Our Place Called Home

Climbing for 19 months...

2012-02-18T20:24:00.005-05:00

For the past 19 months we have been climbing a mountain that we were told would NEVER move. Seven of the BEST Pediatric Cardiology Hospitals, ALL told us the same thing... Teresa was inoperable, terminal,very little hope for a long future , just keep her happy and comfortable . For us this was NEVER an option . We had complete Faith that God, could and would, in HIS time move this mountain .

NEXT MONTH WE ARE MEETING WITH THE TRANSPLANT TEAM !!!!!!

19 months ago we were told Teresa's lungs would NEVER be able to accept a heart transplant because they were irreversibly damaged and her pulmonary pressure was EXTREMELY high . She is now almost to the point of being able to survive just a heart transplant.

Dr. H was very adamant that she is still walking a very fine tight rope . An infection of any type could change the plan quite drastically .

If you could please join us in praying for Gods Will to be glorified through Teresa. That she will stay free from ALL viruses and infections .That her lungs will continue to improve and her heart will stay strong .
Her will to live and experience everything with such enormous determination has given us much needed strength on this climb .

Thank you EVERYONE for Praying continuously for Teresa.!!!!

Gifts

2012-02-13T18:16:00.009-05:00

Today we received two wonderful gifts.

A friend who lives in California made two beautiful quilts for Gemma and Teresa. Teresa's quilt has many hearts since she is in many peoples hearts. It is also filled with symbolism such as bamboo for long life and her fortune cookie. She also has religious fabric and lots of LOVES.

Miss Gemma "Loves" quilt has a lot of LOVES in it and many different animals.

The girls are snuggled up one the couch with their new quilts having fun looking at all the different fabrics.
Thank you Pattie ! This was such a heart felt gift that was made with love!

The second gift we received today was from The China Care/Half The Sky Home . It is a CD of all the photos of Teresa from May 2007- July 2010, and all the News letters that Teresa was in . These gifts are priceless to us . The photos show Teresa from 5 months old until the day we came to China to adopt her. My favorite photo is of her sitting by the door in her pink dress waiting for us to arrive. She was so excited. Some of the photos show how sick she was when she first arrived in Beijing. In almost all of the photos she is smiling . Her magical personality was always shining .
Teresa looked at all 200 photos with me. Her memory amazes me. She could remember everyone and everything that was happening . Her favorite ones are of her and Min Min ( they are outside playing and put flowers behind their ears). She also loves the ones with her Care giver in the China Care Home .

These two "Gifts" brought us so much happiness today .

Gung Hay Fat Choy !

2012-02-11T18:21:00.005-05:00

Happy Chinese New Year !

Our local FCC really knows how to throw a fantastic Chinese New Year Party !

( This song was one of Teresa's favorites. When she first came home from China she would sing it all the time .)

Waiting

2012-02-05T17:13:00.004-05:00

It seems like waiting is something we do a lot of these day . Waiting for surgeries, Doctors appointments , physical healing ... This past week has us waiting for biopsy results.

A few weeks ago , Lucy started with severe abdominal pain and vomiting again . It was exactly the same as in November that ended her up in the hospital . This time she was seen by a GI Doctor . Last week she had a colonoscopy and Endoscopy . She had 2 areas of "Concern". The Doctor unfortunately would not reveal any further information and was adamant on waiting for the biopsy results to come back before he would discuss it further. So we are waiting and praying . Patience is definitely not one of my attributes . The results should be back in 7- 10 days.

Today Emilia had another visit from Mayzie. Annabelle(AKA "Puppy Lovins") has made great progress. She no longer tries to kill Mayzie. We have been implementing Cesar Milans (AKA The Dog Whisper)techniques. Annabelle no longer is the "Pack Leader", I am . She is a completely different dog . She accepted Mayzie without any incident and quickly became best friends. So happy for this !
Mayzie has been such a blessing for Emilia. She is a much more self confident child. She has learned all the commands and is so proud of "Her Dog".

Teresa, she is still using her oxygen during the day . She seems to be very blue and winded a lot . We return to CHOP on Feb. 17 . I know the Doctors say her lungs are slowly healing but it is very difficult to believe this when she seems so tired , out of breath and blue all the time . One thing is for sure , it has definitely not affected her personality . She is still the "Boss" as she likes to be called . One of our favorite sayings each day ( well about 50 times a day ) is "Who is the Boss Teresa?" Slowly , very quietly she answers, "You are Mommy, but can I be the boss when I am a Mommy ?"

Miss Gemma "Love" is doing great. She was able to hold on to her blood for 4 weeks this time. We hope she is trending in the right direction . Her Ferritin levels are still extremely high . We have been trying for 2 years to lower her levels with no avail. She will have another Ferriscan this month to see if her heart and liver have any further damage.( she has this test done once a year along with a liver biopsy).

Thank you for all the prayers for "Our Girls", they definitely are a huge "Blessing " in our lives.

If you could also keep in your prayers Min Min . ( Teresa's friend from The China Care/Half the Sky Home ). She is having surgery on her Heart this week .

P.S. The song is for Teresa. She LOVED the half time show of Madonna . She loves anything that sparkles and she loves to dance. She was quick to point out to me that Madonna was not wearing a skirt but a dress . We watched it 9 times .

Gemma Love

2012-01-29T19:46:00.002-05:00

Gemma has changed her name from Gemma Bartlinski to Gemma Love.

Last week she came home from school with all of her papers signed Gemma Love. When I asked her why the name change , she said " because I Love ,Love. " . Gemma can be the QUEEN of drama but one thing is for sure , she is a LOVE bug. She gives the biggest hugs and kisses . She loves deeply and is quick to give hugs to even new friends. Her little sly smile turns into a belly laugh that captures everyones attention . This name suits her perfectly .

Very optimistic results

2012-01-18T18:21:00.010-05:00

Thank you everyone for your thoughts and prayers for Teresa today . The news is very optimistic. Her heart Cath. results showed improvement in the vasculature of her lungs and her heart function has improved ! We are very happy with these results.
Even though this is Fantastic news ( her lungs are moving in the right direction) she is not to the point of being able to receive a heart transplant ...yet. Dr. H feels Single Ventricle Palliation (A Glenn or Fontan procedure) will not ever be an option for her . He thinks if her lungs continue to show improvement over the next 6-9 months she will then be at the point of being able to survive just a heart transplant. In 9 months she will have another cath. to see if her lungs have improved further or if she has plateaued. For now her meds.will be tweaked a little and she will be watched closely .

We are very hopeful but for now we have to let it be and be patient as God continues to slowly heal her lungs. A year ago we were told her lungs were irreversibly damaged and she most likely would never get to the point of just a heart transplant. Only by God ...

Mayzie

2012-01-17T18:17:00.003-05:00

Guess who came to our house today ?
Mayzie!!!!!
Almost 2 years ago , Emilia was matched with Mayzie by Paws 4 People Foundation . The dogs are trained by inmates at a prison in West Virginia. Emilia and I traveled there for a weekend to meet several dogs . Emilia was introduced to three dogs. The first one came in looked around and showed very little interest in her. The second dog seemed to be afraid of her wheel chair and brace on her leg( she was having her leg lengthened at the time). The third dog (Mayzie) , walked in smelled Emilias chair ,wagged her tail and jumped up on the side of her chair to kiss her . We knew this was a perfect match . For the past 2 years Mayzie was trained to meet Emilia's needs for future surgeries .For almost two years she waited so patiently for Mayzie to graduate . Finally , Mayzie was ready to transition to our family ( No easy feat) . She is not accustomed to being around so many children or another dog (Annabelle) that was trying to attack her. She will slowly start visiting us and slowly become acclimated to our house.
Today's visit went pretty well. Emilia loved learning all her commands and showering Mayzie with love . We are hoping that Mayzie will not only provide Emilia with help while she undergoes several more surgeries on her arms and legs but that she will also serve as a "Bridge" between Emilia and her classmates .
Paws 4 People is a wonderful Foundation that provides service dogs to people with physical and mental disabilities . ( Paws 4 Vets provides dogs to veterans returning from war with physical disabilities or from the stress associated with war).

Tomorrow will be a very important day for Teresa. The results from the heart cath . will hold two paths for Teresa's future .
If you find the time in your day to think of Teresa, could you please whisper a prayer to Jesus...we would be VERY grateful .

