Gaston's Shoes

It's always nice to have your best friend with you !

Today Gemma had her blood transfusion . She had a great month but unfortunately her hemoglobin dropped too low and she will have to go back to having her transfusions every 3 weeks from now on . Her body could not handle the 4 week schedule. Her ferritin was also at dangerously high levels .
We met with the head of Pediatric Hematology at Hopkins ( for the first time, we usually see another Doctor but he happened to be on call today ) and he discussed her best options.
He asked if we had considered a bone marrow transplant . After explaining her adoption to him and the very remote chance of even finding a matching biological donor , he then switched to plan B.
She will have to stay on the 3 week transfusion schedule, increase her daily infusion (for chelation ) from 5 days a week to 7 , and possibly have a spleenectomy if she does not show improvement.

If any one knows of a way to find birth parents or biological family members of children adopted from China please email me . Right now Gemma is doing great and not in a crisis but the continual blood transfusions and high ferritin levels over time damage the heart , liver and spleen . Gemma has already developed some liver damage .


Last week the girls and I were sitting on the front porch waiting for Gemma's weekly infusion medicine to be delivered. As the delivery man came up to the porch Teresa looked down at his shoes ( Like she does with EVERYONE ) . I was a little afraid of what was going to come out of her mouth next. " Oh Mommy I luva his shoes " . He started laughing and thought this was quite amusing . He had on old black work boots . I don't think he had ever had a positive comment about his shoes before .

After he left I asked her why she liked his boots so much . " Because they are just like Gaston's !"

Her favorite movie and Princess are Beauty and The Beast . Even though she did not like Gaston because he was so mean to Belle , she loved his shoes .

Teresa had another great week . She had a cold but it only lasted a few days. I am amazed at how well she responds to every little bug that comes her way . I become very nervous every time she sneezes because it always turns into a cold and the Doctors have explained to us how dangerous an infection could potentially damage her already fragile health.
Thank you everyone for continually praying for Teressa . We are so blessed to have so many fantastic caring people always lifting her up in prayer .

" My Jesus"

Two days after coming home from China with Teresa , we stopped by our Church on our way to Hopkins for Teresa to meet Father Whatley .

She was still speaking Mandarin and understood very little English but she really seemed to make a connection with Father Whatley.
Several weeks later we started taking Teresa with us to mass on Sundays. On Sunday mornings she would become very excited about going to church and seeing Jesus. She loves to sing the Alleluia . I don't remember exactly when but one particular Sunday as I was holding her during Mass, she took her hand and turned my head to the altar and said , " Look Mom , I see my Jesus". Thinking she was looking at Jesus on the cross or the stained glass windows, I said " I know isn't that a beautiful picture of Jesus". To which she replied, " NO , I see MY Jesus up there ",pointing to Father Whatley . I explained to her that was Father Whatley and he was Jesus' friend who helped him here on earth . She became a little MAD and said " NO , HE is MY Jesus!"

Father Whatley was so instrumental in helping us to bring Teresa home . His spiritual guidance is what lead us to follow through with Gods will when we were so unsure of how we would financially pay for Teressa's adoption or medical bills. We were unsure of how to care for a child so ill and how to prepare our other children for her severe medical condition .

As we walked up to communion on Good Friday , she was whispering to herself, " I am going to see my Jesus, I am going to see my Jesus". As we came closer to Father Whatley , it turned to " Hi Jesus , Hi Jesus " and lots of waiving at him!

Father Whatley was the first person Teresa met after coming home from China . I know she calls him " Her Jesus", because she can see Jesus in him .

I hope everyone had as wonderful Easter Holiday . We were very blessed to have all of our children home with us for the holiday .

9 months , Birthdays , Easter Eggs ,Engagements...

One week through Teresa's eye's !

D.C. Cupcakes

After 1 1/2 days spent in the bank, at the MVA and on the phone canceling everything in our life ,all from one persons evil act , we decided to still go to D.C .Cupcakes . Thank you to Grandpop for treating the girls to this day !

This person I am sure has no idea how drastically he has effected our life . Besides from the things that were stolen , he has caused a lot of fear in 2 of the girls causing problems with sleeping and a fear of someone stealing them .

