Taking a Breath

Thank  you all for your prayers for Emilia .  This surgery really caught us off guard .  We had no idea the infection was so bad .   She did great .  Dr. Standard removed the infected pin cleaned out the infection and inserted a pin in a new location to help stabilize the bone .    A few more months and she should be able to have the fixator removed and metal rods inserted , then only a cast for a few months.  The bone seems to be filling in and healing a lot slower this time as opposed to when she had her leg lengthened .   But she is handling it much  better now.

Mayzie looks like she has a long road ahead of her .  Last week Emilia was playing Frisbee with her . ( Frisbee and playing ball are her two favorite things to do . She walks around with her Frisbee in her mouth almost the entire day waiting for someone to play with her .  She also sleeps with it ). This time when she landed she slipped and twisted her leg.  We could tell right away she was in a lot of pain . She wouldn't put any weight  on it and she just laid around not even wanting to play .  Of coarse this happened on the weekend when  a trip to the emergency vet would cost hundreds of dollars , so we waited until Monday to see if it would improve .  We were hoping she had just twisted it .  On Monday she was the same and was still not putting any weight on it .  So off to the vets we went .   X-Ray, x-ray , x-ray and we have a diagnosis.  I wish it was as simple as just being broken but no... she has severe hip dysplasia in the left hip .  So off to the Veterinary orthopedic specialist .  No , she doesn't have severe hip dysplasia  in the left hip ... she has severe end stage hip dysplasia in BOTH hips ( bone spurs everywhere , bone on bone.. not good .)  So the bottom line ,  she needs hip replacement surgery .   We can not afford the $5,000.00 ( yes that's right $5,000) surgery  .  There is just no way I can justify going into debt for this when we are already so financially strapped for all of the girls medical needs.   The plan is to  have her rest, no running, jumping , going up and down steps for 2 weeks .  Treat her with anti inflammatory and pain meds and start joint  vitamins and herbs.   Since Mayzie NEVER exhibited any signs of hip dyspalsia  ( no pain or limping at all)before this incident  , we will  try to get her back to where she was before the injury , pain free and not limping .  We think she didn't show any signs of pain because she is so stoic.  She has been trained to help others , that's her job.   She is constantly looking for things to do or someone to watch and help.  When the girls are outside playing she herds  them into  a circle to keep them together ( She was not trained to do this , it is something she just started doing herself).  When Emilia came home from the hospital she ran right over to her smelling her and licking her and laid down next to her .  She could tell something had happened to her and would not stop licking her arm . ( OK , I know all you germ phoebes like me are saying really ?  But I didn't have the heart to make her stop .  She was simply taking care of Emilia the only way she knew how.)
It is ironic how Mayzie was trained to take care of Emilia and now Emilia will have to take care of her.  She has orthopedic problems just like her .  Maybe this is why they have such a  close bond.

Alex came home from school yesterday to help out with Emilia and said something that really made me laugh . ( he tends to have a very odd sense of humor) but this time I thought he was pretty funny .  " So we  have 5 special needs kids and now we have a special needs dog too? "  But I quickly reminded him that WE ALL are special needs , just in different ways .  We all have something  to learn from each other  and maybe God is showing us  something to learn through Mayzie .

