Transplant / Graduation

Friday afternoon we headed down to NC for Mayzie and Emilia's graduation . All the girls were in the car packed and ready to go and the phone rings...normally I would have just let it ring since everyone was already in the car. (The troops can get restless when not in motion ). BUT I didn't , I answered it and I was glad I did. It was the cardiac transplant team calling to discuss their decision for Teresa.

Their decision was to not list her right now. Their concern was that some of the data in the Cath. was inconsistent . Some of the data showed her lungs were improving and might be able to accept a new heart BUT there was a lot of concern as to if there was enough vasculature and if it would be able to accept the new blood flow . So , they are not saying no, they want to wait and repeat the heart Cath. in a few months and at the same time do a cardiac MRI to also measure the blood flow to her lungs and if these 2 tests together are consistent then they will make the decision to list her.

Needless to say we are very disappointed but we are trying to be optimistic. If it were up to me (and being the control freak that I am ), I would be on the phone tomorrow shceduling the cath. and MRI trying to get it done ASAP! But I am going to wait on GOD. This is HIS plan and HIS timing . I know HE has something already planned for Teresa and we will have to wait, be patient and trust in God. God is always good in everything .

We got in the car ,put on a happy face and headed to NC.

Paw4People/Paws4Vets, what an amazing organization !
We had the honor of being part of a truly inspirational weekend . It was standing room only for the 20 children and Veterans whose family and friends came together to support them as they graduated with their service dogs.
The children's stories were all incredible. They have all been able to overcome so many obstacles with the help of their dogs , some physical but most socially and emotionally .
Emilia was so happy ! She even got up in front of the entire graduation and spoke about how happy she was to have Mayzie. Her level of confidence has increased drastically since Mayzie has come into her life. Her writing ability and vocabulary have also improved. She writes daily in her journal about Mayzie .

Next to graduate were the Veterans. Paws4Vets provides service dogs to Vets who return home from war and are faced with many life changing emotions and circumstances . Many of the Vets suffer from Post Traumatic Stress disorder . The dogs have been trained to help them emotionally and physically with their stress. Their stories of survival and triumph were awe-inspiring. To sit next to them and witness their pride and achievement was very moving . We were honored to be able to "Thank " them for their service to our country .
After graduation ,photos and a special dinner, the girls had some time to relax and look for shells on the beach . Even Mayzie loved looking for shells!

We are so grateful to everyone for your continued prayers, love and support for Teresa. We pray God will sustain her and keep her safe as she waits for HIS timing for her MIRACLE !

Transplant Update

Last Friday we started the process to be evaluated for a heart transplant for Teresa. Yes, just a heart transplant, not a heart/lung transplant. To even be considered for a heart transplant is a miracle all by itself. I still can not believe that Dr. Hanna feels she is at this point after being told for almost two years it would NEVER happen.

To say the process was stressful is an understatement. I knew a little about what would be involved but we were not fully prepared for the enormous amount of information that was presented . There is just so much to learn, plan for and consider.

We first met with the transplant coordinator. She discussed the whole process from pre transplant to post transplant. We learned Teresa could be matched with a heart from a donor 80% her size to twice her size. Her wait time to receive a heart depends on her wait list status. 1A status are patients who are the most critical and are in the hospital. 1B status and then 2 status. Teresa would be a 2 status because she is waiting at home . She will be tested for Panel reactive Antibodies. High PRAs lessen the chance of receiving an organ that will not be rejected. Rejection occurs when the body tries to destroy a transplanted organ . Almost all transplants are rejected at some point with the average heart lasting 10-15 years before she would require another transplant.
This is usually a surprise to most parents but 10 years sounds wonderful to me considering what the alternative is right now for Teresa.

Next we met with the Psychologists . I think she wanted to see if we would be mentally stable enough to go through this process . I think we fooled her because she seemed to be very content with all of our answers . (I wouldn't say Ed and I are mentally stable right now considering the past week ) but if she thinks we are, we're going with it. Her last question was "How are we handling all the stress ?". I don't know what answer she was looking for or what is considered the correct answer. I could see Ed was going to answer that question with , "How do you think we are handling the stress? We have 9 kids , 5 special needs daughters, one daughter gets a blood transfusion every 3 weeks another is in heart failure, another is getting ready for surgery, our insurance may drop us in July , I am self employed and losing money because I had to take off today to come up here and answer this ... question ". BUT luckily I intercepted the question first and told her why we had chosen to adopt Teresa and how we rely fully on GOD to help us with the stress . We take one day at a time .

