Make A Wish

A few days ago we met with The make A Wish organization . I had been putting it off because it seemed like such a sad process to start but we decided we would make Teresa's wish into a happy event to celebrate her life . I want to celebrate Her birth parents for giving her life , the orphanage for finding her the medical care she needed ,The China Care organization for providing her with the best care possible and filling all of her days with love , ASIA (our adoption agency ) for helping us to bring Teresa home , everyone all over the world for praying for her to find a home, Teresa's prayer warriors for covering her in prayer all of the time , Our wonderful community and friends for supporting us and helping us with fund raisers, Our church for unconditional love and support, Father Whatley who gave us the spiritual guidance to follow Gods Will and our children who all have had to make tremendous sacrifices on this journey .

I am not sure where they will send Teresa for her celebration but I know it will be wonderful. She told them she would like to be a princess . This week her favorite princess is Belle. Believe it or not she also told them she LOVES Jennifer Lopez and American Idol . She LOVES watching her every week and continuously comments throughout the entire show on her finger nail polish , lipstick and hair . So funny !

My wish was for her to go to Rome for the Beatification of Pope John Paul II but that some how did not come out of her mouth . Oh well.

Today we also had great news at the cardiologist . Last month she was having a lot of trouble getting over a cold , her oxygen was very low and she had little energy . When we went to the cardiologist last month it was discovered that her tricuspid valve was severely leaking and causing her liver to be very enlarged also.
Now she is doing much better. Her liver has slightly decreased in size , her pulmonary pressure has decreased slightly and her pulmonary gradient has improved ! Her oxygen today was 83 !!!!
Thank You Jesus ! God is Good !

"The will of God will never take you , where the grace of God will not protect you "- Father Whatley .

Tadpoles and Holly

Today Holly came to visit from PA. . She also is a "Princess" like Teresa. Lucy , Gemma and Teresa had a wonderful time meeting Holly and playing together. It is so nice when God opens the door to new friendships!

To all of Teresa's prayer warriors - Thank you for surrounding her in prayer 24/7 for one week ! She had a phenomenal week with her oxygen even reaching 82 for a few days ! The power of PRAYER !!! Thank you Jesus for giving her this past week . What a blessing she is . She is living proof of Gods love and mercy .

Blind Surrender

Do you ever feel like life is so heavy you forget how to smile ?
That's kinda how life is right now . At times having fun seems so frivolous when other things in our life are so heavy and weighing us down .

It is really hard to believe that five years ago our future was so strategically planned with dreams of retirement, vacations and financial freedom . Now are dreams have completely changed . I am happy if we can make it through the day without any medical or financial crisis . Our future is totally dependent on GOD to meet our needs for each day .
Teresa's life is so fragile we have had to find peace in knowing GOD is in control of her life . Blind Surrender...the hardest thing we have ever done.

"To surrender to GOD means that we offer HIM our will , our reason , our life. We do this in pure faith , even if our soul is in darkness. Truly ,trials and suffering are the surest test of blind surrender. "- Mother Teresa

St. Patrick's Day

Lucy came home from school yesterday announcing she was 1/2 Irish . "Really ?" , I said. "Yep, I am 1/2 Chinese , 1/2 American and 1/2 Irish ." She had so much fun celebrating St. Patrick's Day she decided she would become Irish . She loves her family so much , she decided she was 1/2 American . I told her we love her so much that we became 1/2 Chinese too.
No matter how you add it up it equals 100% total HAPPINESS for her !

Teresa wasn't sure what all the green fuss was about. Green isn't one of her favorite colors since there isn't a Princess that wears this color . But she had fun making Irish Soda Bread and eating it even if it was green .

8 Months Home

Today was the 8 month mark of Teresa being HOME !!!!
Today she discovered worms and spring flowers . She loved the way the worm wiggled on her hand . "It tickles ,It Tickles "
She had a wonderful day . She was feeling great and loved playing outside discovering new things .

Marshmallow Fun!

Another first for Teresa , roasting marshmallows ! She loved it !

What A Good Week !

Teresa had a really good week ! No cold , no runny nose and no sneezing !
She also seemed to have more energy and was not quite so blue . Her oxygen saturation was still in the 70's , but she did not require oxygen all week !!!!!!
Thank you for continuing to PRAY for Teresa !!!!

Boston

Yesterday I spoke to a wonderfully caring Doctor from Boston . He took the time to review Teresa's medical records with his colleagues and discuss her options . We spoke at length about Teresa's heart and lungs and unfortunately he agreed with Hopkins , CHOP and The Mayo Clinic. She is inoperable, her prognosis is not good, just a matter of time . We discussed what will happen and how to handle it . I can't tell you how disappointing this past week has been . Teresa is so full of life right now and she just LOVES everything and everybody and to think that she will just keep deteriorating is so sad . He also agreed that he did not recommend trying a heart/lung transplant because the success in children is EXTREMELY low .
For now she continues to think she is well ,nothing is wrong and life is wonderful .

