Friday, July 13, 2012

Living on The Edge

Our family is yet again adjusting to another "New Normal".  Living on the edge...  waiting , wondering, hoping, praying and  ready to RUN to Philadelphia .

Our life is filled with a LOT of stress right now as we prepare for Teresa's heart transplant BUT it is also filled with hope and for this we are eternally grateful  !

The girls enjoyed Vacation Bible School at our church this week . We also have been spending a lot of time just hanging out at our community pool , soaking up every minute of summer time .  Since our future is about to change drastically , we are trying to enjoy every second of each day together .  Playing dress up is Teresa and Gemma's favorite thing to do .  They must change at least 10 times  each day into different princess outfits.

We met with a member of our church today who  is organizing help for us ( caring for the girls and meals), while Teresa is in the hospital .  It is very humbling having to ask for so much help .  If we had the funds we would simply hire a full time nanny , but that not being the case , we have learned yet another lesson in humility .   If you are local and would like to be added to "Teresa's Team of Helpers",    please just send me an email and I will pass your name along to the team .

As part of a fundraising effort to cover medical expenses, travel back and forth to Philly and lodging while in Philly we are giving out inspiration bands for a donation of $2 .00 each .  They are red and say -BELIEVE IN MIRACLES   -  TERESA -
If you are interested please email me .







Wednesday we will venture back to Philadelphia for what will now become a monthly trip  .  Once  a month Teresa will be thoroughly evaluated to make sure she is not slipping further into heart failure . If this happens then her status on the transplant  list will be changed to a 1A (top of the list ).   For now she is enjoying summer time , princess tea party's , dress up , swimming, catching lightening bugs, snow balls, and being a princess.  Life doesn't get much better than that !

Thank you to EVERYONE for your continued prayers, love and support.  There is no way we could do this alone .


11 comments:

  1. It is sweet to share this hope with you. We will keep praying for Teresa and your whole family.

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  2. I would love to contribute. Send me your address and I can send a little to help. Best,

    Holly Arnold:)
    bhgeddda@aol.com

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  3. Praying for you all! We are 1/2 an hour from Philly. If you need anything, let me know. You can stay here too, if that helps.
    God bless you guys!
    Diane

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  4. Praying for the little sweetheart here in Colorado.

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  5. Continuing to pray for Teresa and the whole family. Wish I lived closer so I could help. The best help I can provide, right now, is to pray for this little princess as well as for the rest of your family. All the girls are so precious. Love to all of you.

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  6. Dear Ann,

    We will continue our prayers for Teresa long after her heart is fixed. We know it will happen.

    God bless all of you,
    Lee Ann

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  7. You and your family amaze me - shoot me an e-mail when you can - I'm in on the wrist bands! aussie @ fuse dot net!

    hugs - prayers - aus and co.

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  8. I've been reading your blog for quite some time now, but don't think I've ever commented. A few weeks ago you were on my mind. It was right after you were given the YES for transplant. You see, on June 19th my 6 year old great-niece Destany was being removed from life support to see how she'd do on her own. She didn't - she had no brain response at that point and didn't breathe on her own. She was placed back on life support and the decision was made to donate her organs. I sat with her mom as we all said goodbye. My beautiful niece who days before was running and jumping, dressed up in her princess finest, now looked as if she was sleeping. We had planned a HUGE princess party for her that we never got to have. Here she was...she was healthy and pink - resting comfortably while machines did the work.

    While we were saying goodbye families in other parts of the country were getting THAT CALL. To come to the hospital and get ready. Today could be their day! I couldn't help but wonder if Teresa would be be so lucky, because my niece had a heart of gold and Teresa deserves as much. Every child does. I knew that while we waited, families were urgently racing to the hospital to get prepped - to wait.

    And then the worst happened. It was bad enough that we lost Destany, but finally the powers that be told us that because Destany had DIPG (a very aggressive form of brain tumor that took us from diagnosis to loss in a matter of 5 days) her organs were not able to be donated. I knew the families who were waiting, who'd gotten the call, arrived at their respective hospitals, waited for hours, only to be told, "I'm sorry. Today is not the day."

    The only good of that was that instead of saying goodbye to Destany as she was wheeled into surgery, her mommy was able to rock her to sleep one last time.

    Every day I pray Teresa and other little girls just like her get what they need, and my heart aches for them and for those of us who had to say goodbye. I know you think of this often - that Teresa's gain is another family's loss. I wish our loss had been your gain that day.

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  9. Continuing to pray for your family. Glad to see you're enjoying life in as much of a "normal" mode as is possible considering. Trusting the Lord to continue to bless and keep you all.

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  10. Leah, I'm so verk verk sorry for youtube loss!!! :-(

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  11. Oh I Hate autocorrect... Especially Wien it rally isn't the best situation for it to mess things up. Sorry for that Leah. Not youtube, just you.

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