The pharmacist was the next stop. We had a "test" on all of Teresa's current medicines . After she felt comfortable that we were not missing any doses and we would be capable of giving her the new meds. post transplant she allowed us to move on to our next stop.

Blood tests- 14 vials of blood !!!! The phlebotomist was unsure if she would be able to walk after losing so much blood , but she did great . She didn't even cry .

The day ended with us speaking to one of the transplant Cardiologists. He was in the process of reviewing all of Teresa's medical history and was unsure yet what his decision would be. He did say he had never seen a child survive a heart transplant with lungs in the condition Teresa's are. We definitely did not want hear this . But yesterday we met with Dr. Hanna and he is the expert on Pulmonary Hypertension and he feels she would survive the transplant but it would be VERY high risk and she could struggle for a few weeks.

Yesterday we also met with the nutritionist . Her main concern is Teresa's weight . She has plateaued at 29 pounds and needs to gain more weight . She gave us a lot of helpful advice on how to add calories to all of her foods.

After another echo. , 6 minute stress test, EKG and more blood work we were done!

We arrived home last night totally exhausted from the whole process.
We are now trying to figure out (should their answer be "Yes") , how we will juggle everything. (mostly life at home while i am gone with Teresa). Another major concern is if our insurance will cover the transplant and if so how much of it . Since Ed is self employed we purchase our own insurance. For the past five years our insurance premium has doubled every year because of all the girls medical requirements. This past July, after having Teresa on it for one year our insurance once again doubled and stated the increase from "over usage". I can only imagine what it will be this year especially after seeing Heart Transplant Evaluation on the statement this week. The insurance department of the transplant team suggested that most families do fundraising to cover what insurances do not .The estimated U.S. average first year heart transplant fee is -$787,700 . O.K.....just for ONE YEAR !

Trying to wrap my head around all of this information has left me feeling in complete panic. When I think of it all , I just don't know how it will all happen . But then again a year ago we did not think a heart transplant would happen and here we are being evaluated . So obviously God is in complete control and moving things in the direction of His Will.

Should Gods will be a heart transplant - we are praying for peace and to trust that God will work out all of the what ifs...

Should Gods Will not be a transplant - we are praying for the same thing.

Sometimes, if God doesn't give you the Miracle , you will be the Miracle for someone else...

One Step Closer

What was suppose to be a routine blood transfusion for Gemma last Monday was a little unusual . I could tell her Hemoglobin was low from the way she looked and was acting. It ended up being the lowest it has been in 2 years . She also has lost 4 pounds in one month . We are not really sure how or why that happened . Then 1 hour into her transfusion she started having difficulty breathing and became very listless. Her transfusion was stopped and she was watched closely . After a few hours she was feeling much better and we went home . So this week we are headed back for another transfusion because her hemoglobin is still very low . Hopefully this week will be uneventful .

This past weekend Hopkins sent the girls to a Princess Party at Port Discovery . The girls loved meeting all the real princesses and having lunch with them . They then had a fabulous time playing in the Museum. Guess who LOVES to surf or I should say who wants to learn to surf. Miss Gemma Rose ( she is a little fish all summer playing in the pool . She loves the water .) Right now her favorite movie is Soul Surfer . The part where Bethany teaches a little girl to surf is her favorite scene because the little girl looks just like her . When that part comes on she jumps up and down yelling " that's me , that's me " . ( the child does actually look just like Gemma ) .

For Teresa's heart transplant we are one step closer . We found out that our insurance will cover the consult on Friday . We are still waiting to hear if it will cover the entire transplant , but this is at least a small step in the right direction . Friday we will meet with the Nurse Practitioners, Social Worker and Psychologist. Teresa will have 1/2 the labs drawn ( the other 1/2 will be drawn next week . It is too much blood to be taken at one time )and she will have an ultra sound of her vessels in her groin and neck . Next Friday we will meet with the other half of the Transplant Team (Cardiologists, Surgeons , Transplant coordinator , Dr. Hanna and more testing ). In the meantime we are reading up on ALL the material they have sent us on transplants .

