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***Update 6/26/24***
It has been way too long for an update on here. Here is the latest from Heather and Gracie:
Things are moving along here.  Gracie’s therapy is going well, and it’s not as painful as she thought it would be.  It’s definitely more challenging in PT and at home in our room, and leaves her sore or maybe just stretched, but not in pain.  Everyone has been so helpful to work with us (Allison checked in with us to see if we had any questions and were ok the day after our appt, PT-Sara got us scheduled quickly so we were even able to get our first visit in last Friday instead of having to wait until Monday, Dr. S’s secretary Leslie got us last minute clinic visits this week and next, Miracle Flights quickly changed our return flight home, and Ronald McDonald got us in last minute).  These are huge blessings!  We also got a junior membership to a gym that’s very close to us so Gracie could swim, and she’s been LOVING it.  We went two times yesterday and once before PT today.  It’s getting TONS of use.  
PT added what they called a “kickstand” to Gracie’s fixator.  It is not something we are allowed to take off, so it stays on all the time, but basically it keeps Gracie’s leg straight more consistently during the day, and helps reposition the knee/tibia issue we are having.  She’s not a fan of it, because she’s constantly feeling a stretch, but all this stuff they are doing has been working.  When we got here, her knee measured at -16 (last Thursday).  Yesterday she was -6 and today, -5.  We’re hoping we can get her to 0 by Friday and then next week is all maintaining that.  We have started turns again to correct the over correction of the position of her leg, so we’re turning it back in a bit because it went out the wrong way too much, and hoping that helps with the knee, and to give us some more length when the leg is in the correct position…without lengthening any more.  
When Allison checked in with me, I got more details on Gracie’s knee, and wanted to share some of them with you.  This is why we’re doing another 2 weeks out here, why we’re pushing through and why it’s soooo important.  Thank you for your prayers and help and checking in with us.  There really is no way to describe the roller coaster of emotions and exhaustion but I don’t know how we would get through this without God or our community.  You guys keep us going so much more than you realize, and so much more than just financially.  
We’re missing home still like crazy and I’m daily laying everything at God’s feet.  But we’re trying to find joy each day. Trying to smile, make memories and get back up again each time we struggle.  
More detailed info on why this is so important for those that like this stuff:
As you are aware, lengthening of the bone makes the adjacent muscles and tendons very tight.  It creates a tremendous force across the joints and that can pull the joints out of stable configuration. Kids with Fibular Hemimelia do not have normal knee stabilizers (ACL/PCL).  Gracie has had the Super Knee procedure to recreate ligaments inside her knee to provide some stability, but it will never be as strong as a “normal” knee.  That is why PT is so critical to stretch the soft tissues around the lengthened bone.  
Her last x-rays show the tibia is being pulled forward by the imbalance of forces across her knee during lengthening.  Specifically,  her gastroc muscle is tight and pulling the distal femur backwards in relation to the tibia.  Because she doesn’t have strong ACL/PCL stabilizers within the knee this is causing an anterior subluxation of the knee.  Anterior subluxation means that the tibia is positioned forward in relation to the femur.  A posterior subluxation is more common in lengthening patients.  This is when the tibia is positioned backwards in relation to the femur and is due to tight hamstrings.  
So to get the knee back to a stable position, Anil and his team need to specifically isolate the gastoc muscle and stretch, stretch, stretch.  That in combination with no more turns should get it back into position.  If she is still tight, the rescue is to back up turns and sacrifice some length. It is always better to sacrifice length over joint stability.  We can always come back and lengthen another day (if desired), but if a joint goes bad, it is very hard to fully rescue it.  To be clear, her joint is not beyond rescue now, but we must act now to bring it back into the safe zone and preserve its function long term. 
***Update 4***
We have completed all of our planned fundraisers scheduled prior to surgery. All that is left is ‘getting it done’! We leave for Baltimore in less than 3 weeks. Surgery is scheduled for March 5. We will periodically update this page, but if you are interested in keeping up to date on all things ‘Gracie’, please go to See Gracie Run on Facebook or Instagram. There we will keep a more detailed account of what is going on and all prayer needs and praise reports! We would love to have you join us!
I tried to upload a video of Gracie making her first basket since returning to playing basketball, but wasn’t allowed. This is her hearts desire!!! Please go to her FB/Instagram page to watch and listen to the joy! Also, here is the latest Praise Report and Prayer Requests from her Mama:
Saturday Gracie scored her first basket since she’s been back to playing!!! The pure joy from that moment is seriously still lingering. It was such a needed boost. She has worked so hard just to be on that court. The things that kids normally take for granted (like playing) she had to work hard to be able to do. It’s been the sweetest thing watching her play. Watching this team of girls rally around her and their parents cheer Gracie on! Enjoy the video.
*That we would hear soon that the Ronald McDonald House is confirmed and approved. (Our back up place is booked thru the summer), and anything else I’ve found is well over $10,000 for the length of our stay (some up to $22,000)…working on hospital rates and possible AirBnB, or just plain short term rentals).
*That I would be able to find a cost effective vehicle rental (the lowest price I’ve been able to secure is $6,876.39).
*For our health. There are so many people getting sick right now and we are hitting the point where Gracie and I (and the family) really need to stay healthy. Illness can derail things so quickly. Please pray for a covering over us!
*Just for Gracie and I in general. It’s getting close, and it’s all starting to feel pretty heavy. We’re just going through our usual emotional process of prepping for surgery, but it’s a lot. Just hearing this Saturday might be her last game before we leave had Gracie in tears on the way to school today.
***Update 3***
Just a reminder that tomorrow is our Silent Auction and we have so much more than what is listed below. We hope you all can come and join us! La Ristra is now donating 15% of the days sales! Please come and support them as they are helping us so much! Heather and family will be there from 5-8. The Silent Auction ends at 7:30. You do not need to be present to win!!!
Next week on November 9 from 5-7:00pm is our Paint night back at La Ristra! Come and have fun with us as we are led by an amazing artist in painting a beautiful picture. $35 p/person. Food and drinks are available for purchase. 
venmo @Heather-Peterson-66 to RSVP
***Update 2***