We will continue to pray for her "Miracle".
My fear is :

The Miracle will not be the CURE... her life will be the Miracle .

We have not given up hope , just very sad.

The Writing on the Wall !

If you are going to draw on the wall, it is a good idea not to write your name under it ! Gemma was BUSTED!!! She was not a happy camper .

This week Teresa had more good days than bad . Her oxygen is still low but she has managed to play (oops), I mean BE a princess still ! She is so happy and loving life !

We have submitted her medical reports to several more Hospitals with the hope of still finding a "Miracle " cure somewhere. It's not that we don't believe the other Doctors prognosis, we just want to be sure there isn't a miracle cure somewhere. The response we keep getting is she is inoperable . Her lungs are severely, irreversibly damaged and she can not have surgery on her heart to repair the several major defects.
Her tricuspid valve is now severely leaking , her oxygen is very low and she is still retaining fluid , and has a very enlarged liver .
It kills me to think this could have ALL been avoided had she been adopted sooner. Before her lungs became so damaged , she would have been able to have the surgery for her heart to save her life . Why ?!?!?!

Transfusion day

Today Gemma had her blood transfusion . For the second month in a row she was able to make it 4 weeks in between transfusions . ( Yeah !!!!) . This is great news for her since she will require blood transfusions for the rest of her life . Her ferritin levels were still very high so her daily infusion of Deferoxamine will be increased . Her Doctor discussed the possibility of her needing a bone marrow transplant in the future. The transplant would ideally have to come from a biological family member as this would greatly lower the possibility of major complications . This most likely will never be a possibility for her because finding her biological family in China is extremely difficult if not impossible . So for right now the plan is to continue on with the blood transfusions every 4 weeks and hopefully get her ferritin down before her liver becomes much more damaged .

Teresa update - she had a very good day today and seemed to have more energy . She received 2 packages today from 2 more amazing friends. Thank you so much ! You made her smile all day !!!!

The girls are having so much fun tracking Teresa's prayer friends form all over the world . She almost has someone praying for her from every continent ! WOW

Thank you !!!!

New Found Friends

Teresa woke up this morning and was feeling a lot better. She looked so much better than she did Sunday .

Today we met an amazing family from PA . They have been following Teresa's journey on our blog. After going to Hopkins for doctors appointments they stopped by to meet Teresa and give her some " Goodies". Teresa was so excited all morning waiting for them to arrive.

Thank you Amy , you ,Sam and Hope brightened Teresa's day ! Your generosity was greatly appreciated ! Teresa has not let go of Cinderella ALL day .

One of the greatest gifts we have received on this journey with Teresa is AMAZING friends ! Their generosity , love and support for Teresa has helped us as we carry this tremendous pain in our hearts .

Thank you D'Ann and Amy ! You are angels sent from God .

Prayer Weekend

Thank you everyone for praying for Teresa this weekend !
This past week has been very sad for us . Finding out Wednesday that Teresa's heart is failing even more has been very difficult. I feel even more driven now to fill every minute of every day with love and happiness for her .
This weekend in church her name was mentioned in the prayer for the sick . She heard her name called and she turned and looked at me with a very puzzled expression and said , " Why are they praying for me , I am not sick ". She does not know or feel she is sick . When I look at her face I can see it in her eyes how much she has deteriorated . She looks so tired .

Even though this past week has been hard for us , she keeps her little "Princess " smile going . Today she was Cinderella.

Not Good News

We are admitted , we are going home, we are admitted , we are going home . We are finally home ! Not a good day .


This morning we went to see Teresa's cardiologist at Hopkins. For the past 3 weeks she has been holding onto a cold that would not go away . I could tell something was wrong , she just hasn't been herself . The echo revealed her already severely damaged Tricuspid valve was leaking even (dangerously )more. This is causing damage to her liver and fluid retention in her face. After a VERY long day of testing it was decided we would go home and closely monitor her and speak again in the morning to go over the blood work . She will start 2 new medicines , one to eliminate excess fluid and one to help her heart function better. Not the news we had hoped for .

To all of Teresa's prayer warrior friends , people from all over the world that pray continuously for her , people we have never met but feel called to pray for her , THANK YOU !!! Your prayers and words of wisdom and love mean so much to us . Your prayers mean more to us than you will ever know . Thank You !

Snow Day

Teresa wanted so badly to go out and play in the snow today ... but she wasn't feeling too well . She unfortunately needed oxygen most of the day . We are going to the Doctor tomorrow .

Monday

After I took this photo and showed it to her she was mad because her hair did not look like a "Princess" . This is how puffy her little face and eyes have been , but she still LOVES to smile for the camera !

The kids were off of school today and I was hoping to take them to the park but the weather has turned very cold and we are now expecting snow . Only 4 more weeks until spring .

Teresa is still having trouble from this cold that won't go away . Her eyes and face are puffy and she is starting to cough a lot . This morning her oxygen level was again in the upper 60's . We will go back to see her cardiologist on Wed. . We are trying to stay positive but when I look at pictures of her from just a few months ago and then now , she looks so different to me . Her energy level has also slowed down . She stops often throughout the day to lay down and rest.

