Ballet

Teresa and Gemma tried on their recital costumes yesterday .   They both were so excited .  I have not told Teresa yet that she may not be able to dance in the recital .  It is in may.  We are holding on to hope that she will have her new heart by then ...

Believe in Miracles !

CHOP visit

Today's visit at CHOP was pretty good .  Teresa's heart looks the same ( which is a good thing , not any worse ) but because of the teeny tiny virus she had two weeks ago , her breathing is still heavy when she plays and her oxygen sats. drop into the 60's .
  This has been a very bad year for viruses .   Even with getting the flu vaccination ,  cleaning , taking shoes off in the house, washing hands very frequently , and practically bleaching everything almost daily , the girls are still bringing home lots of nasty viruses .  Lucy has been the hardest hit with bronchitis,  pneumonia and asthma attacks almost every other week it seems . Last week she had a very bad stomach bug.  Luckily Teresa has been able to avoid catching any of these bugs.  

Teresa had a fabulous time painting the Nurse practitioners finger nails  today during her check up .  I wish I had gotten a picture of it . HE is such a good sport . Luckily she painted them blue !

I BELIEVE in MIRACLES !

2 Pounds !

Do you see what I see ? .... 2 pounds of TUMMY !

Teresa has gained  2  POUNDS in one month !   YAY !

Charley's Heart

Look what  came for Teresa tonight .
"RedButt"
On Christmas 2010, heart warrior Charley Ritchie received a very special  monkey so lovingly named "RedButt".  After earning her angel wings the following May , her family started Project RedButt as a way to honor their little girl and give back to the heart community .  Since then Charley's Heart has sent monkeys to children  with congenital heart defects all over the United States .
Thank you Charleys Heart !
Charleysheart.com

Teresa has lovingly named her monkey , Mr. Pinky !

Happy Chinese New Year !

                                                          Jia Yi in orphanage 2009

                                                      Jia Yi is on the end in the light pink dress 2013!

Teresa is feeling better .  The fever turned out to be the begining of a minor cold .  Right now it is not too bad  but it is really making her tired .

On Saturday we celebrated Chinese New Year with our local FCC.  The girls really enjoy going to this every year so I am so glad Tersea was feeling better and could enjoy it .


It was a very joyful day because we met the family that adopted Jia Yi .  Jia Yi is a little girl that we met in China 3 years ago when we delivered Christmas stockings to her orphanage .    She really captured our hearts with her sweet little voice and joyful smile .  She had just had surgery on her legs and could not walk but she was so sweet and happy anyway .  When we came home from China we started advocating for her to find her family .  The orphanage had not yet started her paperwork so she was not yet adoptable . We had our friend push to get them moving on it  and after a few months her file was released and a family who happens to live close to us adopted her !  This is such a blessing because we never thought we would see Jia Yi again .

Jia Yi's Orphanage is also the same Orphanage that we found  Baby Josiah starving to death . This little baby was laying all alone in the corner too weak to cry  But not too weak to smile and lift his hand to be LOVED !  We had him moved to Lynsay and Bills Home and they nurtured him back to health .  Sadly last year he was returned to this orphanage where he still waits for his forever family to bring him home .  He is now 3 1/2 yeas old .  Could you be his Mother and Father   ?

Almost a great week

Well, it was almost a great week .   Since coming home from the Hospital , Teresa was doing great .  She returned to school for two hours a day , returned to ballet class and was feeling really well ...until this evening .  It started with her saying she was cold ( a big red flag , because she is never cold unless she is getting a fever ) .  Sure enough two hours later a 101 fever .  Her breathing also became much more labored .  Praying this is not anything serious .

Last week was such a busy week . It seemed like everything was falling apart in the house at the same time . Leaks , floods and a huge mess ... but we were not going to be discouraged.  Too many happy events were happening to stay focused on that other stuff .  Grace celebrated her Confirmation , Mary and Lucy enjoyed some special time with Dad at the Father /Daughter Dance at School and Teresa discovered that she loved shooting a bow and arrow like Brave . Teresa also decided that she was not going to buy shoes anymore  at Payless because they did not have a big enough selection of fabulous sparkly shoes . The only store she wants to shop for shoes at now is the Disney Store  because almost all the shoes there are princess sparkly shoes .

Lucy's surgery for  next week was canceled ( she was to have her cleft palate repaired with a bone graft from her hip )  . The transplant team felt it would not be a good idea to take Teresa off the list for 4 days while I was in the hospital with  Lucy.  ( just in case she had a perfect heart offer we did not want to miss it )  Since I can not be in two hospitals 2 1/2 hours apart at the same time  ,  we all agreed to postpone Lucy's  surgery a few months.

Gemma also had a Ferriscan of her heart and liver last week .  For the past two years her iron levels have been dangerously high ( from receiving blood transfusions for 6 years every three weeks , the excess iron accumulates in the liver and heart ) .  She will have her blood transfusion tomorrow and we are praying her results from the scan are much lower than last years results.

                                                 BELIEVE IN MIRACLES !

1A Again

Teresa has been re listed as status 1 A again.  She did not lose her place on the list and will resume her wait from the time she was off the list.  
We spoke with the Transplant team and discussed all of the results from her recent tests.   Everything seems to be the same , not worse but not better either .   The transplant will still be extremely high risk but worth taking the risk because this is her only hope . Her pulmonary pressure is still very high and her PVR ( pulmonary vascular resistance ) still responds a little  with oxygen and nitric oxide.  She is expected to struggle for a while as the new heart adjusts  but we are hopeful ...
We are praying for a very strong heart , no complications , very little time spent on ECMO , for the new heart to be able to adjust to the high pulmonary pressure ,for Teresa to stay strong and for the donor family  to have peace .

Home

We arrived home very late Tuesday  night and Teresa has been doing fantastic.  She bounces back so easily from everything .   She did great with the CT  on tuesday and is still tolerating the nightly feeds.  Hopefully soon we will see more weight on her tiny little cheeks. 

For being so brave while she was in the hospital and having such a positive attitude,  we promised her she could go to the toy store and pick out a toy .  So today we went shopping for a special toy .  And what does she pick ... a $4 dollar pair of sparkly dress up shoes !  This girl definitely has a shoe fetish.

We are still waiting to hear from her team of Doctors regarding  the results from all her tests .  When we left the hospital they said they were optimistic but were waiting to discuss the final results until everything could be reviewed with the entire team .   We are trying to be patient and enjoy the weekend together and ... The Superbowl .   Dad is a HUGE Ravens Fan and has brain washed all the girls into loving football also .