Friday The 13th.

2012-01-13T19:28:00.004-05:00

Friday the 13th. turned out to hold good news for Teresa.

I am a little reluctant to post this because I am feeling a bit confused .
Last month while Teresa was in and out of the hospital being treated for further heart failure, fluid retention, low oxygen saturation and low energy , she was seen by 2 different Doctors who were covering for Dr. H while he was on vacation . They were very concerned with the direction that Teresa was headed. They thought that this could possibly be Teresa's new level of normal for her and were not very optimistic.

Today Dr. H was back from vacation and reviewed all of Teresa's reports and tests from last month and tests done today . He was pleasantly optimistic. (His words ). As he explained it to me , her lungs were "wet" because the new meds. were doing their job . Her heart was pumping more blood to her lungs and dilating them more. Today also revealed that her heart function had actually improved from last month and her severe tricuspid regurgitation was almost completely gone . At this point I was sitting there feeling VERY confused and made sure that Alex was paying attention so he could relay all this information to Ed too.

Dr. H feels Teresa is ready for the next step . That is one of three things.
1. Lower her meds. and do nothing ( she can not stay on this high of a dose because it is causing her heart to pump too much blood to her lungs)
2. try to repair her heart.
3. a heart transplant.

The next step is to re cath. her on Wed. and see exactly what her numbers are in her lungs and heart and see how much the meds. have helped. This will give him a better idea on how to proceed.

I am going to wait until wed. when we have further concrete results until I express any type of joy . The highs and lows are just too much and I want actual numbers and not, "well, we feel like this is happening ... " I need more than a feeling .

So for today , she is still on oxygen all the time because her lungs are still wet and her o2 is very low, (she is retaining fluid caused by the meds.) so her lasix is being increased . We will return to CHOP on Wed. morning , have the heart cath. , stay one night and come home on Thursday , hopefully with very concrete fantastic news . Then we will celebrate with great joy . Until then I am remaining cautiously optimistic.

Dreaming...

2012-01-07T23:06:00.010-05:00

I dreamed when we took the huge leap of faith to adopt Teresa that just maybe her medical condition was wrong. I dreamed just maybe she didn't need a heart /lung transplant. Just maybe we would bring her home, love her unconditionally , show her all the joys of having her own family , take her to the best Doctors and Hospitals and they would say , "We can help to fix her broken heart", AND we would all live happily ever after ... But that dream is slowly fading.

For a while it seemed like just maybe, there would be help for her broken heart . Or maybe that is just what we chose to hear. Maybe we did not want to hear the BUT...

Teresa's health has definitely deteriorated over the past month . She now requires oxygen full time and she tires very easily .

Have you ever closed your eyes , prayed for a miracle, dreamed of a miracle , only to wake up and realize that dream has not come true?

We felt we were so prepared , so ready to accept any outcome . As long as we loved her everything would be all right . Whatever was Gods Will we would accept , and we still do , BUT ...

Last week we were advised to prepare an Advanced Directive plan for Teresa. I am not ready to do that . That Is Gods Job. The plan for her life has always been in His hands , not ours.

Someone asked if we would do it all again . Would we have adopted Teresa knowing all the pain and sacrifices . The pain was never hers to carry alone. The sacrifices were ours to carry . And YES, we would have chosen to do it again had we known then what we know now. Teresa would have never known the love of having her own family and we would have missed the joy of seeing life through her eyes even though it came with tremendous sacrifices .

Sometimes Gods Will can only be viewed through tear filled eyes ...

2012

2012-01-03T19:39:00.004-05:00

I have never been so happy to see a year end ! We are praying 2012 will be much more peaceful .

We came home from CHOP late Friday night with Teresa. Grace had been sick for 2 days with uncontrollable diarrhea and severe cramps . By Saturday morning she was VERY sick. I called the Pediatrician and she recommended going right to the ER. She was severely dehydrated and tested positive for Salmonella poisoning . Unbelievable . We made it home late New Years Eve so tired we just went to bed . We just can't seem to get a break . We were in 3 different hospitals in one week . Today Grace was able to slowly start eating again without severe cramping .

Teresa is doing OK.. She is not back to her base line yet and still requires a lot of oxygen . But she is feeling much better . Tomorrow we are meeting with the school to ask for an aid to accompany her while in school . I am hoping this will be an easy process and they will not give us a hard time . We have a letter from her cardiologist requesting the service and also one from the pediatrician .

This Christmas seemed to come and go so fast . I felt like we were trying to catch it but never fully grasping it . We missed doing so many family traditions with the girls because of all the illnesses and trips to the hospital . We totally missed out on making cookies too.

We are praying Teresa will not get salmonella. Bleach and hand sanitizer have become my new best friends.

We will go back to CHOP on January 13th. , hoping Teresa will be able to resume her journey to a new heart .

Good news and Bad News

2011-12-30T13:33:00.003-05:00

The good news is ... we are coming home ! The bad news... the Doctors are not sure if she will reach the point to have a heart transplant because of this set back . Her pulmonary gradient has not improved and her pulmonary pressure is still extremely high . Her meds had to be decreased because of the side affects and this will slow down the process to a heart transplant . She also will be on oxygen continually and her base line has been lowered . She is not headed in the right direction but we hope with time she will be able to turn around .
I know the Doctors outlook is from a medical point of view and they are not very hopeful but our outlook has always been from Gods point of view and we are very hopeful that He will continue to sustain her and if it is His will ...have a miracle for complete healing !
Thank you all for the prayers !!!! We are going home !

Blood Transfusion

2011-12-29T21:32:00.003-05:00

Teresa had a much better day today . The Doctors are still trying to figure out what was causing her hemoglobin to drop . Yesterday she received a blood transfusion and this has given her more energy . She is still having difficulty with her oxygen dropping too low when she walks .
The plan is to try to get her back to her base line and closely monitor her hemoglobin to make sure it does not drop again . She will have several more test done in the morning and then I am hoping we will be home for New Years Eve.

Christmas, Birthday and Back To CHOP

2011-12-27T21:56:00.005-05:00

We unfortunately had to return to CHOP today. Teresa was having too much difficulty keeping her oxygen up and retaining too much fluid .

Trying to figure out what exactly is going on ...

We are so happy that Teresa was able to come home for her Birthday and Christmas. She had a very magical day !

I don't use the D word too often because I think it is used way too frequently , but Teresa REALLY DESERVED to be home for Christmas and Her Birthday. She has been through so much in the past year. This was only the second one she has had with us and we really wanted her to experience it at home . We are so grateful for this !

Praying her lungs and heart function will improve !

CHOP update

2011-12-24T12:38:00.002-05:00

Thank you ALL for praying for Teresa !

Her lungs are slowly improving . She still is requiring oxygen because any movement is causing her oxygen levels to drop into the 50 's. One blood test came back with not so great news . It showed further heart failure . We are praying she will be able to get back to her base line and energy level . Her Doctor would like to keep her a few more days but after explaining to him that tomorrow is her Birthday and she has only celebrated one Christmas at home with her family , he felt she was stable enough to go home this evening . If she shows any signs of struggling we will have to return .

Ed is feeling much better today after having several doses of antibiotics.

So grateful to be coming home for Christmas !!!!!

CHOP

2011-12-23T19:52:00.003-05:00

Christmas has definitely been a challenge for us this year. Teresa has been admitted to CHOP and Ed is home very sick with pneumonia.

Today Teresa had more testing done . She did very poorly on her stress test . She could only walk for one minute and her oxygen dropped to 40. We are waiting for the results
of her blood work to see how well her heart is functioning. She has started IV. meds to try and remove the fluid from her lungs .

Hoping for better news in the morning !

Hokins/CHOP

2011-12-22T19:15:00.003-05:00

We spent the entire day in the Hopkins ER only to have to drive up to Philly in the morning . Teresa has been battling a very minor cold for a few days. Really just a stuffy nose with no fever but it has been causing her oxygen to drop into the upper 50's. So I thought we could just go to Hopkins ( because it is only 15 minutes away as opposed to 2 hours to CHOP )to make sure she was not in any distress. As it turns out one of the tests revealed she is going further into heart failure . Her Doctors at CHOP want to see her right away so as soon as I get everyone on the bus tomorrow , we will head up to CHOP for more testing to see exactly what is going on .

