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 !