So last week CHOP calls 4 times. When I read on the caller ID that it was from CHOP , my heart just about stopped .  On the phone was Dr. Shaddy asking if we would allow Teresa to participate in an NIH research study on children who receive heart transplants. But all I heard was " This is Dr. Shaddy from transplant ...(  I'm thinking do I cut him off and YELL "does Teresa have a heart ?") but I didn't  . I knew he would think I was totally crazy ( which I admit freely I totally am.  )  So I let him finish and at that point I put away my car keys, suitcase  and sat down and could breath again. ( yes , the stress is really starting to get to me. )
As he explained to me ,Teresa's care would not change in any way .  The group she would be in would depend on the heart she receives at the time of transplant.   The research study is comparing children who need plasma ferresses before and after transplant as opposed to children who do not get plasma ferresses . ( This is the process of filtering  the blood through a machine to remove all antibodies . PRA- panel reactive antibody -is the percentage of cells from the donor with which a candidates blood serum reacts. ). High PRA is not good .  In past years Doctors would wait and pass on hearts that had high PRA, but too many children were dieing waiting .  So now even if it  is not a good  cross match  Doctors will treat the children with plasma ferresse before and after transplant to lesson the rejection of the organ .  Children who have plassma ferresses have a %10 higher mortality rate after the first year.    The research study will try to pin point exactly why this occurs.
The question Ed and I were  having trouble answering was , do we wait and turn down a heart with high PRA  or accept it knowing it would increase the mortality rate .  The problem is Teresa only has a very short window of opportunity to get a heart .  If her valve leakage gets worse , her hematocrit increases ( it is already very high )  her Pulmonary hypertension worsens( it too is extremely high ) or she gets a virus , the fear is they would not be able to keep her stable and her window of opportunity would close permanently .
So how do you make that kind of decision with life and death ?  You can't or at least I can't . I won't . I am not in control , God is .  I know at the time Teresa receives her new heart it will be the heart from the donor that God has decided is for Teresa .  High PRA or not  it will be Gods decision .  So we told Dr. Shaddy that of course we would participate in the research study ( anything to help promote advancements for other children )  and that we would take the heart when it was Teresa's time .

This past weekend after we participated in the Donate Life  Run   we received a phone call from the community outreach representative  asking if they could use Teresa's story to help promote organ donation .  She had seen the poster we  made of Teresa hanging with all the other  family posters and thought her story would really help promote organ donation .  We go to the studio on Saturday to film Teresa's story .  We are so happy to be able to share her story and do anything we can to promote more organ donations.

She has come so far on this journey not by us but only by GOD.  I  have total peace knowing that God will give her the heart that HE intends at the time HE intends and give us the peace to accept it all.

What a week!

This past week was enough  to add more gray hairs to my head ( or as Mary   has said " Mom, your hair is REALLY gray. ")

We found out today that Emilia needs emergency surgery tomorrow morning .  She was  battling a pin site infection for the past 2 weeks and it is not responding to the 2 antibiotics . Her Docotor said the infection is spreading and the pin needs to be removed and replaced immediatley .  Hopefully when he does the surgery tomorrow he will be able to clean out all of  the infection .
We would really be grateful for some prayers for Emilia tomorrow .

This past week we also received some really   sad news about Mayzie .  As if  all this was not enough CHOP called 4 times in one week .  When I  see CHOP on the caller ID , well  my heart just about stops .

I promise to fill in the details as soon as I can catch my breath and get through tomorrow .

Photos-Dragon boats-Brittany's Hope

Dragon Boats / 5K

Dragon Boat Races, 5k fun run/walk and transplant team check ups, all part of our busy week . 

Last weekend our Daughter in Law Laura's Company came in 3rd place at the Dragon Boat competition .  The girls loved watching Laura compete in the race . 
This  weekend we participated in Brittany's Hope  5 k run/walk.  Brittany's Hope is a wonderful organization that helps to bring home special needs orphans.  Emilia is a Britts Kid , so every year we participate in the walk to help raise money for other orphans to be brought home .  This year she brought her best friend  Mayzie with her . She loved showing her to all the participants .  When someone would ask if they could pet  her dog, she would smile ear to ear  and show off her dog.  Mayzie has helped her in so many ways that we could never have imagined .  Mostly with helping her to come out of her shell . It's amazing what the love of a dog can do .

On Friday Teresa had her monthly visit to CHOP with the Transplant Team .  She had a fantastic check up . Her Echo looked great (well, great for Teresa ,no further signs of heart failure ) blood work and EKG also looked good .  Each month we are meeting a different member of the team .  This time we met the head of the transplant team.  He reassured us that Teresa was stable (at the moment) and should continue to be fine as long as she did not get any viruses . ( these could potentially damage her lungs more and could take her off the transplant list )  With Flu season coming and school and all kinds of new germs we are trying to be extra cautious to keep Teresa as healthy as possible .

