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!!!!

Princess Party

This week a group of amazing seniors from Mt. De Sales took time out of their busy senior week activities and had a "Princess PARTY " FOR Teresa and Gemma. These young ladies came dressed in their favorite princess attire. They read the girls books , let the girls put make up on them and talked about what it was like being a "Princess".
The girls loved it !
Thank you Mary for organizing this magical day ! We are so blessed by your friendship.

Lucy received great news this week . The surgery she had a few months ago on her bladder and kidney was a success and she will not require any further treatment.!!!

The photos are of our "Happy Times " over the past few weeks, Grandpops and Mary's Birthday , the frogs turning to tadpoles , feeding the horses and being silly with bubbles.
Last night Tim Mcgraw sang "Live Like You were Dieing" on American Idol. This made me think what would I do differently ? Teresa lives like that everyday except she doesn't know she is dieing , to her it is just living and living with pure happiness for everything . Over the past year this is the biggest lesson our family has learned from Teresa. To celebrate every minute of every day as if it were your last and to be grateful for EVERYTHING .

Just OK

Teresa is having an OK week . Since coming home from the hospital she has been VERY tired. She is sleeping 15 hours every night and taking a nap every afternoon. I don't feel the increase in her medicine has had any affect yet. We will go back to CHOP next Friday to see.

This afternoon I heard back from Childrens Hospital of Pittsburgh . They were reviewing Teresa's medical information to see if they could offer a different diagnosis or alternate treatment. Unfortunately they also agreed with Hopkins, CHOP , Boston and Mayo.

We are trying to stay positive but at times it seems impossible. I keep wondering what is Gods plan for her life. So many miracles have happened through Teresa already . So many people have emailed me telling how God has moved their hearts to adopt, how Teresa has touched their lives, how they have returned to God through Teresa, how she has given their lives new meaning , how she has given them faith ... She has touched so many lives. I am so grateful for all of these miracles but I still want Teresas' miracle. I want her heart and lungs to be healed. If this is selfish well than I guess I am being selfish . I know we are not made for this world, but I need more time with her in this world .

(The photos are of Teresa in Mary's First Communion dress. She said she is not taking it off until she can marry Jesus. She has given up ALL of her princess dresses for this ONE ! Even Belle.)

We are Home

Teresa came home on Monday evening. She is slowly gaining her energy back and feeling better. She still becomes very winded when she tries to keep up with the other girls and requires her oxygen . Unfortunately the Doctors feel this is the progression of her heart/lung disease. Her heart is having trouble keeping up with her body (mostly her brain ,she thinks she can do ANYTHING). Painfully her disease is deteriorating faster than we expected. The good news is she does not feel like her life is slipping away . She was so happy to be home and playing "Princess" with her best friend , Gemma . Poor Gemma always is the Beast because Teresa insists that she is Belle. Today after school Teresa met Gemma at the door dressed in Lucy's First Communion Vail. She couldn't wait to tell her that she was going to marry Jesus!

I know I say this all the time but having Teresa in our lives has been an unbelievable experience .
When I walked through the door of the China Care Home 10 months ago and saw a tiny beautiful little girl with a crooked smile running up to me to give me a hug and saying "Mama" I knew I was in love. Meeting Teresa was a humbling experience. She has blessed our families lives in so many unbelievable ways. She is a very magical little girl . Our love and bonding with each other has grown so deep over the past 10 months . I can not imagine there will come a time when she may not be with us .
Recently 2 people said to me that they had not wanted to meet Teresa . They felt it would be too painful to know her and then lose her . I have to say this is what we too had thought before we said "Yes" to Gods Will and adopted her . How do you prepare to love someone with all of your heart and at the same time prepare to lose them . Meeting Teresa made it very easy for us . She is a very sweet, kind , sassy, strong willed ,determined loving little soul all wrapped up in a four year old little girls body .
Our families lives have been so enriched by having met and loved Teresa. She embraces life everyday no matter what the circumstances . She can find happiness everywhere and in everything from being in a hospital playing Doctor , wearing her oxygen and using the cord as a microphone to sing into ,giving high "fins" with her finny fin (high fives,she calls her small hand her finny fin ) to just coloring a picture of "her Family", she is so happy .

