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Monday, February 25, 2013

Throwback Thursdays: Updated Motivational Mondays: Better Than the Oscars Breaking News: Katy's Coming Home

Katy on Feb 25th 2013
Katy today!

Thought for the Day: On February 18th & 25th 2013, I reported on a 5 year old's journey to receive a heart transplant. (in case you missed the earlier posts, a link to the 1st post & the entire 2nd post are included below) Since then there have been ups & downs as Katy, the young rockstar adjusts to her new life with a healthy heart. She & her parents have spent several stays in the hospital adjusting medications & taken short trips. In a recent blog post Amiee, Katy's mother, wrote about a trip to Storyland in NH. In the past when they went somewhere, they felt they had to do everything they could, in case there might not be a next time. This year, they were able to say, we'll do it next year, knowing it will be possible. When I got the picture above, I thought you would likean update on Katy's progress. Rockstar Katy is back in her ballet costume taking classes at Catch the Funk Dance Studio. Here's what the dance studio wrote on their facebook page:  
SUMMER DANCE HAS NEVER LOOKED SO GOOD!

INSPIRATION, DREAMS and LOTS OF LOVE have come together to bring you... KATY MURPHY RETURNS!

Yes, it's the return of the super-duper dancer-love-of-our-lives - KATY MURPHY!

As many of you may remember, Katy had been a dancer at Catch The FUNk in our 2012 recital/season - and she has always been AWESOME! Her heart was not so optimal...and she waited for a new one SO patiently (her parents/family too!).

SHE GOT THAT HEART and it's pumped her right back into the FUNk!!!! YAY for her, YAY for us and I wanted to deliver this happy ending to everyone at our studio!

Thought for the Day: Last week many people viewed the post about the March for Change & 5 year old Katy's heart transplant. Since so many people were interested, I decided to post an update on Katy's recovery. I had planned to post her parent's update from  February 21, 2013 (below), but while watching the Academy Awards, I heard even more exciting news than the Oscar winners achieving their dreams, so I changed the post a bit. Katy will be discharged tomorrow & the family's new normal will begin. I added yesterday's post from Aimee (Katy's mother) at the end of the earlier post. I know Katy is loving all the amazing photos cards she has received so I decided to change the intro to this post & add the good news that Katy will be coming home tomorrow.

It is inspiring to hear how Katy & her family are rising to the challenges they have been facing throughout Katy's life. We all can learn about the psychology of resilience from people who face adversity, find ways to cope & then support others by sharing their experiences.  It also can help other families struggling with the delicate balance of raising an emotionally healthy child despite the serious medical concerns they must face daily. If you have an inspiring story, I would love to hear it. If hearing about Katy & her family helps you with your challenges, it may help someone else with their issues. So feel free to comment & share this with people you know. Over the next year I will post updates from time to time here on my blog. Here is what Katy's parents posted on their website about what the future holds for Katy:

2/21/2013

It has been 1 week since Katy received a new heart. 5 plus years of waiting, endless moments of worry, tears, joys, sharing & friendships – 5 years of wondering what type of life we would have had “if things were different” & at times, what type of parents we would have been. There were times when out of necessity Katy’s illness defined the direction our family took, but if you’ve followed our journey, it never defined our lives. Now, that door is closed. Katy has her heart and the question of “when” has been answered.

And if the expression holds truth, now that one door has closed, which door will open?

Because so many have been on this journey for do long, there is some natural curiosity as to what happens next. And because of the outpouring of support, it seems impossible to allow any of Katy’s Rockstars (that’s all of you (those following the website)) to simply walk away from this page & from this story without knowing “What comes next?”

Katy
Below is the first of series of Q & A’s with Mike & Amiee. As the weeks & months pass, we’ll continue to share Katy’s story, & pictures of her thriving with her new heart.

Thank you all for the love, the prayers, & for sharing your joy with us over her miracle.

Q. When can Katy go home?
A. (See update below) Katy will leave the hospital sometime before Feb 26. The day Katy is discharged depends on when her first cath/biopsy is it could be as early as Monday the 25th or as late as Wed the 27th Katy will be discharged the following day.

Q. That seems soon! Does she just go home & get stronger?
A. It feels soon, but it’s under the care & management of her team & she must adhere to rigid protocol. When Katy returns home, she will return to a completely clean & virtually sterile environment. For the first 12 weeks after discharge, Katy will wear a mask every time she leaves the home or someone comes into the home outside of immediate family. She will be expected to make 2 visits weekly to the hospital & is expected to have upwards of 30 separate procedures including multiple echo cardiograms heart biopsies & catheterizations. Constantly watching for rejection. Drug therapy will be Katy will be coming home on 18 different meds & will be given 21 doses of meds per day. Katy's rejection meds will need to be monitored & levels checked twice weekly to ensure she is being given enough immunosuppressant to keep her body from rejecting her new heart.

Photo from Katy's friends from Dance School
Q. Are there risks with going home?
A. No. We will be able to control the germs in our home environment. Good hand washing is a MUST. We will be in our "bubble" until spring.

Q. Now that Katy has a heart, if she totally fine? Will she be able to do everything someone with a “regular” heart could do?
A. Katy is not totally fine... the first year will be long & we will constantly be watching for rejection. We as well as her team of doctors expect Katy to go on to live a full life. She is excited to head back to school and dance & even start soccer this year.

Q. Does the donor family know who received her heart? Can you thank them?
A. The donor family does not know who we are... I believe at six months although it may be 1 year we can write to the donor family to thank them & let them know about Katy & how thankful we are for their choice to donate during their grief. UNOS will then pass the letter on to the donor family & they may or may not choose to respond. We are absolutely open to meeting them & expressing our gratitude although I am not sure words will ever be able to describe how thankful we are & how we are grieving for them & their precious little one.

Katy's brother, Patrick
Q. How is your son?
A. Patrick is doing great. He is such an easy going wonderful little man. He is being spoiled rotten by his Auntie & grandparents & has handled this separation better than any of us could have hoped. We miss him like crazy... but think that this is better than the back & fourth we had originally planned.

Q. What are you most looking forward to?
A. I am most looking forward to finding our new normal. Mike & I whether we knew or not have been living in constant fear of losing our little girl for the last three years. That kind of fear takes it toll. We are looking forward to watching Katy grow & thrive & go to Kindergarten. We are looking forward to transitioning back to work, being a "normal" family. Sleep... sleep will be good!

*********
2/24/2013 from facebook:
Katy is doing great and I still can't believe we are looking at discharge on Tuesday. I know many of you want to know what we need and what you can do to help. I have updated the Be A Rock 4 Katy Amazon Wish List (its pretty boring... but all things we will need as we will now be full on germaphobes) Please do not ever feel obligated to purchase something your thoughts and prayers mean so much to us. Just thought I would share since it is impossible to answer each and every kind email and message. Thank you to all who have made a cash donation. It will be very helpful in getting us through the next few months. We love you and could not have done this without you. Much Love, The Murphys
 

In addition to the Amazon.com wishlist site, you can help the Murphy family using either of the ways below: http://www.giveforward.com/katyrockstarmurphy

& direct gifting to:
Be a Rock For Katy
The Savings Bank of Wakefield
357 Main Street
Wakefield, MA 01880

Join me on Wednesday for my What If? Wednesdays series where dreams can become possible.

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