School has been a big adjustment for Teresa.  It started out great with lots of excitement but that has quickly faded . She is having to get used  to not being the boss.   A concept that is very difficult for her .  She  can't understand  having to sit down and wait for everyone else  to figure out what day of the week it is and what the weather is outside .  She has already moved on to ... lets play , and that means dress up and houskeeping . Her 2 favorite things in the world to do .  We are also struggling with not being able to dress as a princess EVERY day for school .  She can't grasp why EVERY little girl in her class isn't dressing up as a princess too.  It is so funny listening to her talk about this .  She is one sassy mamma.  .  Friday after the Head of Transplant met her he said now he can see how she has made it this long . She has medically defied ALL odds of survival but her  iron will has carried her so far . 

Some people just go through their life planning for this or that and waiting for this to happen or that  but never fully living in the moment  .    Teresa embraces EVERY minute of every day . If she is not feeling well , is too tired or can't run and play , she simply finds something fun to do laying on the couch , making a fort out of blankets with Gemma or painting her fingernails for the one hundredth time . Always making the best out of the situation she is given . Yes, when she is not feeling well she can be quite the un happy princess.   But all we have to do is remind her that "Princesses" don't act like that and it snaps her right out of her unhappy state.

I read a quote from  Depak Chopra the other day -" The secret to a happy life is to recognize that no matter what the situation , there is a creative opportunity in it .  Also finding meaning and purpose in your life to make a contribution.  And ultimately the secret is to make other people happy. "

To make other people happy... When someone  in your life is taken away , you realize how much you miss them and needed them  .  But when someone is added to your life you realize how much you needed them all along and didn't even know what you were missing until they arrived.

For us this was Teresa. What an incredible gift she has been to us .  Stressful , anxious,  trying and at times very difficult but YES an incredible gift . One that I would not trade for anything .

Where do hearts come from ?

2 weeks ago the girls and I met with the transplant team to discuss what  a heart transplant would mean for Teresa.

I was having a difficult time finding just the right words to explain a heart transplant and everything that  would be involved .  I did not want to say too much but on the other hand I did not want to give too little information .  Mostly I was having a hard time explaining it to Teresa.  I did not want her to feel unprepared for how she would feel when she woke up .  To her going to CHOP has always been a fun event  because she had Mommy all to herself and we both enjoyed our special time together .  Even though every visit involved a blood test , she was OK with it .  Waking up from a heart transplant will be  very different .  We keep talking about how great she will feel after she gets her "NEW" heart  but really haven't mentioned how she will feel after surgery .
  Meeting with the team was very beneficial not only for the girls but also for me .  At first everyone was very quiet and not talking .  Finally Mary started asking some very deep questions. What the team suggested was for me not to tell too much .  Just answer the questions or concerns the girls may have.  If they want to know more they will ask .  Answer each  question with positive outcome . ( Mary asked if Teresa would die ),  Their  response was that they and all the Doctors would do everything they could possibly do to make sure Teresa was OK.  .  When the question of where Teresa's new heart would come from  ( I can not remember who exactly asked this question ) , Emilia raised her hand and said , " I know where hearts come from ... GOD ".  With out losing it in front of all the girls , the team and I all agreed that Yes Emilia, hearts do come from God.   Out of the hearts of children the simple and pure truth  .  Here I was worrying about how to explain in detail everything and they  had simply figured it out already .

Teresa always talks about when she gets her new heart how she will not have to wear her oxygen or how she will be able to run and play longer but the other day after school she said , " When Jesus gives me my new heart I can drink out of the water fountain in school . "
This is such a   normal thing for children but for her she is NEVER allowed to touch a public water fountain anywhere because of germs .  It made me stop and think wow, such a simple little thing could  bring so much happiness to her .

This week we are gearing up for our second week of school .  The first week Teresa did very well.  She came home a little more tired than normal but we are  hoping as she adjusts to the routine her body will be able to adapt .  She really loves school and  all her new friends .