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 .

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 . 

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 .

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 !

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 .

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 !

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 .

Monday

We thought we were going home today  but Teresa needed to have a pulmonary angiogram CT  .  We tried it without sedation but the Boss decided she did not want to lay still. So now it has been rescheduled for Tuesday morning with sedation  .  
The CT is being done to see why her left lung is only receiving 30% of oxygen . 

For the most part she has been doing really well .  She is tolerating the nightly feeds and Ed and I have been trained on how to administer them and insert the NG tube.   She does not like the NG tube  at all and has voiced her opinion that she IS NOT going home with it .   She doesn't want anyone to see her with it .

Today she really enjoyed the  arts and craft therapy session .  The art therapist came to her room and spent a lot of time with her . She loved it .  The therapist commented to Ed and I that she thought Teresa was  special and had a very engaging personality .  Teresa  also spent a lot of time with her wonderful nurse  while Ed and I were in "Class" to learn about the NG tube .  Apparently they had a very lengthy conversation about everything .  When the supply person came in her room to restock her medical supplies , she informed him that it was O.K. with her if he used her hand sanitizer and that he could come back and visit any time .  . She enchanted everyone she met today .

We also had a visit today  from a Blog friend and her two beautiful daughters  . Teresa loved visiting with them and showing them all  her special treasures that she keeps in her fabulous purse .

Hopefully if all goes well tomorrow we will be headed  home !