November 4, 2023, 5:00pm – 8:00 pm

638 E. Warner Rd Gilbert, Arizona 85296

Please join us at La Ristra Mexican Restaurant while we raise funds to help 11-year-old, Gracie on the next (and hopefully final) phase of her journey with Fibular Hemimelia, an extremely rare birth defect.

Follow Gracie’s story @See Gracie Run Facebook, Instagram

Silent Auction Items Collected to Date:

  • 2 Vehicle Passes for Bearzona
  • Multiple handmade quilts
  • 2 OdySea Aquarium Passes
  • 1 Hour Shooting lesson with an NRA Certified Instructor – a certificate for 1 and a certificate for 2, tailored to your skill level. Firearm/ammo included @ Caswells Shooting Range
  • Self-Care Day: Massage, Nails, Haircut/Style
  • 4 Reg season Diamondback tickets to the game of your choice
  • DC’s Steakhouse Gift Certificate
  • Coopers Hawk Magnum Bottle of Meritage Wine w/Complimentary 3 months Wine Membership & Tasting for Two
  • 2 First Class seats on Verde Canyon Railroad
  • In & Out Burger meal cards
  • $25 Certificate toward Gourmet Gift/Fruit Basket
  • Arizona Cardinal Signed Football
  • Big O Tires Gift Certificate
  • Multiple exotic vacations

We will have T-shirts/Sweatshirts available for purchase


La Ristra has generously agreed to donate 15% of all sales for those who mention they are in Gracie’s group on this day. Please join us in thanking them by supporting their amazing restaurant. Gracie and her family will be there from 5pm-8pm. The silent auction will be closed at 7:30pm

***Update 1***
We are working in the background to prepare to kick this fundraiser off! We have many ideas and will update you as those are finalized. We do have our Silent Auction date and location finalized.
Please join us at La Ristra Mexican Food Restaurant in Gilbert on November 4, 2023. The items for Silent Auction will be available to consider and make your bets until 7:30 that evening. Gracie and her family will be there from 5pm-8pm. Please come join us and mention you are with Gracie’s group. La Ristra is generously donating 15% of sales for all those with her group! I will update with the flyer as soon as it is finalized, but wanted to get this out so you can save the date!
Important update on Gracie (warning-graphic pictures attached):
Surgery #18 is scheduled!!!
Last October, Gracie, my mom and I went out to MD to get her 8 plate removed and try to correct the position of her knee/leg.  The surgery did not go as planned.  This was not the first time we’ve had complications, but it was the first time that her surgeon came out to update us and you could see his disappointment.  He has been frustrated before, but I don’t know that I’ve ever seen the weight of disappointment during any of our surgeries.  This man cares so much and he had to come out and tell us that while he could do as much as possible, the surgery she would need to correct her knee from growing out is a major one.  He offered to do it right then and there, but this surgery requires more than a week or two in MD, and the rehab is significant.  I needed time to prepare and plan, and Gracie definitely did too.  During the recovery we felt like he managed to get her leg pretty straight, but it quickly went back to its prior position and that was probably the most disappointed Gracie and I had ever been.  We were hoping for a quick recovery and her to be cleared to play and do sports/activities.  That did not happen.  She has some slight improvement in what she’s cleared for, but we are now coming up on 3 years of PT 2-3 days a week (with summer breaks) and no clearance.  Gracie has gained tons of weight, she’s frustrated she can’t really do the things she wants to and this has taken more of a toll then I think any other surgery has.  This has impacted her health, her emotions, our schedule and our finances for so long, and was a newer issue (not something she’s had all along) and that has just been really hard to deal with for both of us.

