It has been far too long since I have updated everyone on Gracie. I keep meaning to, and then things come up and I get busy. Then something happens I want to make sure and post, and I get busy again. Tonight I am finally making the time.
These last few months have been a whirlwind. Gracie had surgery in June, cast removal in July, and brace fitting in September. She picked out the cutest pattern and colors for her brace, and loves it. She will wear it until she grows out of it, so she'll have it for a while. She has healed nicely from the 8-plate being removed, and the tendon transfer has done a great job at keeping her foot flat, instead of turning outward. We have noticed a LOT of her foot turning in now, which is discouraging...but she is still unstoppable. With her foot turning in, she drags it a lot when she gets moving, and trips herself multiple times a day. It's hard to watch, but honestly, most of the time she gets right back up and keeps going. Every once in a while its a hard fall, and we've had some scrapes and bruises. We head back to Baltimore for her surgical follow-up the week of Thanksgiving. This is something we hope to address with Dr. Standard at that time. As of right now, the game plan is to have some free time for the next year or two, and then fix this issue at the same time of her first lengthening. As long as the way she is walking isn't going to do any long term damage, then I'm fine waiting. Its super hard to watch her fall ALL the time...but I'm fine waiting. I like the idea of surgery free years!
These last couple months have brought huge changes and major answers to prayers and blessing for our family. We had asked everyone to be praying that our older minivan would sell, that if it was God's will, I would get a PT job, and that we would be able to get a newer minivan when we traded our CRV in at lease end. IT ALL HAPPENED!!!!! Plus we qualified for some financial aid for her last surgery at the hospital! I am now working at Landry's school, in the before and after school care program. I even get to bring Gracie with me, so she doesn't have to go to daycare. It is such a huge answer for us. Financially it does not make everything better, BUT...my amazing husband has been carrying the financial burden for our family alone for the last 2 years, and this gives him a breath and allows some of that weight to come off him...which really, is HUGE for us. I am so grateful for these last couple months. Its felt amazing to be in a time of blessing instead of a time of trial!
With this new job has brought some challenges for Gracie and I. Her foot is much more "public." A group of kids notice it a lot more, ask questions about her brace, and sometimes stare. It has been hard. Its good in a sense because she's going to have these issues forever, and now I'm getting a chance to teach her to handle them with confidence, and not embarrassment. God has been so gentle with me, giving me words to say, allowing me to take a moment, and think before responding...and reminding me that Gracie will react the way I do, so I need to respond how I want her to. Most of the kids really watch out for her, and have taken a protective role. A couple have laughed and made a big deal out of her foot. These kids are young, and the older kids there just tell them its no big deal. I am honest with what is going on with her, at the level of age I'm talking to. Usually their questions are innocent and just out of curiosity. The one time there was any malice to it, I kinda think the kid just didn't know how to respond. Either way, there have been talks about peoples' differences, and how to respect them. It has taught me, and it has taught these kids. The most heart wrenching instance was when Gracie's brace got caught in a chair as she was trying to stand up. She fell over and put her head down in her lap. Usually she just gets right back up and moves on. This time she was embarrassed. Red faced and all. The kids around her were incredible!!!! Before I could even get to her, they were telling her that it was ok, and trying to help her up. I got there and she practically jumped into my arms and buried her face in my neck. I wanted to shield her and cry with her. It was breaking my heart to see her embarrassed. But...I sat her down, and told her "everyone falls. It happens to everyone. Even mommy falls. It's ok to fall." And these incredible kids started saying, "yea, I fall too!" She got down and went back to playing like it was nothing. They made her feel normal, and I appreciated that so much.
I think there has been a huge learning curve in Gracie, the kids she encounters at school, and myself. I am more aware then ever of peoples' differences, and more determined then ever to protect them from being hurt or ashamed of them. I think this verse just paints a beautiful picture for everyone. Its hard sometimes to remember that God created you perfectly. That He loves you no matter what you find embarrassing or others find "different." But He did. He made us in HIS image, and He is beautiful and without flaw. Lets remember this when we see the differences in others.
