Gemma Love

Gemma has changed her name from Gemma Bartlinski to Gemma Love.

Last week she came home from school with all of her papers signed Gemma Love. When I asked her why the name change , she said " because I Love ,Love. " . Gemma can be the QUEEN of drama but one thing is for sure , she is a LOVE bug. She gives the biggest hugs and kisses . She loves deeply and is quick to give hugs to even new friends. Her little sly smile turns into a belly laugh that captures everyones attention . This name suits her perfectly .

Very optimistic results

Thank you everyone for your thoughts and prayers for Teresa today . The news is very optimistic. Her heart Cath. results showed improvement in the vasculature of her lungs and her heart function has improved ! We are very happy with these results.
Even though this is Fantastic news ( her lungs are moving in the right direction) she is not to the point of being able to receive a heart transplant ...yet. Dr. H feels Single Ventricle Palliation (A Glenn or Fontan procedure) will not ever be an option for her . He thinks if her lungs continue to show improvement over the next 6-9 months she will then be at the point of being able to survive just a heart transplant. In 9 months she will have another cath. to see if her lungs have improved further or if she has plateaued. For now her meds.will be tweaked a little and she will be watched closely .

We are very hopeful but for now we have to let it be and be patient as God continues to slowly heal her lungs. A year ago we were told her lungs were irreversibly damaged and she most likely would never get to the point of just a heart transplant. Only by God ...

Mayzie

Guess who came to our house today ?
Mayzie!!!!!
Almost 2 years ago , Emilia was matched with Mayzie by Paws 4 People Foundation . The dogs are trained by inmates at a prison in West Virginia. Emilia and I traveled there for a weekend to meet several dogs . Emilia was introduced to three dogs. The first one came in looked around and showed very little interest in her. The second dog seemed to be afraid of her wheel chair and brace on her leg( she was having her leg lengthened at the time). The third dog (Mayzie) , walked in smelled Emilias chair ,wagged her tail and jumped up on the side of her chair to kiss her . We knew this was a perfect match . For the past 2 years Mayzie was trained to meet Emilia's needs for future surgeries .For almost two years she waited so patiently for Mayzie to graduate . Finally , Mayzie was ready to transition to our family ( No easy feat) . She is not accustomed to being around so many children or another dog (Annabelle) that was trying to attack her. She will slowly start visiting us and slowly become acclimated to our house.
Today's visit went pretty well. Emilia loved learning all her commands and showering Mayzie with love . We are hoping that Mayzie will not only provide Emilia with help while she undergoes several more surgeries on her arms and legs but that she will also serve as a "Bridge" between Emilia and her classmates .
Paws 4 People is a wonderful Foundation that provides service dogs to people with physical and mental disabilities . ( Paws 4 Vets provides dogs to veterans returning from war with physical disabilities or from the stress associated with war).

Tomorrow will be a very important day for Teresa. The results from the heart cath . will hold two paths for Teresa's future .
If you find the time in your day to think of Teresa, could you please whisper a prayer to Jesus...we would be VERY grateful .

Friday The 13th.

Friday the 13th. turned out to hold good news for Teresa.

I am a little reluctant to post this because I am feeling a bit confused .
Last month while Teresa was in and out of the hospital being treated for further heart failure, fluid retention, low oxygen saturation and low energy , she was seen by 2 different Doctors who were covering for Dr. H while he was on vacation . They were very concerned with the direction that Teresa was headed. They thought that this could possibly be Teresa's new level of normal for her and were not very optimistic.

Today Dr. H was back from vacation and reviewed all of Teresa's reports and tests from last month and tests done today . He was pleasantly optimistic. (His words ). As he explained it to me , her lungs were "wet" because the new meds. were doing their job . Her heart was pumping more blood to her lungs and dilating them more. Today also revealed that her heart function had actually improved from last month and her severe tricuspid regurgitation was almost completely gone . At this point I was sitting there feeling VERY confused and made sure that Alex was paying attention so he could relay all this information to Ed too.

Dr. H feels Teresa is ready for the next step . That is one of three things.
1. Lower her meds. and do nothing ( she can not stay on this high of a dose because it is causing her heart to pump too much blood to her lungs)
2. try to repair her heart.
3. a heart transplant.

The next step is to re cath. her on Wed. and see exactly what her numbers are in her lungs and heart and see how much the meds. have helped. This will give him a better idea on how to proceed.

I am going to wait until wed. when we have further concrete results until I express any type of joy . The highs and lows are just too much and I want actual numbers and not, "well, we feel like this is happening ... " I need more than a feeling .

So for today , she is still on oxygen all the time because her lungs are still wet and her o2 is very low, (she is retaining fluid caused by the meds.) so her lasix is being increased . We will return to CHOP on Wed. morning , have the heart cath. , stay one night and come home on Thursday , hopefully with very concrete fantastic news . Then we will celebrate with great joy . Until then I am remaining cautiously optimistic.

Dreaming...

I dreamed when we took the huge leap of faith to adopt Teresa that just maybe her medical condition was wrong. I dreamed just maybe she didn't need a heart /lung transplant. Just maybe we would bring her home, love her unconditionally , show her all the joys of having her own family , take her to the best Doctors and Hospitals and they would say , "We can help to fix her broken heart", AND we would all live happily ever after ... But that dream is slowly fading.

For a while it seemed like just maybe, there would be help for her broken heart . Or maybe that is just what we chose to hear. Maybe we did not want to hear the BUT...

Teresa's health has definitely deteriorated over the past month . She now requires oxygen full time and she tires very easily .

Have you ever closed your eyes , prayed for a miracle, dreamed of a miracle , only to wake up and realize that dream has not come true?

We felt we were so prepared , so ready to accept any outcome . As long as we loved her everything would be all right . Whatever was Gods Will we would accept , and we still do , BUT ...

Last week we were advised to prepare an Advanced Directive plan for Teresa. I am not ready to do that . That Is Gods Job. The plan for her life has always been in His hands , not ours.

Someone asked if we would do it all again . Would we have adopted Teresa knowing all the pain and sacrifices . The pain was never hers to carry alone. The sacrifices were ours to carry . And YES, we would have chosen to do it again had we known then what we know now. Teresa would have never known the love of having her own family and we would have missed the joy of seeing life through her eyes even though it came with tremendous sacrifices .

Sometimes Gods Will can only be viewed through tear filled eyes ...

2012

I have never been so happy to see a year end ! We are praying 2012 will be much more peaceful .

We came home from CHOP late Friday night with Teresa. Grace had been sick for 2 days with uncontrollable diarrhea and severe cramps . By Saturday morning she was VERY sick. I called the Pediatrician and she recommended going right to the ER. She was severely dehydrated and tested positive for Salmonella poisoning . Unbelievable . We made it home late New Years Eve so tired we just went to bed . We just can't seem to get a break . We were in 3 different hospitals in one week . Today Grace was able to slowly start eating again without severe cramping .

Teresa is doing OK.. She is not back to her base line yet and still requires a lot of oxygen . But she is feeling much better . Tomorrow we are meeting with the school to ask for an aid to accompany her while in school . I am hoping this will be an easy process and they will not give us a hard time . We have a letter from her cardiologist requesting the service and also one from the pediatrician .

This Christmas seemed to come and go so fast . I felt like we were trying to catch it but never fully grasping it . We missed doing so many family traditions with the girls because of all the illnesses and trips to the hospital . We totally missed out on making cookies too.

We are praying Teresa will not get salmonella. Bleach and hand sanitizer have become my new best friends.

We will go back to CHOP on January 13th. , hoping Teresa will be able to resume her journey to a new heart .