Monday, March 25, 2013

Happy Spring !

 We had a beautiful spring day on Saturday .  We visited the Easter Bunny and had an Easter egg hunt.



And then today we had SNOW !




No one was complaining . The girls were  off of school and had fun in the snow .


Gemma is all better .  She ended up having to go back to the hospital last Friday after her accident in school because she was having some concerning  symptoms  .   This time we went to Hopkins because this is where all of her Docotors are . ( the ambulance had to take her to the closest hospital  and it wasn't Hopkins ) .
She ended up having a mild concussion .  Her hemoglobin was also checked because of the amount of blood she lost.  Luckily it had only dropped slightly .  Fortunately  she had just had her blood transfusion on Wednesday . 

Teresa is finally over her ear infection and cold . It took two rounds of antibiotics to clear it up .
It has been almost 9 months of waiting for her new heart .   We  never imagined it would take this long.   Even though she has had several offers, they have not been a perfect match .  Nine months ago she could walk up the steps and was just a little winded .  Now she can barely make it to the top of the steps . She stops several times to rest and when she finally reaches the top she has to lay down and rest to catch her breath .   We insist on carrying her but she is so determined to be independent and do everything herself sometimes she wins .  It really is hard to watch her struggle but she is so happy when she can make it to the top .

Nine months of  living in a constant state of fear , not knowing when and if we will get the call and "if"  Teresa will survive the transplant has been the hardest time of our lives .  We are trying to keep life as normal as possible for all of the girls .   Everyday is a gift from God and we don't take one minute for granted .
 Unfortunately Teresa has started having some anxiety about getting her new heart .  She doesn't want to spend a lot of time in the hospital .  She said it would take too long and she wants to be home so she can play Princess with Gemma.
To try and alleviate some of her feelings we went to the  Disney store and let her pick out a few princess night gowns to take with her to the hospital .  She also went to Build a Bear to make a Princess Bear to take along as well   .

We sure would appreciate some prayers for Teresa to have peace .



With  God all things are possible .

Monday, March 18, 2013

Believe in Miracles Fundraiser

Believe in Miracles was created by some wonderful people  to help Teresa on her journey to a new heart . 
On May 18th ., BiM will be holding a fundraiser for Teresa at The Knights of Columbus Hall in Catonsville .

http://www.facebook.com/events/544740608890533/?fref=ts
Believe in Miracles Fundraiser
May 18 at 6:30pm
Knights of Columbus Hall (1010 Frederick Ave.) in Catonsville MD

Believe in Miracles Fundraiser
May 18 at 6:30pm
Knights of Columbus Hall (1010 Frederick Ave.) in Catonsville MD
BiM will also be having another fundraiser on April 16th. at Sweet Frogs Frozen Yogurt on Rt. 40 and Rolling Rd. in Catonsville . 
WE are so grateful to everyone for helping Teresa on her journey to a new heart . 
The gift of life ... a new heart .    Organ donation truly is a miracle and gives so many people a second chance at  LIFE . 

Thursday, March 14, 2013

Gemma Rose

No ,Teresa did not have a heart offer today . 
For everyone who saw us leaving the parking lot very  fast  after school today , it was for Gemma .
Gemma had an accident in gym class and was taken by ambulance to the hospital .  She is home and fine now ,all stitched up.   She was so brave . She actually fell asleep while the Docotor was putting in the stitches .  That's my girl ...eating and sleeping, her two favorite things to do .

After leaving the hospital with Gemma, we headed to the pediatricians office for Teresa .  She now has an ear infection . This darn cold is hanging on and still causing her to be very tired .  Back to the pharmacy , more medicines and finally home .

What a week . Praying for a very quiet weekend .


Monday, March 11, 2013

Just A Cold

Teresa has had a cold for a few days and it was not getting any better so we headed up to CHOP this morning for a check up . 


The cold is causing her heart function to decrease and her lungs to be wet .   So to try and alleviate these problems she was started on a new medicine today .  Instead of staying in the hospital and possibly catching another nasty bug we came home and will return to CHOP  on Friday . 

Even though this cold has made her VERY tired and her breathing very labored ( her O2 is dropping to 62 when she plays ),  it has not stopped her .  She is like the energizer Bunny , she just keeps on going .  She does not want to miss anything . 

Today was Spa  day in the clinic !  She gave both NP's  a manicure including Steve .   She loves him !

Celebrating the little things in life are so rewarding !

Wednesday, March 6, 2013

One Winged Snow Angel !



                                              My One winged snow angel !


We sure didn't get much snow but it was still lots of fun !  15 minutes of fun  wiped Teresa out  but it was so worth it  .   She really wanted to go out and play too .

Saturday, March 2, 2013

Winter, Spring, Summer and Fall

Summer , Fall , Winter and  now Spring . I am getting ready to re pack my suitcase for our fourth season .

 It has been 8 months that Teresa has been waiting for a new heart .  We have been living out of a suitcase that has been  packed and repacked several times.  I don't think I will  look at a suitcase in the same way ever again . It use to represent vacations full of fun , happiness and relaxation with family and friends .  It now represents fear , pain and  suffering but most of all hope .  Hope for a better tomorrow .
This has been the longest journey we have ever been on and we have not even left home yet..

November 30,  the day Teresa almost had her new heart .  It has been 4 months since that night .  That night changed us all in many ways .
Teresa was so excited .  She was not scared or fearful .  She wanted to get her new heart so she could ride her bike and play without having to wear her oxygen .  As she was prepared to be intubated  I told her how much I loved her and I leaned over and whispered in her ear  " You are now the BOSS".     Teresa looked at me and said  " I love you more MaMa ".   This is the photo I took of her right after she said that .  In her eyes I did not see a little girl anxiously waiting to celebrate Christmas or her sixth Birthday .  What I saw was a very old soul in complete peace getting ready for the fight of her life .

I Believe In Miracles !