Prayer Requests:
-We are currently fundraising for Gracie's next trip to Baltimore, (the week of Thanksgiving). Please be praying for the provision for that trip. We currently have a fundraiser thru Origami Owl going on. Please check out See Gracie Run Origami Owl Party on facebook, or go to www.seegracierun.origamiowl.com for more information. As always the PayPal tab is at the top right corner of the blog as well. If you are unable to donate, or don't feel led to, we would still LOVE your prayers, good thoughts and well wishes! Those mean so much to us.
-Gracie's leg turning in is very hard to deal with emotionally for me. I am struggling watching her fall and bust her lip or scrape her knee because of something wrong with her bones, not because of typical toddler activity. Prayers that we can find a non-surgical way to alleviate some of the turning when we go to Baltimore, and that our only answer is not just "that's the way its going to be." I struggle with fear of putting her through all of this and not having a very good functioning leg. I know it won't be a perfect match to her left leg, or what is typical for kids who do not have FH. I think I have to fight that assumption in my mind constantly. It's easy to think with all these surgeries that we are giving her perfection. It's easy to expect that. But that is not our reality. We are trying to give her the highest quality of living, and keep her leg. That's the goal. To have two even, working legs as an adult. With the least amount of residual work and pain possible. Please be praying for me as I work thru my expectations.
-A month ago, a lady in line at the Starbucks near us paid for our drinks. She told the barrista that they had been blessed in provision for their son Elliot's upcoming surgery, and wanted to bless us. She did ask the barrista to pray for her, as the surgery was out of state and they were leaving that day. I'm not 100% sure on Elliot's condition, but I believe it is some type of leukemia or cancer. I haven't heard an update on him, and probably won't as we think he will be having treatment for a few months before he returns home. I was deeply touched by this, because I know personally how hard it can be to be a blessing for others in the midst of trials of your own. Please be praying for this boy Elliot, and for his family. Please be praying for complete healing and for God's strength thru this time. I will update more as I hear it, but he has been heavy on our hearts, and I have such an amazing group of prayer warriors here....I want you all praying too!
I have more to update on, but will try and do another post in a week or two, and add it in there. I hope you enjoy these pictures! Landry just had his 6th birthday, (his party was lego themed), and Gracie will be turning 3 on the 29th. They are growing so fast!!!! I will try and be more diligent in updating sooner! As always, please let me know if I can be praying for you!
God Bless!
Wednesday, October 15, 2014
Sunday, July 27, 2014
"And though she be but little, she is fierce." ~Shakespeare
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 |
Back of shirt |
Gracie's new friend Ginny, she's seen her at the HP House a couple times now, and loves her! |
Her and Maggie Bear waiting to get cast off, a little unsure. |
After the casts were removed, much better now! |
Does NOT like the saw |
3 more scars :( Love this little foot! |
A little treat for being such a good patient! |
Cast is back on, just removable |
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! |
Monday, July 14, 2014
"I will answer them before they even call to me. While they are still talking about their needs, I will go ahead and answer their prayers!" (Isaiah 65:24)
I love this verse. In a positive way, I believe it completely sums up our journey of provision as we walk thru Fibular Hemimelia. If I had it my way, I'd have a pile of provisions sitting in our bank account...but God has been gracious to provide every step of the way. We are very blessed, and I am extremely grateful for the fact that He knows our needs, that He goes ahead and makes a way for us.
I wanted to do a quick update because its time to go back to Baltimore again. This 6 weeks of cast care has really gone by quickly. Gracie has done amazing, with little pain, but I think more discomfort then anything. She says her cast hurts a lot, but its not slowing her down too often, so I think a good chunk of the time, its just heavy and uncomfortable. I hope so anyway...its really hard to judge the milder side of pain on a 2 year old. I wish she could give me an answer on the 1-10 scale. LOL! Monday, July 22nd, Gracie gets her cast removed. I believe she will still need to wear it, but just for a limited amount (like during the day, but not at bed time, or just during bed time, etc). After that she will go into an AFO (ankle foot orthotic) brace for 3-6 months (until she outgrows it)...and then should have a free leg again! We will get some x-rays Monday to see how the tendon transfer is healing and make sure everything is as it should be. Since we've had a few "unexpected" issues arise, I am cautiously optimistic that we will not have any more surgeries this year!