So today we decided to do something fun . We went to D.C. Cupcakes and were hoping to meet Sopie and Katherine but they were in L.A. taping for their show . The girls had a great time tasting all of the different flavors. Teresa loved it ! As we turned to leave I caught Teresa eating sprinkles off the floor ( Yuk) . She was in cupcake heaven .

The Good /The Bad

The good news is Teresa had another great week . She is feeling so well and loving spring time. We seem to have made it through the winter with only one major hospitalization and a few close calls. She did so much better than any of us thought possible . When her cardiologist explained to us at the beginning of winter all the possibilities that could happen over the winter flu months , we were all afraid she might not make it through the winter ... BUT she did !!!!! We are now into spring Yeah !!! Thank you prayer warriors !!! You carried her through the winter . We are eternally grateful to you all !

The other GREAT news is ... we have another wonderful daughter in law ( well almost )!
Paul proposed to Meghan last night ! We love Meghan ! She has been Paul's best friend since high school . She is such a sweet, caring and nice girl. They do not plan on getting married for a few more years because Paul would like to finish medical school and Meghan would like to finish PT school first . We are so happy for the two of them .

The bad news ... My car was broken into and my purse was stolen . Even though it will be a pain to replace my drivers license , bank card , broken window ... I had all of Teresa's medical records in my purse to be sent to Pitt. for a second opinion . I can still send them , it will just take me some time to recopy them all.
It is very disheartening when you work so hard and it is taken away so fast by someone who doesn't care at all. What little money we had saved for Grace, Eddy and Mary's Birthday this month was taken also .
I know , I should not have left my purse in the car , believe me , I have learned my lesson !

Cherry Blossom Festival

Teresa is having another wonderful week . She looks great and has so much energy .
For someone who's oxygen is between 75-80 , I am amazed at how well she functions on a daily basis . She does not want to miss anything !

Living so close to DC. I have always wanted to see The Cherry Blossom Festival but have never gotten around to it . These past 8 months with Teresa we have tried to let her experience everything possible, so we decided since she was feeling so well and the weather was suppose to be beautiful we would go .

She loved all of the sites and had a fantastic time making her own little kite to fly !

We stopped at DC. cupcakes on the way home . The girls were so excited ... until we drove by and saw the enormous line, over a 2 hour wait . Maybe next time .

The China Care News letter

Here is the link for the China Care Spring News Letter with an update of Teresa in it .

http://www.chinacare.org/files/newsletters/ChinaCareNewsletter_Spring2011.pdf

Teresa's Sleep Study

Last night Teresa had her sleep study to make sure her oxygen level was not dropping too low while she sleeps. I explained to her it would be like a sticker party with stickers everywhere . At first she thought wow this is going to be fun , but her opinion quickly changed as you can see from the photo. She did great though and did not cry or complain .
Waiting for the results ...

Happy Birthday Alex !

Yesterday was Alex's 20th. Birthday ! We celebrated with our Chinese candle (blow torch ) we bought while in China . Alex had to move back home from Alabama a few weeks ago due to no fault of his own . Because of our financial situation we could not afford the tuition and he could not afford to graduate $ 100,000.00 in debt. He loved the school , his classes , new friends and he even joined a fraternity . He was very disappointed .
So now he is working full time saving his money and will return to Towson in the fall. It is what it is and I believe everything happens for a reason .
Alex has always been a great son . While we were in China adopting Teresa he took care of Mary , Emilia and Gemma . He cooked, cleaned, took Gemma for her blood transfusions and made sure Emilia's leg did not get infected or have any complications. He was so responsible we had complete trust in him . His goal is to be an Orthopedic Surgeon . After seeing Emilia's legs and how mangled they were when she was adopted he has decided to make this the field he will major in . I know he will make a fantastic , caring Doctor .

Lucy started not feeling well yesterday . This morning her lungs were making all kinds of snap , crackle and pop noises. She has pneumonia in her left lobe and the right middle lobe has partially collapsed. So back on antibiotics , prednisone, albuterol, flovent and Tylenol. This evening she started feeling a little bit better.
Just hoping Teresa does not get this !
So far this week Teresa is feeling great . She has had a few times during the week when her oxygen dropped below 75 and she required the use of oxygen but for the most part she is doing fantastic .

Thank you for continuing to keep her in your prayers. Your Prayers have carried her through the winter .

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 .