last 3 years has been to go to China .


We are going to CHOP on Friday to see if the increase in Teresa's meds. has had any affect on her heart function . We are praying for good news. She is still having episodes where she has great difficulty breathing and becomes very tired .

She can not wait to go to Florida. Every time a plane flies over she looks up and says, " Look they are going to see the princesses , ME TOO!"
She is soooo excited to pack her own suitcase .
All of the girls can not wait!!!!