We are still trying to squeeze every ounce of happiness into every day for her . She tries so hard to remain a Princess even when she is not feeling well . Her favorite princess this week is Cinderella .

The Day Of Prayer for Teresa on Sunday Feb. 27th. has turned into The Weekend of Prayer and fasting for Teresa. We would be VERY grateful to anyone that would like to take a few minutes this weekend and storm heavens door for her .

Happy Chinese New Year !

This past week was so busy ! The girls had 6 Doctor's appointments in 5 days. I think that was a new record for us . Everyone is doing great although Teresa is still holding on to this cold that won't go away . She has had it for several weeks now and it is starting to make her oxygen level drop into the upper 60's almost everyday now. She's needed oxygen several times over the past week and has to take many breaks through out the day to catch her breath . She also looks to me like she is retaining fluid , her eyes and face are a little puffy . If this doesn't improve soon , we will be headed back to the Doctor.

Today we celebrated Chinese New Year with our local FCC group . The girls really enjoy this every year . This was the first time for Teresa and she loved the day . She liked everything except The Monkey King . She wore her Chinese "Princess Dress" as she called it .

Thank you for continuing to Pray for Teresa ! On Sunday Feb. 28th. We will have a day of fasting for Teresa . Thank you Bridget for this great idea . Please join us in this day of prayer for Teresa .

7 Months !

Seven months ago today we adopted a "PRINCESS" in China !!!!!
Oh how our life has changed over the past 7 months .This little "Princess" has taught us so much about life. I have to be honest and say ,that some of the things we have experienced in the past 7 months I could have done with out ( well maybe a lot of things ) . This journey we are on has been very difficult at times but it is the one God has set before us to follow . We have been so blessed to have the privilege to love this "Little Princess".

"To Do List "

Today we crossed off one more thing on our "To Do List " for Teresa . This is a long list of normal childhood experiences i would like for Teresa to have the chance to do. It has things on it from going to the zoo to going to Disney World, from making a Build A Bear to riding a bike . So today we went to Build a Bear for Teresa to experience the fun of creating a new friend to love . Lucy generously offered to give Teresa her Christmas money to help pay for it . She really loves Teresa and couldn't wait to help her.

Teresa picked a white bear with pink and red hearts . She named her "Princess Hope". The most exciting part of the day for her was picking out the SHOES. She LOVES shoes . She is really starting to have an obsession with shoes.

Last week while we were at Sinai Hospital having Emilia's Cast removed , she commented on the Child Life specialists shoes as she came into our room. "Mommy I lova her shoes" . Yesterday while we were at Kennedy Krieger for Gemma's Speech class she noticed EVERYONES shoes . As we walked into the elevator there was a woman standing there with purple sparkly shoes. Teresa started jumping up and down saying" I lova her shoes " . The woman thought this was hysterical and asked her if she would like to touch them . Then today at Church as we were leaving ( in the quietest voice she could contain ) she said " Mommy come here I have to show you something " . She led me back up to the front of the Church where an older woman was kneeling and praying . As quiet as she could she said "Look at her shoes ". They were gold. The woman stopped praying and turned and looked at Teresa to see who was interrupting her prayers. I had to explain to her that she was in love with her shoes. This woman was so kind to her . She told Teresa "Thank You " and that she also loved Teresa's shoes .

I am getting a little afraid of going in public places now for fear of what she might say if she doesn't like someones shoes. She only gets to see me in Tennis Shoes.
She keeps me smiling all day long with her funny comments.

Emilia's NEW leg

For the first time in 12 months Emilia is free from all casts,braces and external fixator devices !!!!

It was a long year but so worth the wait. She never complained about the pain or not being able to run and play . Her only request was to have a pair of sparkly shoes and to be able to ride her bike .

In a few years she will have her right leg lengthened again. ( this leg will never grow). Her next surgery on her left leg will be in a few months. This leg was totally rebuilt 2 years ago with the ability to bend at the knee. Over the past couple of years it has started to lock up and can no longer bend. This surgery will be a major one requiring a 7 day hospital stay with intense PT 5 days a week for 4 months and 3 hours of PT at home to keep the knee flexible . We would like to wait until Mayzie (Emilia's Service Dog )comes home to have this surgery because she will be able to help Emilia with the PT . She will also be a huge emotional support for her and a big distraction while at PT. Dr. Standard assured Emilia that after this surgery she would definitely be able to ride her bike ! That is all she had to hear , she can not wait !

So now the problem is trying to find the right time to fit this surgery in to an already very hectic schedule . We would also need to be able to afford a full time babysitter for a few weeks who would feel comfortable taking care of Teresa while I was in and out of the hospital with Emilia. I have not left Teresa with a sitter for longer than a few hours . I don't feel comfortable leaving her for long periods of time because her health is so fragile and she can deteriorate rapidly .

Praying for God to guide us in the right direction .