We are praying she will come home Friday night and not miss Christmas or her Birthday at home .

28TH. Anniversary

2011-12-19T22:04:00.002-05:00

On Saturday we celebrated our 28th. Anniversary with ALL of our kids plus one wonderful daughter in law( Laura) , one future daughter in law(Meg) and one hopefully future daughter in law (Taylor, Alex's beautiful girlfriend).
What better way to celebrate than with Hershey Chocolate at Chocolate World in Hershey !

The excitement is REALLY growing in our house . Only six more days and the girls can hardly stand the wait .

Teresa has renamed our Elf on The Shelf ...Chippie. He was officially named Mango years ago by Alex and then the girls renamed him Buddy last year . This year he once again has been renamed . I think it had something to do with the movie that came out this year . The elfs name is Chippie and Teresa LOVES this movie .

"The bell still rings for me as it does for ALL that truly BELIEVE "-Polar Express

"Shining Spirit"

2011-12-12T19:35:00.009-05:00

Mary received wonderful news today . Her bone graft surgery for her cleft palate and nose repair has healed wonderfully . She still has a little bit of swelling but that should go down over the next few months. There was a very small chance the bone graft would not take so we are so glad that all went well!

Over the past 3 days four people have commented to me on Teresa's "Shining Spirit". All at different times and different places. Her magical personality is something that at times we tend to forget . We are very blessed to have her in our lives. Especially when every day could be her last one with us .

Saturday we attended the Casey Cares Christmas Party . A photographer was there to capture photos of the children . Teresa LOVED posing by herself for photos. She would flick her hair and then turn and pose, turn and put her arm out and pose, turn and strike another pose . She drew quite a crowd , all amazed at her "shining personality".

Then today at Hopkins , Mary's Doctor and nurse commented on her personality , how full of life she seemed. And yet again I was reminded of how special she is . She has such a strong love of life and a very determined personality . She knows what she wants and doesn't stop for anything. She thinks she can do ANYTHING and doesn't understand when something does not go her way . She has very little fear and loves to explore and learn new things. She only stops to rest when she has played so hard ( wanting to get every second of enjoyment out of everything)) that she is out of breath and looks at me like, why can't I keep going , what is wrong with my body , why can't it keep up with my mind ?

This shining spirit by the end of the day has completely worn me out. Trying to keep up with her questions and determination have left me ready for bed way before she has even considered stopping to go to bed ... She still has so much more to do and see and love. But when she finally does surrender to sleep , she is like a little angel COMPLETELY worn out .

I know with out this shining spirit and strong determination , she would not have made it almost 5 years with half a heart . I know this along with Gods Will have kept her with us .

A Baltimore Christmas ...Hon

2011-12-09T22:28:00.003-05:00

Christmas on 34th. Street, a Baltimore tradition.

calm again

2011-12-06T17:40:00.003-05:00

I think life has settled back down to a nice peaceful calm again . Well, as calm as it can get with 6 girls getting ready for Christmas , only 19 days until Santa comes and 19 days until Teresa turns 5 ( and Jesus Birthday too. She thinks Jesus will turn the same age as her).

Everyone is doing so much better. Grace's eye is improving every day . We no longer are going back every other day for rechecks , she doesn't have to return for 2 weeks now. Gemma has totally recovered from her pneumonia and will go in for her blood transfusion Thursday . She always feels more energized after her transfusion . Lucy is feeling like herself again , free from all abdominal pain . Mary's cleft palate and bone graft surgery continues to look great . She absolutely loves her new nose. Emilia and Teresa are the only two who did not have any emergencies . Teresa is doing o.k. . She has tolerated her one new med. very well and will start the second one tomorrow . She was having a little difficulty keeping her O2 above 75 this weekend and required her oxygen during the day but today she seems to have bounced back to normal. Not sure what was going on .

Last night the girls were invited to The Ronald McDonald House for a Santa Workshop. They enjoyed marking cupcake pops, crafts and Christmas decorations . I was even treated to a mini massage . It felt wonderful ! It is so nice to be able to enjoy the Christmas season finally and not be worried with medical things ... well at least for a little while . Every day is a medical worry with Teresa, just never knowing what will happen from one day to the next wears you down after a while .

"Thank You ", Casey Cares Foundation for helping to add some sparkle to our day ! It was just what we needed !

Lucy update

2011-11-29T08:15:00.003-05:00

I am almost afraid to say it, I think we are coming home !
If all goes well today we should be home by tonight .

This was a VERY crazy hospital adventure.
Lucy had been complaining her stomach hurt for over a week. She did not have a fever, but had continual stomach pain around her belly button. She could still play , go to school and eat so we thought it was just her being a little nervous . Then she started with a high fever and vomiting. So we thought it was a stomach virus. She felt better the next day but the pain in her stomach moved to her right side. The following day she started again with a high fever and a lot of pain on her side. So at this point we thought it could be her appendix. We called the pediatrician who agreed and we were off to the ER AGAIN!!!!!
She had Blood work ,X Ray , Ultra sound and CT . The CT report - ruptured appendicitis with inflammation .
So IV antibiotics were started as we waited for a special anesthesiologist to be called in for Lucy because of her difficult airway to anesthetize. As we were waiting for surgery the surgeon came in and reported that her CT was read by a second radiologist who disagreed with the first radiologists findings. The second radiologists report -inflammation around the cecal pole and ileocecal valve which can not be otherwise explained . Enteritis or other cause of mesenteric adenitis (inflamed lymph nodes) might be entertained. SOOO what does this mean ? Lucy came very close to having unnecessary surgery . I had no idea that adenitis mimics appendicitis . The plan was to observe her to make sure things improved .

This morning she is feeling a lot better. She still has the pain on her side but the Doctor feels this should continue to improve as the inflammation and swelling go down .
The plan is TO GO HOME !!! YEAH
Her Doctor did advise us to return immediately if she should start with a fever or more pain because the inflammation around her appendix could cause it to rupture.

Hoping when we get home that everything is OK with the other kids , I definitely need a break from this Hospital and ER. We have our own private room in the ER now. They see us coming and just wave , not a good thing .

It is ALWAYS a good idea to get a second opinion. We are so happy the second Radiologist caught this and we avoided surgery .

Grace's eye is still about the same . She went to Lacrosse practice on Sunday and her Doctor was not very happy with her yesterday . She said she should not be doing anything until her eye is completely healed . She still has bleeding in the back of her eye and the retina is still detached . She is suppose to limit her reading also. She equated this to mean , no school work , I don't think so .
She is still having her eye re checked every few days at Hopkins to monitor it . Hopefully it will improve so she can avoid surgery too.

Thank you everyone for your thoughts and prayers for the girls and a GREAT Big "Thank you " to Grandmom for helping Ed with the girls at home .

Emergency surgery

2011-11-28T01:12:00.001-05:00

Please pray for Lucy . The stomach flu we thought she had turned out to be her appendix . having emergency surgery .

Christmas on The Potomac

2011-11-26T22:03:00.005-05:00

Today we had a wonderful day at The National Harbor with Eddy and Laura and "The Girls".
So many fun things to see and do.

The part the girls LOVED the best ...snow falling inside .

Teresa gets sooo excited when she sees Santa. Unfortunately , we were not allowed to take ANY photos of Santa. You had to pay an enormous fee to buy their photo. So I guess you will have to use your imagination on how cute everyone looked sitting with Santa. Santa asked Gemma if she wanted a Barbie Doll. She looked at him and said "NO". But he quickly regained favor with her when he said ," Well how about a Strawberry Short cake doll?". This is her FAVORITE doll. ( i think because she represents food ).

The girls also mailed their letters to the North Pole for Santa. The girls each had a volunteer to help them write their letter. As Teresa was mailing hers I noticed what was written ...Dear Santa, A Beauty and The Beast Doll , a New Heart and a castle . Love Teresa

We have never spoken openly in front of Teresa about her heart or lungs , but I think she somehow knows what is going on . She associates all hearts (on necklaces or drawings , even a leaf in the shape of a heart ) as "her heart ". When I think of ALL the children in the world asking Santa for just Toys (mine included), it really puts a different perspective on the meaning of Christmas when a child knows they need something other than toys . I wish Teresa had that innocence to JUST want toys for Christmas .

We are so "Thankful" for another wonderful day filled with memories to last a life time.

