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| Perfect picture showing her "fierceness!" Giving those ducks a talking to! |
I know I usually start each post with a relative scripture, but this quote really struck me for Gracie. She has completely embodied the epitome of fierceness in her short 2 1/2 years. Most of the time I'm extremely grateful for that strong spirit inside her...but if I'm being honest, I wish she'd save it for medical stuff and not everyday practice. Hahaha! It's great when she's fighting thru another surgery, or learning how to walk again with yet another contraption, cast or brace...but when I take something away from her, and she shouts, "No! Never! You're being mean!" I wish she was a little less fierce. :)
Gracie is doing great. We went back to Baltimore Monday to get her cast removed. She didn't like the saw but was a trooper as always. Dr. Standard says her foot looks great, we just need to keep the cast on (they made it removable) until we can get her AFO (her brace). They want to make sure the tendon is stabilized so anytime she gets moving too much she has to have the cast. She will wear the AFO for 3-6 months, until she grows out of it. Then her leg should be free and we start physical therapy again to work on range of motion. It will be clinical therapy this time, instead of at home, because she will have been mobilized in the same position for so long, she will need more intensive therapy.
I explained to Dr. Standard how Gracie has started turning her foot in when she walks/runs. Basically her knee and tibia are not lined up the way they should be. (Common with Fibular Hemimelia). This is something that is usually worked on during the lengthening surgeries. He would like to wait until then to address it as long as she doesn't start tripping herself or it doesn't get worse. We are supposed to send him a video email of her gait in 5-6 weeks and he will update us more then. Hopefully therapy can help until lengthening comes around.
We did get the great news that unless this issue, or anymore 8-plates are needed, we don't have another "planned" surgery for 2-3 years!!!! At that point it will probably be time for lengthening. I am so happy~although cautiously~about this. There really is no such thing as a "guaranteed break" from surgery with Fibular Hemimelia. Every growth spurt could effect the way she compensates, the way her bones grow in, and could lead to additional surgeries. BUT...I am planning on this break, and will take the rest as it comes. One thing for sure, I'm learning to be very flexible!
We did apply for Medical Medicaid again this month, and got denied...again. We tried for another plan they have here, called "Katie Beckett," but found out that Gracie's disability is not severe enough to qualify her for that plan either...so back to square one.
I am hoping to be intensifying the fundraising while we are on this "break." No surgeries does not mean no medical costs. The bills for Gracie's June surgery have started rolling in, and her brace/lift/therapy will be out of pocket until our deductible is met. We will still have bi-annual to annual trips to Baltimore for check ups until its time to lengthen. When that comes around it is a 10-12 month process, with multiple surgeries, "per lengthening." It requires we either spend 3 months in Baltimore, or prepare to travel back every 2 weeks for clinic, along with intensive land and water therapy wherever we are. After contacting local news stations here in Boise, I am going to try and plan a spaghetti dinner. I will also be doing a t-shirt/sweatshirt fundraiser, and there is always the Origami Owl Jewelry fundraiser available. If you have any ideas for fundraising, items you'd like to donate for a silent auction, or would like to pre-order a t-shirt, please let me know. A picture of the shirt is below, and I will have a price as soon as I have an idea of how many will be in the first order.
Thank you all for keeping us in your prayers. Please be praying with us for the following: 1-We are trying to sell one of our vehicles, and the lease on our 2nd is up. Please pray that we can quickly sell the 1st vehicle, and get a full asking price offer, and that the lease return/renewal goes well. We need to stay in the same 1 car payment, 2 cars position that we are in now. 2-I have applied for a PT position. I don't really want to go back to work, Gracie is a full time job I am enjoying...but Robert has been working so hard, teaching and coaching 3 sports to keep us afloat. If we really are going to have a break from surgeries/trips, now is the time for me to start helping out in that area. 3-We are still waiting to hear if our scholarship application for Gracie's last surgery is accepted. This would cover costs for the surgery/hospital stay. We would still be responsible for the surgeon's, anesthesiologist's, therapy, brace, shoe lift, and radiology bills....but this scholarship would be a HUGE answer to prayer for provision!!! Please pray for an acceptance!
Also, let us know how we can pray for YOU! We wouldn't have made it this far without God, our family/friends, and this community of support and prayer warriors. We will forever be grateful for the opportunity to partner with you in prayer for what's going on in your life.
Have a great week~and don't forget...a little fierceness can get you thru so much! :)
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| Front of shirt |
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| Back of shirt |
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| Gracie's new friend Ginny, she's seen her at the HP House a couple times now, and loves her! |
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| Her and Maggie Bear waiting to get cast off, a little unsure. |
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| After the casts were removed, much better now! |
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| Does NOT like the saw |
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| 3 more scars :( Love this little foot! |
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| A little treat for being such a good patient! |
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| Cast is back on, just removable |
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| Even though it was a quick trip, they missed each other so much!!! |
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| Gracie fed the ducks for the first time. They kinda swarmed her, but she had a blast! |
