Good news and Bad News

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

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

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

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

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

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

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"

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

Christmas on 34th. Street, a Baltimore tradition.

calm again

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

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

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

Christmas on The Potomac

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

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.

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 ?

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 !

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

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

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

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

Mary

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

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 .