Happy Thanksgiving

2011-11-25T19:54:00.009-05:00

Happy Thanksgiving! I hope everyone had a wonderful time with friends and family !!

All of our kids came home for the Holiday . Paul and his fiance Meg, came home from Georgia and Alex and his girlfriend Taylor , came home also . Eddy unfortunately had to work (he is a police officer ) but he and Laura came over Friday to help cut down our Christmas tree , decorate outside and have Dinner. There is nothing better than having all of your children home at the same time ! All 12 of them !!!!!

Unfortunately our Thanksgiving did not start out great. Grace was hit in the eye by a BB gun on Wed. evening. We spent the night in the pediatricians office and then the Hopkins ER. We had to return on Thanksgiving to have her eye re checked. Poor Ed had to do most of the cooking and cleaning .

Her eye has a scratched cornea ,Retinal hemorrhage, bruising and tear on the retina. She has to return to Hopkins every other day to make sure the tear is not worsening. If it starts to separate more , she will require surgery .

Then Lucy started with a stomach virus. Every time one of the girls gets a virus , life becomes a little more stressful. It's a waiting game to see if Teresa will get it .

So far Teresa is doing very well on her new meds. .
She is getting ready to celebrate her fifth Birthday and is so excited about having a Party all for her ! I think she has decided on a "Princess" theme.

Enjoying every minute of life...

Trying New Meds.

2011-11-18T22:45:00.003-05:00

It was a very long day . Friday we went back to CHOP for Teresa to meet with her new Doctor in charge of pulmonary hypertension . She is being transitioned from her HLH Cardiologist to the pulmonary hypertension team. This is definitely a step in the right direction . After a long day of testing, we met with Dr. H. to go over the results and talk about Teresa's future plans for treatment.

Two months ago we were ecstatic with hope of Teresa's lungs showing signs of improvement. Friday things were a little more subdued. Several major events need to take place before we can really start to look at the options for hope of a long future .
Teresa has two major issues of concern . The first, her heart needs to be repaired or have a transplant. It will not function forever in the condition it is now. She is already on very high doses of meds. for heart failure. The second issue, her lungs are severely damaged from 5 years of extremely high pulmonary pressure. The state they are in now , would not sustain a heart transplant or any kind of heart surgery . Up until 2 months ago we were told she was inoperable. But now her lungs are showing signs of slight improvement. Dr. H said he is an optimist but at the same time very realistic. He doesn't want to offer us false hope but he also does not want to take away what little hope we have. Optimistically speaking , he wants to start 2 new meds. for her lungs and in 3 months see if they are helping her lungs to improve. IF her lungs show further signs of improvement, THEN we could discuss the option of transplant or repair surgery . Realistically speaking, he is not sure IF she will ever get to that point. Right now he said he is trying things outside the realm of what are possible. He feels she has very little reserve to fall back on and without her lungs improving she is headed for catastrophe . Her lungs could continue to improve slightly but never reach the stage they need to be at for a transplant. At that point he felt she would have MAYBE two more years of life .
But the way I look at it ... one year ago she had NO HOPE, at least now we are slowly working towards the potential for HOPE. With out hope , life is VERY hard. Everyone needs hope .

As Ed and I sat there and listened to Dr. H as he explained all options for Teresa ,I had an unusual sense of peace as he was talking . A year ago this would have really upset me . But I have seen so many miracles take place in Teresa's life already. I KNOW God is healing her lungs and will provide what is best for Teresa's life to fulfill her purpose here on earth .
God has always provided for Teresa what ever she needed and I know He will provide for her now . She is already a living miracle.

Teresa could not wait to get home and tell everyone how she did not cry when she had her blood test. Gemma had her blood transfusion Thursday and Teresa always holds her hand and tells her not to cry ( it never works though , Gemma always screams ). Gemmma was not so happy to hear of Teresa's bravery .
One of Teresa's favorite movies is High School Musical .Guess who is her favorite character? Sharpey! She has the walk , talk and attitude to show for it too. In the Hospital the Echo. Tech. made the mistake of saying how he liked her bag. (she carries her little pink purse on her shoulder ,she was wearing her favorite pink dress with her red sparkle shoes and when she walks she flips her hair with her hand ). So as the tech. said this, she did a 360 turn , flipped her hair and in her best Sharpey voice said ," It's NOT a bag , it's a purse". ALL the nurses started laughing so hard, I had to apologize for her little attitude. But it is this attitude ,her strong will and love of life that make her such a special little girl . She is one very determined little girl who knows exactly what she wants and who by the way gives the best hugs and kisses!

Please , if you could help us to pray for Teresa's lungs to show continual signs of improvement and her heart to stay strong . As always we are eternally grateful to everyone . We are so happy to be celebrating our second Christmas with Teresa and another Birthday with her in our family !

Back to normal ?

2011-11-12T23:01:00.002-05:00

I think we are back in the swing of things again. It took a week to feel like we were back to our normal routines after coming home from the hospital twice in one week . The girls have had a lot of Doctors appointments over the past 2 weeks and it has kept me running back and forth to Hopkins several times each week . But all is good and we are very grateful for that.
Mary continues to heal wonderfully . Lucy had a little bit of the virus Gemma had but she has started different meds. for her lungs and she is feeling much better . Emilia will celebrate her 8th. Birthday on Monday . ( Yeah ) She will be getting her service dog(Mayzie) in January and is very excited. She is having more surgery on her legs in the spring and Mayzie will help her while she is in her wheel chair and with PT. Gemma goes back for her blood transfusion on Thursday and is feeling much better this week. Her school provided her with a speaking device that helps her to communicate better. She was so excited , the first thing she said in a complete sentence... "This is my talker it helps me to speak. I am happy . I like to eat. I want to go to restaurant and eat chocolate ". She even picked the voice she liked. It is absolutely amazing . She has sooo much she wants to say . Teresa has once again miraculously avoided the virus that Gemma had and then Lucy . God continues to protect her. We are going back to CHOP on Friday to start all her new meds.

As Christmas is quickly approaching , I am so "Thankful " we will have Teresa with us to Celebrate her second Christmas. Last year all her Doctors never thought she would get to this point of her lungs starting to respond to oxygen . In less than one year she could actually be listed for a heart transplant! We are praying her heart will stay strong and she will continue to avoid any viruses . She has very little reserve to fall back on .

Last night our wonderful friends , Vicki and D'Ann had a fundraiser to help us with Teresa's medical expenses. Our community , Family and Friends all came out to help . I had never experienced a Quarter Auction before. It was fast ,loud and A LOT of FUN !!! Thank you everyone ! We were very touched by everyones love and support.

What a Week !

2011-10-30T16:00:00.004-04:00

I have to say , I am soooo glad last week is over !
Everyone is home from the hospital and feeling great. Gemma has returned to school, Mary had all her bandages changed and we had a glimpse of her new nose . She couldn't wait to see it, although it is still very swollen , she loves it !
Gemma had her blood transfusion while she was in the hospital , so she is good to go for another 3 weeks.
Teresa has miraculously managed to avoid the pneumonia that Gemma had. How , I do not know being that they share EVERYTHING and are inseparable.

Thank you to Casey Cares foundation , the girls enjoyed a Princess Tea Party at the Ronald McDonald House with Princess Tiana and tickets to Disney on Ice !

Teresa has yet to start all of her new meds. because her new Doctor (the one in charge of Pulmonary Hypertension at CHOP , who by the way we LOVE) , decided to take a 2 week vacation . I hope he comes back very rested and ready to go because we are very anxious to have her listed for a heart transplant. I never thought this would be a reality for her . Although I have always had complete faith that God would work miracles in her life ( and already has) , it is now a bit surreal. We return to CHOP on November 18th. and I have this fear they will say "we made a mistake, she is still inoperable.No Heart transplant."

Thank you to everyone who helped to pray for the girls this past week ,as always it never goes unappreciated ! So grateful to you all!