Thank you everyone for praying for our sweet girl.

Sunday

Last night Teresa had a little set back . Her blood pressure and oxygen were dropping too low so her evening dose of medicine had to be lowered.
This morning she did much better. Her blood pressure was stable all day and her sats even reached 82 (with oxygen).
This is good news and we hope she will be able to reach the maximum dose with out any further side affects.
Her liver is also being affected by her heart causing it to become enlarged. The pressure in her heart and lungs are so high the blood from her liver can not return and is backing up in this organ .

Today Lucy and Mary had their ballet recital so Alex came to the hospital to stay with Teresa while Ed and I ran to the recital.
Sitting at the recital all I could do was worry about Teresa in the hospital , even though I knew she was stable and Alex was texting me every 30 minutes with an update.
It's hard to balance the feelings of happiness while at the same time the worry for another childs' life.
Life goes on even when their is pain and suffering in it.
Please keep in your prayers the little girl in the room next to Teresa. She is Gemma's friend from the infusion clinic. She is having a very difficult time right now as she prepares for an upcoming surgery .

Teresa really seemed to enjoy some one on one time today with Alex. He said she talked his ear off!

Hospital update

Thank you for praying for Teresa. She is feeling much better today .She is on day 2 of her meds. being increased . So far she is tolerating it very well with no side effects. By Monday she will be at the maximum dose and if all goes well we will come home.
The hope is to try and slow the severe regurgitation and help her heart function better. The sad news is she is now at severe regurgitation of her tricuspid valve , 10 months ago it was only mild regurgitation . The options for her if the meds. do not work are not great .
She is still requiring oxygen to keep her sats. above 75. We are hoping to get her back to her base line without the use of oxygen but the Doctors think it may be something she requires more often now.
She still has her spunky sweet personality through it all. She helps the Doctors and nurses with all the tests and procedures. They are amazed at how well she cooperates with everything that is done to her. She has found happiness even in the hospital. She carries her pink Mickey purse with her everywhere filled with her stash of goodies to share with everyone . Her light continues to shine .

10 months home / hospital

Teresa was admitted to the hospital Thursday night in further heart failure. She was having trouble breathing and Very tired .
all her meds are being increased and monitored closely . Hopefully come home Monday . please pray for the meds to stop the severe tricuspid regurgitation .

Fortune Cookie

For Mothers Day we ordered Chinese food.
Guess what my fortune cookie said...

YOU WILL SOON WITNESS A MIRACLE !!!!!

The Blog

The Blog was originally started for our family and friends to follow our journey to China for Teresa. After coming home we decided to keep the blog as a way for everyone to keep updated on Teresa's health instead of switching to a Caring Bridge Site. I have tried to keep the blog as a way of looking at life through Teresa's eyes ( how she sees it ) . At times our life with all of our children has gotten mingled into the blog ( some more than others ). So as a way to keep everyone updated , I will share a little of what is going on with all of the kids.

