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 .