Home and Back

2011-10-22T19:24:00.002-04:00

Mary had a great night and was feeling so much better this morning she was allowed to come home. Unfortunately when we arrived home , Gemma was still VERY sick . So back top Hopkins I went with Gemma. Oxygen , fluids, 2 I.V. antibiotics and hopefully this will knock this nasty virus out. When her fever is gone and she is feeling better she will get her blood transfusion . Back to the same floor I had just left with Mary.
Then this afternoon Ed calls to tell me that Mary has started throwing up again . So I call her Doctor who calls in an anti nausea med. to the pharmacy with the hope that this will stop the vomiting. No luck , she can not even keep the medicine down. SOOO , Ed is now on HIS way to Hopkins with Mary to have her readmitted ! Unbelievable, the only thing that can make this day worse if for Grandmom to call and say Teresa has a fever and is sick .
Trying to figure out how to be in 2 hospital rooms at the same time with 2 sick kiddos. Ed will have to go home and be with Teresa tonight because she has too many meds. she has to take before going to bed and oxygen .
Praying for Mary and Gemma to feel better, Teresa to some how avoid all these viruses and the strength to make it through yet another sleepless night .

long night

2011-10-21T12:24:00.004-04:00

Mary did not have a good night, vomiting, nausea, itching and pain. After throwing up every 30 minutes all night , by 3:00a.m. , we had had it. It was time for a change. The Doctors finally agreed to add new meds. and by 4:00a.m. she finally had some relief. Two hours of sleep and up again for 6:00a.m. rounds. What a night !

Grandmom has been holding down the fort on the home front. Poor Gemma started getting sick a few days ago and now has Pneumonia. That along with her hemoglobin being low has left her feeling miserable .

Wish I could be two places at once.

Mary update

2011-10-20T19:40:00.002-04:00

Mary's surgery went great ! Still trying to get her nausea and pain under control.
Thank you for praying for our sweet Mary !!!!!

Mary

2011-10-20T15:20:00.002-04:00

Mary's surgery started around 1 and should be over around 5:30.
So far the update is everything is going as planned.
She was so peaceful all day , almost excited to get it over with . She was very brave .

Our House

2011-10-16T21:40:00.002-04:00

We are getting ready for another busy week in "Our House".
Ed and I continue to process all the new information for Teresa's heart . It is so nice to finally have an option , but with it comes so much to take in and consider. Our life is getting ready to go on another amazing journey filled with hope and fear at the same time. I pray we will make the right choices for Teresa's life, for Gods will to be done .

On Thursday , Mary will have a major surgery to repair her cleft palate and nose. She should be home hopefully in three days without any complications. She is actually looking forward to the surgery because she wants so badly to have a nose that looks "normal". I am really going to miss kissing her little crooked nose . I think she is so beautiful just the way she is .

Unfortunately Gemma's blood transfusion had to be bumped back a week because of Mary's surgery and several Doctors appointments for Teresa this week . She is already showing signs of her hemoglobin being low but her Doctors do not feel it will harm her to go one more week . She is VERY tired , but still eating just fine.

Thank you for continuing to pray for Teresa and we would be very grateful if you would also include prayers for Gemma and Mary .

Miracle in progress

2011-10-08T20:49:00.003-04:00

Miracle- derived from the old Latin word miraculum meaning "something wonderful", is a striking interposition of divine intervention by a supernatural being in the universe by which the ordinary course and operation of nature is overruled, suspended, or modified.

Teresa's diagnosis- Hypoplastic left heart syndrome variant with mitral atresia, large muscular ventricular septal defects, dysplastic tricuspid valve , significant pulmonary vasculature disease, eisinmengers and moderate failure to thrive.

What we have heard from The Doctors for over the past year -"We discussed with the parents that Teresa has severe pulmonary vascular disease in association with complex single ventricle heart disease and most likely this will not be reversible". We continue to believe she is not a candidate for a Fontan .Transplantation could be considered but it would have to be for a heart/lung transplant for which outcomes are not ideal. " Revatio seems to have helped minimally , although we continue to not want to offer any false hope to the family ". "Maintain wellness for as long as possible". "She did not receive medical care soon enough ". "Too late ", "Her reserve is too low", "No hope", "Inoperable" , "Non reactive to oxygen or nitric oxide".

After over a year of NO HOPE , today, WE HAVE HOPE !!!
Is this a miracle ? To us ,YES !

Her Cath. showed that her lungs were now responsive to oxygen and nitric oxide. One year ago they were not . For the first time EVER we heard ... "We have good news". What? Did you hear that right ? Did you hear what he just said ? Ed and I looked at each other in disbelief. How could this be after so much bad news with no hope? The heart Cath . Doctor came out after the procedure and said " There is good news, her numbers have all improved" . Ed and I were a little confused , not sure what to make of it . As Teresa was recovering , her Cardiologist came to speak with us . He said we have great news , we now can start to discuss options. Ed and I became even more confused . What options ? We have NEVER had options. Dr. R. said he was going to have us meet with the head of the transplant team who was "The Specialist " for pulmonary hypertension . Because her lungs showed signs of being reactive to oxygen and nitric oxide there is hope that with more intense medical treatment, within A YEAR she could be listed for a heart transplant . Yes, a heart transplant , not heart/lung transplant just HEART! The survival rate for just a Heart transplant is great.

Today before leaving the hospital we met Dr. Hanna, Director of Pulmonary Hypertension. He was phenomenal. He offered so much hope . He feels that with an increase in her medicines , adding several different medicines, the use of night time oxygen ,getting her to increase her weight and keeping her away from ALL viruses , her lungs will be able to tolerate a heart transplant. The next year will require a lot of visits back and forth to CHOP to monitor the effects the medicines are having . There are a lot of side effects associated with the new meds. and she will have to be monitored closely for potentially dangerous effects.

Ed and I are feeling a little overwhelmed with everything right now. We have prayed so hard for a year for a miracle for Teresa's lungs to be healed so she could receive a transplant . WE are giving all glory and honor to GOD for this miracle. We are so grateful to EVERYONE for praying along with us for Teresa's miracle. So many people from all over the WORLD have prayed for her. She has touched so many lives and in turn you have ALL touched her life .

God has moved so many mountains already in Teresa's life . Our family is now faced with so many more mountains that need to be moved for the transplant to take place. We are praying our insurance will cover the transplant and all of the continued medical care . We are also praying for help with the girls while I am in the hospital in Philly for weeks , possibly months with Teresa. We would need a full time nanny , one that is capable of taking Gemma for her blood transfusions and daily infusions. Financially this is a huge mountain . I know GOD would not heal Teresa's lungs and not provide a way to help us with the care of all of the girls.

We are in awe at Gods love and mercy for Teresa and the power of prayer.
Thank you so much to everyone for helping us on this amazing journey of Teresa's life.

Wishing, Hoping and Praying

2011-10-04T21:26:00.003-04:00

Thank you everyone for your encouragement, love, support and most importantly your prayers. We truly could not handle this journey with out it. And Robin , Thank you for helping me to remember , no prognosis can override Gods plans !

Teresa has packed her favorite princess sparkly slippers to take with her Friday to Philadelphia. Friday morning at 10 am. she will have her heart cath. . The doctors have all said it would take a miracle for her pulmonary pressure to be lowered. Last year , her heart cath. was very dismal. The results left no hope for a future. We are praying for no complications ( she could have a heart attack or stroke during the procedure)and for the surgeons hands to be guided by God. We are praying for her pulmonary pressure to be lowered, her severe tricuspid regurgitation to be healed and for her lungs to respond to oxygen .
She will spend one night in the ICU and hopefully we will be home by Saturday night with great news !

Half The Sky

2011-09-30T22:11:00.004-04:00

Tonight we spent an amazing evening with Half The Sky . Half The Sky has reformed the way all orphans in China receive care. This wonderful foundation is responsible for giving Teresa the best medical care and loving environment . ( Teresa's orphanage was VERY poor and could not provide her with any medical care. They had her transferred to Beijing and The Half The Sky /China Care home for medical care.) We were able to personally "Thank " Jenny Bowen ( the CEO and founder ) for loving our little girl and taking care of her . We were very moved as Jenny retold " Teresa's Story " to the gathering. As she ended, she said how happy she was for Teresa to have her family even though it was "Too late" to save her life. These two words are what haunt me day and night. Too late, is what we hear at EVERY Doctors visit. Too LATE is what wakes me up at night , Too Late, is what I see every day as children celebrate birthdays, learn to ride a bike, graduate from kindergarten, college, marry... Too Late for TERESA! Teresa will never get to experience these events because she did not receive medical care soon enough and now it is too late to save her life . She is inoperable .

