Great Time with Great Friends

We had our dear friends come to visit us today from Florida ( they also happen to be Grace's Godparents ).    We always have such a great time with them and the girls really love all the goodies they bring them from Disney World ( Louise works for Disney ).

This week will bring many changes to our family .  Mayzie is coming to live with us permanently .  Emilia is beyond excited .  Mayzie helped her so much this past week with her surgery .  She has handled the recovery much easier with Mayzie by her side (or in her case actually in her hospital bed with her ).
Mayzie had lots of visitors while in the hospital . Not only did she bring happiness to Emilia but also another little girl having surgery .

Gemma will have her next  blood transfusion on Thursday  . The week before her transfusions she becomes very tired  . It is such a balancing act with the transfusions (which make her feel better ) and the iron overload that comes with more transfusions .  If we transfuse sooner , she feels better but in the long run she receives more iron and the iron is already starting to affect her liver .It has been such a slow process with her daily infusions trying to lower her Ferritin levels which are still EXTREMELY high .    Today she was so tired she fell asleep while eating . Anyone who knows Gemma (AKA - Buddha Belly ) knows she LOVES to eat and for her to fall asleep while eating was not a good thing . 

On Friday we will finally know if Teresa will be listed for a new heart .  The waiting has been VERY stressful . I wish I could say it has been easy but it hasn't . I am worried about her being under anesthesia for twice as long this time because she will also have  an MRI along with the Heart Cath.  . We have moments of peace and hope but then the worry creeps in filling my mind with doubt  and fear . 

If you could find the time to say an extra prayer for Teresa this week and especially on Friday morning  we would be very grateful . Please help us to have a miracle on Friday ! Without sounding too pushy ( OK I am going to be pushy ) PLEASE ASK EVERYONE YOU KNOW TO PRAY FOR A MIRACLE FOR TERESA ON FRIDAY !

Thank you !

June 1, 2012

June 1, 2012 ,  this is the day that we will find out if  Teresa will be listed for a new heart.

It's hard to believe that  after almost 2 years of searching and trying to find some sort of hope or a cure for Teresa's heart and lungs  we will finally have a answer .  On May 31st.  Teresa and I are traveling to Philly for pre op testing and then very early on Friday June 1 she will have a cardiac MRI followed by a heart Cath..    She will spend one night in the cardiac ICU and we will return home on Saturday .
We are praying for a miracle but are at peace with Gods Will  should it be for her not to be listed.
The 2 years we have spent searching for a cure  and researching everything there is to know about Teresa's heart  condition has left us ultimately right back where we started from , totally dependent on God for an answer . Yes , the Doctors will perform the tests and give us their conclusions , but ultimately it will be up to God .  It will be a miracle if Teresa can be listed for a heart since this is what we were told 2 years ago by not one hospital , not even two hospitals but MANY .
I know God has great plans for her life , however long it may be . It will be to glorify Him .

This weekend Teresa was able to cross off one more thing on her ( well actually our ) list of Life's  Treasures. This is a list of things that every little girl should experience in her lifetime .
Today Teresa ( and Mary and Lucy ) had their dance recital .  Teresa absolutely LOVES dance class and for one year she has been looking forward to this day .  The make up  , hair , costume , was all too much for her to take in .  The excitement  she felt today preparing for the recital was so sweet .  She couldn't stop admiring herself in the mirror all morning .   We were so happy for our tiny dancer !

Miss Lisa ( the girls dance teacher at Turning Pointe Dance Studio) gave Teresa a gift today that was priceless !  Thank you  Miss Lisa for making another one of Teresa's dreams come true !  We are so grateful to you !

This week Emilia will have her second surgery on her arm . Please pray for her as she has been having a lot of difficulty adjusting to the fixator and the size and weight of it all .  When she had the fixator on her leg two years ago she did so much better .  I'm not sure why the change in her but we are  praying she will start to have an easier transition since she will have it on for another 6 months .  Mayzie definitely helps when she is here ,  her whole attitude and outlook changes  . Luckily Mayzie is coming to the hospital on Wed. and then will  come to live with us permanently the following week .

We would be so very grateful to everyone if you could join us in praying for a HUGE miracle on June 1 for Teresa . 
To all of our friends , adoption community and  Internet friends who we only know from your kind words,  we are so thankful to you all for all of your support and help in spreading the need for prayers for Teresa.

"Where there is great love , there are  always great miracles "-Mother Teresa

Patience is a Virtue

What a crazy week we had . A few days after coming home from the hospital with Emilia , she decided to take apart the fixator.  During the night she unscrewed almost all of the nuts and bolts holding the fixator together. The next morning we found nuts and bolts EVERYWHERE and she was not talking . It seems she became a little bored and thought it would be cool to unscrew everything . Luckily she did not do too much damage and everything was able to be re attached . We have since put the fear of Dr. Standard into her (along with a few other fears to keep her from touching it again ). Dr. Standard actually thought this was pretty funny since they have never seen a child do this before. He said the saving grace was that the ulna was not surgically seperated yet and this this prevented her from being in excruciating pain . ( the first phase of the surgery was to seperate the distal radius and reposition her hand . Phase two will take place on May 23 to seperate the ulna and start the lengthening process). So far so good . She has not attempted to touch her arm at all ! ( Alex is studying to be an orthopedic surgeon so Doctor S. said it would be OK for him to shadow at Emilia's next surgery . He will also spend a month shadowing in the clinic and other surgeries. The surgeries Dr. S does are very complex and unusual , so Alex is very excited to see procedures he would not be able to observe elsewhere.)

Teresa... I was patient . I really was . It helped that I was very busy with Emilia's surgery and all the mishaps along with a lot of Doctors visits in the past few weeks for all of the girls. Not that I was ignoring her health or severity of her condition , I was just letting God be in control . Everything that must happen for a transplant , along with everything that must be in place at home is tremendous . There is no way I could even begin to orchestrate any of it . I knew when the time was right in Gods eyes CHOP would call and things would move on . God knows that patience is not one of my strengths . I wanted to be on the phone weeks ago calling CHOP and scheduling everything asap. But it somehow did not feel right .( it was almost as if God was saying, " Just give me a little more time ") . I needed God to tell us the next step and when it would be . So I was patient and God took care of the details . We are going to CHOP on Monday for tests, (EkG., Echo ,blood work ,and a stress test ) and visit with Dr. Hanna . After this the MRI and Cath . will be scheduled. This particular Cath and MRI are a very big deal . This will be the determination as to whether Teresa will or will not be listed for a new heart . These 2 tests will calculate the amount of pulmonary blood flow. The benefit to the transplant team, and to us, is that we will have two independent ways to calculate the health of the lung vascular bed. The risk is that it is a longer procedure and longer anesthetic, by about 2 times, along with a longer recovery time . We are very optimistic that Teresa's lungs have improved and she will be listed for a heart . We are gearing up for another very emotional week. The one thing that has never changed over the past 1 1/2 years is Teresa's magical personality . Her sweet little crooked smile and sassy personality along with her strong ( did I say strong , I meant S T R O N G ) Will have brought us so much joy (and at times much frustration too) . Her strength has given me strength to face many challenges . There have been times when she has not felt so great but she has never lost her LOVE for life. She wants to do EVERYTHING and does not like it when she is told no . We are still working on who is the boss , me or her , but I have told her when it becomes time to really fight and be strong ...SHE will be the BOSS, along with GODS help . Praying for Teresa's miracle to happen very soon and for our "Happily Ever After"...