Eddy and Laura just recently celebrated their one year Anniversary . They both have wonderful jobs and are very happy . They added two kittens to their lives who are very playful .
Paul and Meghan recently became engaged . They have set their wedding date for two years. Paul will finish medical school in two years and Meghan will finish PT school as well . They are loving life in the South (hopefully not too much , because I really want them to come back home when they graduate ).
Alex is back living at home and working . He will return to a local college in the fall and resume his pre- med studies . In the mean time he is working full time and volunteering at a local hospital in the orthopedic dept. The girls are so happy to have him home (me too !). He is such a big help .
Grace is really having fun playing lacrosse this year . She made the A team in her age group and is so happy . She LOVES lacrosse . Her second favorite thing is horse back riding . When she grows up she has always said she wanted to be a Veterinarian and have a whole barn full of horses. She has been riding since she was 3 years old .The one thing she does not like is having her photo taken ( as I am sure you can see from some of the photos). She has a very sweet personality but the teenage attitude sometimes gets the best of her .
Mary is enjoying Girl Scouts and Ballet this year . She has such a free personality that she goes with the flow of life ,nothing bothers her . She will have surgery on her cleft pallate this summer with a bone graft from her hip. Her nose will also be corrected . Surprisingly to me , she is looking forward to this surgery . She really wants to have a nose that looks normal she said . I think she is beautiful just the way she is .
Lucy is enjoying Girl Scouts and Ballet too. Lucy just recently made her First Holy Communion and is so proud . She loves school and is the social butterfly, friends with everyone . Lucy recently had surgery on her bladder and we will find out in a few weeks if it was a success . If not she will have a more invasive surgery to repair it . As she grows her health is becoming better with less problems from her lungs.
Emilia is doing so well after having the External Fixator removed form her leg . Her legs are now the same length. She is so happy to run and play like the other girls . She has even figured out a way to ride a bike ( her legs do not bend ). She has the most amazing personality ,she loves to help others . She has never complained about her legs or the pain . She has come so far from when we first a adopted her , she could not walk . Now she doesn't let anything stop her .
Gemma is our little Buddha Belly . She loves to eat !She also loves going to school . She has made so much progress with her speech this year . It is still difficult to understand her when she speaks in sentences but the funny thing is she uses pantomime to communicate . We have taught her a few signs but she prefers to make up her own . She is a go with the flow kinda girl , laid back and easy going . Her health has been a challenge this past year (she has Beta Thallasemia Major ) but we are confident her Doctors will have everything under control soon .
Teresa is a little princess with a very sassy personality .She loves to be in charge. She loves life and has so much fun experiencing everything . She has the most amazing personality that will leave you in awe. Having Teresa has definitely been a huge challenge on all levels but I cannot imagine our life without her . She has filled a place in my heart that I did not know I was missing . She has taught me so much that I did not know I needed to learn . She has shown me how to love unselfishly.

Ed and I have been married for almost 28 years, I married my best friend . If you had asked me then if I would have this many children , I probably would have laughed and said No way ! But I am so glad that God new exactly what I needed and was in control the whole time .

What a weekend !

"I LUVA his shoes "





We had a very busy weekend . Friday Gemma had her blood transfusion , Saturday Lucy had her First Holy Communion and today (Sunday ) we participated in Brittany's Hope Walk Of Love in PA .

Gemma is feeling much better now that her Hemaglobin has increased to a safe level .
Teresa was feeling very tired on Saturday but today she was much better .
Lucy was soooo excited to make her first communion . She said she feels VERY Holy now. It was a very special day for her . Teresa keeps asking when it will be her turn . Teresa was upset because she could not wear her wedding gown and marry Jesus ( this was her interpretation of a first communion ).

The walk of love was an amazing day . Brittany's Hope is a wonderful organization that gives adoption grants to special needs orphans around the world . Emilia was a recipient of a BH grant when we adopted her . The grant helps to cover a portion of the enormous adoption expenses . Last year Emilia was one of the poster children for the organization and this year the girls had the privilege of holding the Chinese flag ( representing China ) for the walk . They were all so proud !
We also had time to catch up with some dear friends we had met through our adoptions. Kelly R. Is an amazing women getting ready to adopt 2 more special needs sons from
China . We met for the first time a very special person who was so helpful in having Teresa's medical information reviewed in America and getting her the medical care she needed while in China . It was only by chance that we ran into each other but I think it was divine intervention . She is a very special person who also has a daughter with Hypoplastic Left Heart Syndrome . We shared lots of information and I enjoyed hearing of how she knew Teresa In China .

If you would like an organization to support , please consider www.brittanyshope.org

Tomorrow is the start of another very busy week . We will head back to Sinai Hospital for Emilia's Legs to be checked . We are hopeful the bones are healing well with no complications.

I am so grateful to have these children God has blessed us with . Even though their medical care seems so enormous at times, it is a very small sacrifice to make. Just to be able to see them smile and be filled with so much happiness makes it all worth it .