I know God has perfectly orchestrated Teresa's life and in His eyes, it was never too late. Her life has a meaning and a purpose. I know this, but it still does not make it any easier.

It should never be too late for any child . No child should suffer, no child should go unloved, no child should go to bed alone . Every child should know LOVE and be LOVED . I guess this is called 'Heaven".

We are praying for "Peace " , to accept the results of Teresa's Heart Cath. next Friday . We have not given up hope of a miracle.

Farm Day Fun

2011-09-24T21:32:00.005-04:00

Today we spent a fun day at The Days End Horse Rescue Farm Fall event. The little girls and I had fun playing games and riding the horses while Grace volunteered. Our favorite horse is Jinx. He has come so far from when he was first rescued. He is one of the most loving and gentle animals I have ever seen . ( I am not a big horse fan , but because Grace is I am trying to learn as much as possible about horses for her and I actually LOVE this horse!) . Lucy was the lucky one that got to ride him today .

Yesterday we journeyed up to Philadelphia for Teresa's pre-op testing for her heart Cath. on October 7. Blood work , chest x-ray, Heart echo. and 6 minute stress test and she did fantastic! I on the other hand was ready to have a heart attack watching her do the stress test on the tread mill. She ran for 3 minutes and then they had to stop because her oxygen dropped to 55 and she turned a shade of purple I have never seen before!!! She sat down and rested for a while and then wanted to know if she could do it again ! REALLY???? You almost gave your Mother a heart attack and you want to do it again ? Not today .

Wishing, Hoping and PRAYING for a miracle in TWO weeks !

Fundraiser info.

2011-09-20T21:58:00.002-04:00

Many people have asked how they could make a donation to the fundraiser.
Please email danndorschel@yahoo.com

Ed and I are VERY grateful to everyone for helping us !

Angels Among Us

2011-09-19T18:11:00.005-04:00

Little over a year and a half ago , before Ed and I took a "leap of faith" to adopt Teresa we were really struggling with whether or not God was calling us to adopt again . We had only been home from china a few months with Gemma and we were still adjusting and working through her monthly blood transfusions to get her stable. we knew we did not have the finances or energy to go forward with Teresa's adoption but at the same time we felt God was strongly leading us to adopt her. Not knowing how to proceed we consulted with Father Whatley . Before meeting with him , Ed and I prayed, asking God to speak through Father Whatley, giving us a clear answer whether to move forward or not .

The answer Father Whatley gave us ; "The will of God will never lead you where the grace of God will not protect you ".

We had our answer and very reluctantly took a HUGE leap of faith .

We did not know how we would come up with the tremendous adoption expenses let alone care for a child so ill...but God did. Teresa's entire adoption was a miracle. Everything fell into place miraculously , from adoption fees being dropped and reduced , Immigration expediting EVERY document and procedure, China expediting all paperwork, Our Senator and congressman helping to pull strings and our social worker helping to complete our Home Study in record time . From start to finish , with Travel Approval it took only 5 months!

We came home from China to settle into our new "Normal". We tried to return to life as normal , but that life was long gone . Our "new" life consisted of tremendous stress trying to juggle all the girls Doctors appointments ,illnesses and surgeries . To top it off the economy was worsening making it VERY difficult for Ed to pay himself and all of our financial security was gone.

Very confused we questioned God why He would lead us on this journey and not provide a way . We were REALLY struggling to make ends meet. Unable to afford ANY extras in life we were forced to remove the girls from everything .

That's when the angels started appearing.

Our angels came in many different forms...friends, family ,Priests, teachers, instructors and complete strangers.
These are our Angels among us .
They are helping us to carry this tremendous weight .
All Ed and I wanted in life was to do Gods will , take care of our family , remain un noticed and help others . Now somehow we are the ones needing help and it is a VERY humbling experience.

Our friends have put together a fundraiser to help us with Teresa's expenses for her oxygen and heart medicines.
The fundraiser will be November 11, 2011 at The Knights of Columbus on Frederick Rd., in Catonsville.

Info
Please join Vicki Wrisk and I as we host a "Quarter Mania Auction" for our dear friends, the Bartlinski Family. All proceeds from ticket sales will assist with the medical expenses for their daughter, Teresa Bartlinski.

GENTLEMEN: Please pass this along to your wife, mother, aunt, sister, girlfriend, etc., that would love a fun night out with the ladies!

$20 for admission & receive 1 paddle + $10 in quarters (no minors please).
Sandwich foods, desserts, snacks & beer, wine & setups available for purchase.

This is not a St. Mark HASA sponsored event.

Email me at danndorschel@yahoo.com for ticket/additional information ( i have a detailed flyer ). Tickets are limited! We hope to sell in advance and not at the door. If you cannot attend the event but would like to make a donation, please email me.

For those of you that have not had the priviledge to meet this amazing family, please check out the following links:

The Bartlinski's Blog:

http://ourplacecalledhome.blogspot.com/

December 2010 Catonsville Times Article:

http://www.marylandfamilymagazine.com/2011/01/11/catonsville-family-opens-home-and-heart-to-children-from-china/

We are so very grateful to these angels for helping us !

Teresa's First Day of School

2011-09-14T13:05:00.003-04:00

Look out Pre-School , here I come!!!!

Today Teresa started 4 year old pre school . We prayed about this day for a long time. Should we let her go or keep her home and not have her exposed to so many viruses. Ed and I both agreed there was no holding her back . She wanted to go and be like everyone else ! She was SOOOOOOO excited !

Next Friday we head back up to CHOP to have a full day of pre-op testing done to make sure Teresa can handle the anesthesia for her heart cath. She is scheduled to have her heart Cath. on October 7th. On the outside she looks fantastic and she has been feeling great with lots of energy . Her oxygen has been holding at 75. But on the inside , that's a different story . When I hold her , her little heart feels as if it is coming through her chest , beating so hard and fast . This has been one of the hardest things for me to overcome because it is a constant reminder of how fragile her life is . I can only imagine what this must feel like for her continuously .

We are Praying ,Praying , Praying ...that on October 7 we receive good news. It will be one year that she has been on the top doses of all her heart medicines. We need the progression of damage to her heart and lungs to be slowed down (the med. can not cure her heart and lungs but can only slow down the deterioration . Surgery is the only cure but she is inoperable). We also have full faith that GOD can heal her heart and lungs completely ! This is the miracle we are praying for.

Gemma Rose

2011-09-08T17:15:00.004-04:00

Poor Gemma came home from school yesterday completely exhausted. She did not want to do anything . When I asked her what her favorite thing of the day was , she said ...lunch and nap time! That's my Gemma Rose !
She was due for her transfusion this week and her hemoglobin had dropped VERY low . Her little lips were so white.
Today she is feeling much better. It's amazing how a little blood can make her feel energized and ready to go . She will have to go back to receiving her transfusions every 3 weeks because 4 was a little too long .

Gemma Rose is 5!!!!

2011-09-01T20:06:00.005-04:00

Yesterday Gemma Rose turned 5. Kissy Face, Buddha Belly , Drama Queen, Chun Yang, Yang Yang, what ever name you go by , we love you just the way you are !

Gemma was born with the most severe form of Beta Thalassemia Major. She will require blood transfusions every month for the rest of her life ( or hopefully a cure will be found soon . Right now the only cure is a bone marrow transplant). She also requires daily (eight hour) infusions of Deferoxamine to remove the excess iron from her body . Although she endures a lot on a daily basis, she never complains. She rolls with the punches and is very easy going . That is as long as her belly is full. There are two things in life that Gemma loves, eating and bugs. She eats anything and everything, she is not picky. She also loves to collect critters. Her latest find was a huge toad.

When we adopted Gemma 1 1/2 years ago we toured her orphanage and visited with her Foster Family . She was only with the Foster Family for 5 months but she was greatly loved. When we arrived at their home I thought we might have made a mistake by coming. Gemma was ecstatic . She was so happy to show us her bed, shoes, toys and her favorite snacks. I thought there is no way she is going to leave with us . But luckily just before it was time to leave her Foster Mom told her how much she loved her and that she was so happy she had a family and would be going home with us . This really brought closure for Gemma. She walked to the van with her Foster Mom's hand and Mary's hand in the other , turned and gave her a kiss and said "Good- Bye, I'm going home" and jumped in the van and was fine. Luckily her Foster Mom waited until we were driving away to start crying . This was one of the most memorable Thanksgiving Days we have ever had . We did not have turkey or pumpkin pie , we had the best home made peanut soup .On this special American Holiday we were "Thankful" for a Loving Family that loved our daughter before we could. We were surrounded by "new" family and friends. Memories for a life time.