We are one step closer !!!!!!

Thank you all for your continued prayers !!!!

Miracle...In Gods Time.

Friday I talked with the Transplant Team Coordinator for Teresa's heart transplant . We will meet with the entire team very soon . There is So much information to think about and process. I am feeling a bit overwhelmed by it all. I can hardly believe we are at this point. Only by Gods love and mercy have we gotten here. HE has perfectly orchestrated every step. So many more things need to fall flawlessly into place but I know in Gods time they will.

Five things we are focusing our prayer on ;

1. For Teresa to be accepted for a Heart transplant. She will need to go through a lot of testing to see if she qualifies.
2. For our insurance to cover the transplant and all medical care 100%.
3. For God to provide a loving, caring Nanny to help take care of the girls at home while I am in Philly for weeks, possibly months with Teresa and the provisions to afford her salary .
4. For Teresa to stay healthy and her heart to stay strong as she waits.
5. Peace- Peace for the family that will lose their child and give Teresa life.

Tomorrow Miss Gemma Love will have her blood transfusion and then on Tuesday she will have an MRI under general anesthesia. We are praying she does not have any further damage to her liver or heart and for her ferritin levels to have come down (she is still over 3,500 after 2 years on meds. to lower it . Normal levels are between 10-300.)

Emilia went shopping with Mayzie this weekend ! They both did fantastic at the mall . Mayzie and Emilia will graduate on March 31st., then she will start having sleep overs and eventually move right on in to our crazy life. She will go from a very quite house to one filled with noise , laughter and a lot of hugs and kisses for her all the time . All the girls can not wait for her to come home permanently .
Emilia' next surgery has been scheduled for April 25th. She wanted to have her arm done first instead of her leg. Her Doctor felt this would be fine since both of her legs are stable right now. He will lengthen her arm and reposition her hand . She will be in the external fixator device for almost 6 months . The one good thing about this is she will still be able to go swimming all summer with it on ! Mayzie will be there with her through the surgery , recovery and many months in PT.

The one major thing I have learned over the past year and a half is Patience. I am the type of person that wants things done yesterday . Having to wait ,learn patience and give up control has been pretty difficult . But Teresa's Miracle is "IN Process" in Gods time , not mine . There were so many lessons we needed to learn first and God is making that very clear to us now . Without patience and perseverance I don't think we would be ready for this next step in Teresa's journey.

Our Week

The past week has been wonderful . Not too many Doctor's appointments and everyone has been feeling well. ( Well everyone except Gemma ). Her hemoglobin has dropped pretty low and she is feeling tired and very moody . The past few months she was able to go 4 weeks in between her transfusions but this past month she had a cold and it really wiped her out . She is having her transfusion on Monday and then the Ferriscan on Tuesday. We are praying her Iron levels have come down. With so many transfusions the side effect is excess iron build up in the body . It accumulates in the heart and liver causing damage .
Teresa had a good week and with all of the warm weather we were able to enjoy the beautiful sunny days playing outside .

Mayzie came to visit again with David her trainer. Next week we are venturing out to the mall for more training . Emilia and Mayzie are really starting to form a very close bond . It is wonderful to see her personality blossoming . She LOVES Mayzie !

Lucy is doing great and hasn't had any more stomach issues . Her test results showed she has a hiatal hernia and 2 ulcers. We are so happy it wasn't anything more severe.

Mary's fourth grade class has started practicing for their performance of The Living Stations of The Cross. This will be our fifth performance . I think we have just about covered all of the parts over the years . Eddy was Judas. Paul was Jesus. Alex was a Roman soldier. Grace was a weeping woman and Mary ... she is a cot person . What is a cot person you might wonder? With this being our fifth time , I should know what this part is but I couldn't remember. Mary had wanted to be Mary (Jesus's Mother) and was disappointed that she did not get that part but when I asked her how she felt about being a cot Person ( she brings in the cot for Jesus 's body to be carried out on ), she said she was very happy with this part because this is the part Jesus wanted her to play . She is such a kind sweet soul.

Three more weeks until we meet with the transplant team !!!!

(Just a fun fact...the girls LOVE seeing all the different country's where people are praying for Teresa. The 200,000 person to pray for Teresa was from Krakow Poland )

Climbing for 19 months...

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

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 .