Lucy

We had been postponing Lucy's cleft palate surgery for a few months but after meeting with her orthodontists a few weeks ago he suggested that  we not wait too much longer .

Lucy was very nervous about the surgery ( alveoloplasty   and rhino plasty ) . Mary had the same surgery for her cleft palate last year so Lucy kinda new what to expect.   Mary breezed right through her surgery but Lucy ended up having a few minor complications .  She had a very bad reaction to the anesthesia  and that made her recovery a little slower along with some bleeding issues.

  The third day post op she finally turned the corner and started feeling better.   The hospital was having their annual Turtle Derby Fundraiser and Lucy was feeling well enough to venture down to the court yard to watch .

 Her little face was so swollen she couldn't talk or smile .

The Clowns also stopped by and brought lots of happiness  !

Right now the most painful part is the bone graft taken from her hip .  We are praying the graft takes and will not have to be repeated in a few months.

This weekend we had a wonderful visit from Paul and Meghan .  They came home for the weekend for Megs friends wedding . 

The girls always love when they come home .  Just a few more months and Paul will graduate and be a Doctor of Chiropractic !  We are so proud of him following in his Father and Grandfathers footsteps .

Little Miss T had a pretty good week.  We will head back up to Philly next week for another check up .

Gemma Rose will start her new chelation medicine this week along with her daily chelation infusion to hopefully lower her Ferritin  levels . We are praying she does not have the same bad reaction that she had two years ago when she tried this med.
 She  still goes to Hopkins every three weeks for her blood transfusions . We are  hoping this summer we can stretch it to every 4 weeks but if not we will make it work out .

What a blessing to have everyone home and doing so well !

She Made It !

We have had quite the week .  Last Saturday the girls attended the Taylor Swift concert . ( Thank you  Grandpop).  Teresa woke up at 5:30am  ready to go . She only changed her outfit twice and finally settled on her sparkly silver dress .  By 7:00pm when the concert started I thought she would be exhausted but she was full of excitement.   The concert was "FABULOUS"-Teresa.  She loved every second of it .  I think the people sitting next to us had more fun watching Teresa perform every song than watching Taylor Swift.  Teresa took her light stick and used it as a microphone and sang and danced and smiled the entire night .  It was a priceless memory .  I wonder if Taylor knows how much happiness she brought to one little girl that night .

"Look, look at her sparkly red guitar and microphone ! I want that for my Birthday "- Teresa
(the guitar had sparkly hearts on it too. )


On Sunday Teresa started with a stomach bug and it caused a few problems and landed her in the hopsital.   By Tuesday she was feeling better and she made it home just in time for her recital dress rehearsal . She was so afraid she was going to miss it .

Friday we headed back up to CHOP to make sure all of her tests were  back to normal .  She also had a stress test done .  Her oxygen dropped to 37 during the test but do you think this would stop her ?... No way, she was determined to pass this test so she could dance on Saturday in the recital .  She had to lay down and rest for several minutes afterwards but then popped up and said "O.K , I can dance !"

Back in September when Dance classes started we were unsure if Teresa would be able to dance in the recital . We were unsure if she would have the energy or the gift of a new heart by then.

Saturday was the recital and Teresa danced in it!  She was so excited .  She had been looking forward to this day for quite a while and she made it !

On Saturday evening we ran from the recital straight to Teresa's fundraiser that  our friends were having for her .   We have been so blessed to live in such a wonderful community with so many amazing friends .  It really touched our hearts to see so many friends , neighbors , teachers , transplant teams ,church and family come out and support Teresa.   Your love and prayers are a tremendous gift to us all !  Thank you !
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This week Lucy is having surgery . We would be very grateful for prayers for her .

Prayers , IV Fluids and Chinese food !

Prayers , IV fluids and Chinese food,  are what makes this girl feel better.

Teresa was admitted to CHOP on Monday because of a few complications from having a stomach bug over the weekend .   Today she was feeling much better especially after having  Chinese noodles for lunch . 

Yes , that is her Taylor Swift  T- Shirt from the  concert .  She has been wearing it for 3 days .

First Tooth

Guess who lost their first tooth ?

Teresa was not too happy about it at first... then when Lucy told her the tooth fairy would come tonight and leave her money ...she was VERY happy... why ... because she wants to buy a pair of sparkly high heeled princess shoes!

The Tooth Fairy  might just go broke on this little girl tonight .

Ballet Pictures

Yesterday was ballet picture day !
Teresa had not been feeling well over the weekend and was still not feeling well on Monday morning  but there was no way she was going to miss the ballet pictures .   I think she willed herself better because by Monday afternoon she had a lot more energy and was breathing better .  
For the recital she is going to try and dance without her oxygen .  Dr. H said we should do several dry runs first .   So far so good ...

 

Anonymous ...

To the  anonymous  person  who left us  an unkind comment ... I debated whether or not to respond to you  .  Until you have walked a mile in our shoes  and God forbid  have a child waiting for a heart transplant then you will never  know how we feel . Yes, Teresa is looking forward to dancing in her recital .  She loves to dance . She needs something to look forward to , it is what keeps her going .  And yes she is looking forward to seeing Taylor Swift . She has had to sacrifice and suffer so much in her little life time  .You will never know the daily struggles she has to contend with as she struggles for life  . She deserves  to look forward to some happiness by  doing something she loves !

Transplant is a gift that one family gives to another .  It is a miracle that we do not take for granted and we will cherish forever .  The gift of life for one means the end of life for another .

We have asked for prayers for Teresa to receive her gift of life AND we have also asked for prayers for the family that will give Teresa a second chance at life through their tremendous gift .We are not praying for another child to die so Teresa may live .  We are praying for Gods Will to be done .

To your friends no explanation is necessary , to your enemies none will do ...

Just an O.K. Visit

Today Teresa 's check up was just so so .
She has a cold and because of that her blood work was off a little .  Her heart  function has declined but Dr. Hanna thinks this is because of the infection .   She was started on an antibiotic and her diuretics were increased to try and take some of the added stress off of her heart .
The good news is she gained 1POUND !!!!
We still can not believe it has been 10 months of waiting for a new heart but I know God knows the day and time .
Dr. Hanna said that most of his patients receive their transplants while he is away on vacation ,  since he is leaving tomorrow for vacation , he is predicting she will get her new heart this week .

This would probably be the worst week possible for us because next  Saturday the girls are going to see Taylor Swift ( for Christmas Grandpop gave the girls tickets to see her on May 11 in D.C.).
The girls also have their ballet recital on May 18th. .  Teresa has been so excited about dancing on stage . She can not wait to wear makeup and put on her costume .  This song (that is playing ) "How to Believe" by Tinkerbell  is the song they are dancing to.

The one thing that I have learned over the past 10 months is that I am not the one in control , God is .  Teresa's new heart will come at the exact time that God has planned  .
                           ( To hear Teresa sing Party in The USA , pause the music at the bottom .)

  Taylor Swift sent Teresa an autographed poster .

Monthly CHOP visit Friday

On Friday we will travel back to CHOP for Teresa's monthly check up .  Praying that everything goes well and no major changes to her heart and lungs .

We had a great time last weekend in PA.  with Paws 4 People's Puppy Palooza .   This is the organization for Emilia's service dog Mayzie .     They are an amazing organization that helps so many children and adults .

We are so happy to be a part of the Paws 4 People family .