Little Miss Kissy face bonded with us right away . She is such a loving child. She and Teresa are very close, they are best friends .

Today was her first day of kindergarten. Sooooo excited !
Along with her Thalassemia , Gemma has a severe speech disorder. She can say a few words,but most of her conversation is uncomprehendible. This girl LOVES to talk too. This year her school is going to provide her with a speech device . This will help her to communicate better with her teacher along with receiving speech therapy twice a week . What an exciting year it will be for her.

Lucy's Hurricane Birthday Party

2011-08-27T15:23:00.008-04:00

In one week we had an earthquake and a hurricane.
Saturday was Lucy's Eighth Birthday .We celebrated by having a Hurricane Birthday party ! She was so excited to ride her new bike but unfortunately with all of the rain that had to wait . We ended up having to take Teresa to the ER around 8:00pm because as the girls were cleaning up getting ready for bed , Emilia decided to wing a toy at Teresa and it hit her in her cheek , went through her cheek into her mouth , poor baby . So during the middle of the hurricane we went to Hopkins where luckily it was empty . We were in and out in no time . All patched up and good as new. I'm hoping she does not have too big of a scar on her beautiful little face.
We only lost power for about 16 hours, so it wasn't too bad.

Luckily the sun came out today and Lucy could ride her new bike!

Five years ago when we adopted Lucy I had no idea what we were in for . Her adoption opened the eyes of my heart. Mary's adoption was so easy and her special need was uncomplicated. But with Lucy we had no idea of ALL her medical needs before we adopted her . We were told she had cleft palate and torticollus and that's all. I know with any adoption you have to be open to all of the unknowns and with Lucy there were so MANY.
She came to us very sick . Once we arrived home she spent the first 2 weeks in the hospital . Her Doctors said she would not have lived much longer had she stayed in China .
Before we left for China to adopt Lucy we had contacted China Care ( unknowingly the same orphanage that Teresa would soon be in ). We asked if we could do anything to help . At the time they were in need of supplies being delivered to China. So they sent us the supplies and we repacked them into 6 suitcase and delivered them to CC in Beijing when we arrived. While there we toured the home and had the privilege of playing with all of the children . God was slowly opening our eyes to the tremendous need for orphans. Little did we know that our sweet Teresa would soon be in this same home receiving life saving care !
As we left the China Care Home we were very moved by all of the children left behind without families to love them .
Several days later we traveled to Lucy's Province to meet her . What a little fire cracker she was . As sick as she was she tried everything she could think of to make us laugh so we would love her. Lucy's story is very sad . No child should have to endure the tremendous suffering that she experienced in the first three years of her life.
I would like to think had we known of her health before her adoption that we would have still gone through with it . It was very scary for a while . Today she is doing fantastic . She still has major health concerns but she is thriving and growing.
Four years ago when we returned to China ,we went back to Lucy's orphanage. We toured the orphanage and were able to see where she had spent so much of her early years. We also visited her abandonment site.( this is where she was found) We were there exactly 4 years to the day that she was abandoned. As I stood on the dirt road and watched all the people walking by , I couldn't help but think that just maybe one of these women might be Lucy's Birth Mother . Did she come back every year on this anniversary ? I can only imagine the pain she carries in her heart . She loved " Ya Ya Mei" so much . Lucy was found with a birth note from her birth Mother. This birth note told us so much about her Birth family . We know that she was dearly loved and that she had an older sibling . We also know that August 27, 2003, is her exact birth date and time. Her Birth Mother named her " Beautiful little Sister " .Lucy was born with bilateral cleft palate and torticullis. Her head was severely deformed and fused to the side and her mouth was completely open going through both sides of her nose. She was anything but beautiful, but her birth mother ( and I ) both thought she was the most beautiful child we had ever seen .

Today she is a very happy 8 year old .She still has moments from her past ... She becomes my shadow at night ,following me every where because she is still haunted by her past . How I wish I could erase these terrible memories for her. I know God is slowly healing her memories and filling them with love.

I am in awe at how God was preparing us for Teresa and how HE lead us to The China Care home just before Teresa would arrive . Our connections to China Care are only made possible by God.

China Care/Half The Sky Foundation are amazing organizations that help to save the lives of so many children in China. We are forever grateful to them for taking care of Teresa .

Want / Need

2011-08-25T20:57:00.003-04:00

Want and Need, one of the many lessons we have learned over the past year. With Teresa's medical care so expensive ( her one heart medicine alone is over $1,200 a month ), we can only afford what we need.
I constantly tell the girls "God will provide all that you need".
This is sometimes difficult for them to understand...
For the past few months Grace has been asking ,almost daily , for a horse . A horse is so far off my radar of something we need right now. So after hearing about this tremendous "Need" for so long , I finally told her to take it up with God .If HE felt this was something she truly "Needed", than He would provide a way .
So guess what ... God provided a way to meet Grace's "Need".
Through a friend we learned of a horse rescue farm in need of volunteers to help rehabilitate abused horses.
Grace went through the training and has been volunteering there for the past 2 weeks. She is in heaven . She LOVES caring for the horses and is helping to build trust in humans again through loving care. She will soon be matched with a horse to foster until it is healthy enough to be adopted.
God knew Grace's "Need" when all I saw was "Want".
God continues to provide for our every need!

As summer comes to an end we are so thankful to God for giving Teresa a summer full of fun , laughter, love and many healthy days full of energy and free from illness.
Teresa will start Pre-K in September. We really struggled over whether or not to send her to school or home school her. A simple cold could potentially take her life. She really wants to go to school. I have faith God will provide for her every need .
We are returning to CHOP in early October for another heart Catheterization .
Still praying for a miracle...

Teresa's First Holy Communion

2011-08-14T20:42:00.006-04:00

Teresa's First Holy Communion .A very special day . Thank you for keeping Teresa in your prayers and getting her to this day . It was very special for her .

Teresa's Fantastic Summer

2011-08-08T18:59:00.005-04:00

Teresa is having a fantastic summer! She is feeling great . This is the longest period of time she has ever gone without a fever, cough , runny nose , virus ...nothing !
Summer started with Teresa's Wish trip to Disney . We were a little apprehensive about the plane ride and exposure to so many people at Disney , but she stayed perfectly healthy .
Summer Bible school was another great experience . This was Teresa's first exposure to a classroom setting with other children . She loved it ! She talked about all her new friends daily . Again no illness!
For three days we were able to go to Grandma's beach house . ( unfortunately Ed could not go with us because of work. One of the many joys of being self employed.)Teresa had never seen the Ocean before and this was an experience we did not want her to miss.
Seeing the beach and ocean for the first time , priceless... "Look at all of the snow!"

Thanks to Give Kids the World , Teresa was able to go to Hershey park and have fun eating endless chocolate. ( for one year after a Wish , the family is given free tickets to amusement parks around the country. Luckily Hershey is close to where we live ).
Thanks to a wonderful ballet teacher , Teresa and Gemma were allowed to become ballerinas once a week .( thank you Miss Lisa for giving the girls this opportunity !) Teresa loves showing off her dance steps to anyone who will stop and watch.

Thanks to a very caring Horse instructor , Grace was able to continue riding and competed in her first horse show in 7 years. She loves to ride !

Our summer days were also filled with fun times playing at the pool, enjoying the company of close friends and just hanging out at home . We met new friends on their adoption journey too.
Our nights were complete with snow balls and catching lightning bugs. Gemma loves her bugs, she has quite the collection in her bug cage.
Gemma also had a very healthy summer. She has been able to hold onto her blood long enough to allow her to go 4 weeks in between each transfusion .Her ferritin levels still remain dangerously high (normal is between 10-300 and hers is 4,000)but she is taking baby steps in the right direction .

Mama Mia is the movie of choice this summer for the girls . They all love it and know all of the songs.

Sunday Aug. 14 , will be a very special day for Teresa . She is making her First Holy Communion . As she likes to say , " I am going to marry Jesus."
The Catholic Church is making an exception for Teresa to receive this sacrament early . She has shown an understanding for the sacrament and a very strong love for Jesus.
All week she has been telling everyone that she is getting married. Most people just smile and say "that's nice", but the few that ask her who she will marry are a little surprised when she says "Oh, I am marrying Jesus" . She is so excited.