In March, Gracie will have her 2nd lengthening surgery, (her leg is short again), and during that time they will correct the position and structure of her leg.  Lengthening by itself is a major surgery with a lot of work, and adding the correction in compounds it.  I’m guessing this will be another one of her 7hr surgeries. I am praying this is a permanent and successful fix.  In order to do this, Gracie will need to be in an external fixator.  She had one of these as an infant, but we had a rough go with it.  She ended up with almost 2 months of solid infection which resulted in a quick flight back out to have a pin replaced and her open sites surgically cleaned. The recovery of our last lengthening was so easy because it was internally done.  There weren’t open wounds, scar tissue, etc….This time that is not an option.  So….in late February Gracie and I will travel to Baltimore, surgery is scheduled for March 5th.  She will probably be in patient for around a week give or take a day or two.

We will need to be in Baltimore for 3 months, and will be back at PT daily (possibly 2x a day if they have us do land and water…not sure on that part yet).  Gracie will miss the 4th quarter of 6th grade, and I will be working remotely.  The lengthening is automatically two if not three surgeries, barring no complications…so we know that the remainder of this year and into next we will be handling surgeries.  I am praying we can stay at the Ronald McDonald House again, but that won’t be settled for a bit. To say Gracie is unhappy about this surgery is an understatement.  She can’t wait to get her leg fixed, but she is terrified of the ex fix.  She’s worried about what her friends will say, she feels like she’s lost the group of people who kinda grew up with her having surgeries since we’ve moved schools this year. She is so worried it’s going to hurt, because even looking at it is hard. I’m back to worrying about being away from my son for 3 months, her doing school remotely without swivel this time around, the financial aspect, work, all the things.

My mom is going to start fundraising for us again, and we hope to have a silent auction, a couple wine and paint nights, t-shirt/sweatshirt sales, etc…AND my mom found a place similar to GoFundMe, but every donation qualifies for a tax write off….now the donations will be tax deductible and that’s huge!!!!  THAT IS THIS SITE!  The amount we are trying to fundraise for might shock you, but that’s actually lower than what we will probably need.  I essentially need to relocate states for 3 months and the costs were staggering 3 years ago, I’m afraid to even think about what they are now.  Three years ago we raised just under $27K.  Over 1/3 of that went to the rental vehicle, 1/3 went to PT because we still had a co-pay with insurance, and used our insurance benefits within the first month and then were out of pocket, 1/3 went to gas/food/medication refills/three more trips/surgeries back out to MD.  To be fully transparent, just her physical therapy when we go 3x a week is $1200 a month, in AZ.  We’ve been doing this for almost 3 years and just moved down to 2x a week-and this has been far outside the original amount raised.  Once she has surgery we will be back to 5x a week for an unknown amount of time.  We will have at least 1-2 more surgeries following that, and an unknown amount of trips back for follow ups.  I’ve got just under $2,000 of our own money saved in her account, and while that’s laughable in some ways, it’s really taken a lot of work and blessings from God to get that.

I hate fundraising, and I’m so glad I have my mom to help with that….I wish we didn’t need to do it, but I’m so grateful for the people who have blessed this journey by prayer, by sending cleaners, by sending food, by shutting my office door and letting me fall apart when I hit my limit, by donating, and by just being there.  We are so grateful for my mom coming out and helping me while we’re in the hospital and while we move bags and bags back home to AZ, for the help we get from work and school and everyone.  We are immensely blessed and we know it!  It’s just hard…and right now, knowing what we are facing is hard.  It’s scary and overwhelming for both Gracie and I.

I am listing some prayer requests that we would be super grateful for you to come alongside us with, and I’m going to add some pictures of Gracie in her fixator when she was little. This will be what she has on this time around, and pictures of her leg last year before our Oct surgery, right after surgery and now.

Please be covering us in prayer over:

*For the Ronald McDonald House to work out the entire time we’re there
*That this surgery is successful and a permanent fix
*That Landry would be ok while I’m gone, it is SOOO hard to leave one of my kids for 3 months (on him and me)
*That my mom is able to come out for surgery and then watch Landry while we’re gone
*For someone to watch our two dogs
*That Gracie would be ok emotionally and push through this even though she’s scared
*For both physical and emotional strength and stamina for me, the ex fix is a lot of work, and they say it’s not IF you’ll get an infection, but WHEN and I have my own anxiety on this from when she was little
*That fundraising would be successful
*That physically I would be able to handle what will be needed
*However else you feel led to pray

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