This summer has also brought us to a peaceful realization for Teresa's life. We are no longer searching for the BIG cure all. We are content to let God be God .

Min Min has HER Family !!!!

2011-07-25T22:40:00.006-04:00

Exactly one year ago when we adopted Teresa we met her best friend, Min Min in The China Care Home . Now Min Min has HER very own family too !!!

She will be home in a few more days .
Last year Min was so excited for Teresa when she heard she would have three brothers . She kept holding her fingers up counting 3 and laughing . Now she will have 4 brothers of her own . We are so happy for this wonderful family and for Min Min .

Saying good bye last year was so sad because Min kept asking us to take her home too. She watched expressionless as we waved good bye . Now she will never be alone again.

Please keep her family in your prayers , Min has a complex heart condition also .

When I told Teresa Min Min was coming home to her own family she was so happy !

"Really ? Really ? She has a family like me?"
" I so happy for Min Min "
" Now she never be sad again "

The Gift You Are

2011-07-23T17:09:00.003-04:00

A friend sent me an email the other day that made me stop and think . I am very grateful to Holly for sending this to me because it made me realize what I was doing . I was wrong. I was becoming very angry with God for letting Teresa suffer and not healing her. When life is wonderful and you have health , wealth and happiness , it is very easy to have faith . When you are surrounded with suffering and hard times your faith is really tested and it easy to question God , Why ?...

Here is a bit of what Holly sent me .

Elisabeth Elliott, Her husband and four other missionaries were massacred back in the fifties. Here is something she wrote about the death of those five men.

"There is always the urge to oversimplify, to weigh in at once with interpretations that cannot possibly cover all the data or stand up to close inspection. We know, for example, that time again in the history of the Christian church, the blood of martyrs has been its seed. So we are tempted to assume a simple equation here. Five men died. This will mean x-number of Waorani Christians.

Perhaps so. Perhaps not. Cause and effect are in God's hands. Is it not the part of faith simply to let them rest there? God is God. I dethrone Him in my heart if I demand that He act in ways that satisfy my idea of justice. It is the same spirit that taunted, "If Thou be the Son of God, come down from the Cross." There is unbelief, there is rebellion, in the attitude that says, "God has no right to do this to five men unless..."
...
I believe with all my heart that God's story has a happy ending....but not yet, not necessarily yet. It takes faith to hold on to that in the face of the great burden of experience, which seems to prove otherwise. What God means by happiness and goodness is a far higher thing than we can conceive.

I was dethroning God by not fully accepting His will for Teresa's life. He has given us a tremendous gift in her . When you live with someone who is dieing you are forced to look at life differently . Things that used to be important simply aren't any more. Everything has meaning. I know Gods story has a happy ending for Teresa but that probably will not be here on earth , it will be in Heaven.

One Year Anniversary

2011-07-21T22:45:00.002-04:00

Last week we celebrated Teresa's one year Anniversary !!!!!
Oh what a year it has been . We have experienced wonderful highs, days filled with hope, laughter and sweet hugs and kisses , to extreme lows, days where all hope felt lost .
In one year Teresa's personality has blossomed. She has a sparkling personality with so much energy and love for life. She is the funniest little "Princess" , always playing pretend with Gemma. ( the two of them are inseparable. Each night as they say good night to each other you would think they were leaving each other forever . Hugs ,kisses , " I love you , no I love you more...").

When someone asks her if those are her sisters, she puts her hand on her hip and says "Oh , that is my family " She loves her family ! We are so blessed with her.

Her health ... she continues to hold on .Thank you to everyone for continuing to pray ! We definitely can feel the prayers . Teresa continues to amaze me how she misses all the viruses that come her way . Lucy has had quite a few and Teresa managed to stay virus free ! Definitely a miracle . Teresa is scheduled to return to CHOP in September for another heart cath.. We are praying for a miracle . We are really starting to notice the look of despair on the Doctors faces as we return each visit. The look of hope or optimism is slipping away .

Watching life through Teresa's eyes for the past year has been a gift that at times was very difficult to understand. I still struggle with why... but I pray GOD will open our eyes to the meaning of it all and bless us with Teresa for many more years.

Fishing Fun

2011-07-10T20:12:00.007-04:00

Gemma LOVED the worms !

Fishing fun!!!

Lucy caught a FISH!!!
She was a little unsure of it at first ...and then VERY proud !!!
"It was GINORMOUS"

Teresa caught a fish too!
"It was this big "

Happy 4th. of July

2011-07-05T22:25:00.003-04:00

Our community celebrates the 4th. of July in a very big way . The fun starts in the morning with games for the kids followed by an amazing parade and then fireworks in the evening. It has been like this for as long as I can remember. Only recently ( within the last few years) things started to change ... People started lining their chairs along the parade route a few days before . Now it is 2 weeks before the 4th. . They want to be guaranteed their prime viewing location for the parade. You would think they were giving away free stuff... well there is the coveted candy that is thrown from the floats. To our community the parade is a cherished tradition passed down from generation to generation . We wouldn't miss it . We love Catonsville !!!!

The girls wanted to do something to give back to Give Kids the World Village so they came up with the idea to sale cold drinks from their wagon during the parade and give all of the donations to the Village. We mailed the donation today to the Village, although it was small it was filled with a lot of love !

Thank You "Give Kids The World "

2011-06-28T15:51:00.005-04:00

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

2011-06-24T08:20:00.002-04:00

Princess Wishes

2011-06-23T22:35:00.004-04:00

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

2011-06-22T23:30:00.003-04:00

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.

2011-06-22T22:57:00.005-04:00

2011-06-22T07:47:00.003-04:00

magic

2011-06-21T21:52:00.004-04:00

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

2011-06-20T23:01:00.002-04:00

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 ...

2011-06-14T15:05:00.004-04:00

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

2011-06-09T20:50:00.003-04:00

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

2011-06-04T12:33:00.003-04:00

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

2011-06-01T19:03:00.002-04:00

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

2011-05-26T21:02:00.003-04:00

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

2011-05-24T21:45:00.004-04:00

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

2011-05-18T20:23:00.002-04:00

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

2011-05-15T19:31:00.002-04:00

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

2011-05-14T13:30:00.002-04:00

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

2011-05-13T12:45:00.002-04:00

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

2011-05-09T23:11:00.002-04:00

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

YOU WILL SOON WITNESS A MIRACLE !!!!!

The Blog

2011-05-04T19:50:00.003-04:00

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 !

2011-05-01T21:42:00.005-04:00

"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 .

Gaston's Shoes

2011-04-29T17:59:00.004-04:00

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"

2011-04-25T20:17:00.002-04:00

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...

2011-04-23T20:44:00.002-04:00

One week through Teresa's eye's !

D.C. Cupcakes

2011-04-19T16:22:00.002-04:00

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

2011-04-17T21:17:00.003-04:00

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

2011-04-13T21:50:00.003-04:00

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

2011-04-08T16:39:00.002-04:00

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

2011-04-08T16:10:00.003-04:00

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 !

2011-04-05T19:32:00.003-04:00

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

2011-03-30T16:40:00.002-04:00

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

2011-03-25T20:43:00.003-04:00

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

2011-03-21T22:29:00.002-04:00

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

2011-03-18T21:42:00.003-04:00

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

2011-03-13T22:06:00.003-04:00

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!

2011-03-12T21:57:00.002-05:00

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

What A Good Week !

2011-03-11T21:36:00.004-05:00

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

2011-03-08T16:40:00.004-05:00

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 !

2011-03-06T21:37:00.003-05:00

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

2011-03-02T18:49:00.002-05:00

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

2011-02-28T19:56:00.002-05:00

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

2011-02-27T21:56:00.002-05:00

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

2011-02-23T19:24:00.002-05:00

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

2011-02-22T19:59:00.002-05:00

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

2011-02-21T15:18:00.003-05:00

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 !

2011-02-19T20:55:00.002-05:00

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 !

2011-02-13T20:48:00.003-05:00

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".

2011-02-12T22:24:00.002-05:00

"To Do List "

2011-02-12T21:22:00.006-05:00

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

2011-02-09T18:34:00.003-05:00

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 .