We had a blast visiting Lala, Papa, and Uncle Steve in Coeur d'Alene. Gracie got to use her swim cover almost every day and really enjoyed getting in the pool and hot tub. I have 2 little fish that's for sure!! While we were there we had some family pictures taken. They haven't all come back yet, but I posted a couple, along with some cute recent ones. I definitely want to do family pics with the Patton/Clark side next time we're in AZ...these were fun!
We do have some specific prayer requests...1-Please be praying that the tendon transfer took, that she is healed and we get a great report from Dr. Standard on Monday. 2-Gracie has now started turning her leg/foot IN. I'm not sure if its from the tendon transfer, a new issue, or just how she's compensating with the cast...but prayers that no other work is needed for a while would be great. Gracie, and our family need a break from surgeries and recovery. 3-Our lease on our CRV is coming due and my mini-van has over 188k miles on it. So...we are in the market for 2 vehicles, but can only afford 1 payment. Please be praying for God's guidance, wisdom, provision and favor over us as we look into replacing these vehicles/buying out the lease, etc..4-We are financially tight, if surgeries are done for a while, it may be time for me to go back to work outside of the home. It's not what we want, but may be what is needed. Please be praying for God's direction, wisdom, guidance and provision on that issue as well. 5-Prayers that Gracie finally gets accepted on Medicaid. Her AFO's are approximately $1200, and they would be completely covered under Medicaid if she was accepted...it would be a HUGE help!
I know its a lot of prayer requests....but we can not thank you enough for your prayers! They are needed and appreciated! Plus, God definitely hears them...the last fundraiser was enough for the last trip, and we are believing in God for provision for this weekends quick trip as well!!!
Thank you and God Bless!
I wanted to do a quick update because its time to go back to Baltimore again. This 6 weeks of cast care has really gone by quickly. Gracie has done amazing, with little pain, but I think more discomfort then anything. She says her cast hurts a lot, but its not slowing her down too often, so I think a good chunk of the time, its just heavy and uncomfortable. I hope so anyway...its really hard to judge the milder side of pain on a 2 year old. I wish she could give me an answer on the 1-10 scale. LOL! Monday, July 22nd, Gracie gets her cast removed. I believe she will still need to wear it, but just for a limited amount (like during the day, but not at bed time, or just during bed time, etc). After that she will go into an AFO (ankle foot orthotic) brace for 3-6 months (until she outgrows it)...and then should have a free leg again! We will get some x-rays Monday to see how the tendon transfer is healing and make sure everything is as it should be. Since we've had a few "unexpected" issues arise, I am cautiously optimistic that we will not have any more surgeries this year!
We had a blast visiting Lala, Papa, and Uncle Steve in Coeur d'Alene. Gracie got to use her swim cover almost every day and really enjoyed getting in the pool and hot tub. I have 2 little fish that's for sure!! While we were there we had some family pictures taken. They haven't all come back yet, but I posted a couple, along with some cute recent ones. I definitely want to do family pics with the Patton/Clark side next time we're in AZ...these were fun!
We do have some specific prayer requests...1-Please be praying that the tendon transfer took, that she is healed and we get a great report from Dr. Standard on Monday. 2-Gracie has now started turning her leg/foot IN. I'm not sure if its from the tendon transfer, a new issue, or just how she's compensating with the cast...but prayers that no other work is needed for a while would be great. Gracie, and our family need a break from surgeries and recovery. 3-Our lease on our CRV is coming due and my mini-van has over 188k miles on it. So...we are in the market for 2 vehicles, but can only afford 1 payment. Please be praying for God's guidance, wisdom, provision and favor over us as we look into replacing these vehicles/buying out the lease, etc..4-We are financially tight, if surgeries are done for a while, it may be time for me to go back to work outside of the home. It's not what we want, but may be what is needed. Please be praying for God's direction, wisdom, guidance and provision on that issue as well. 5-Prayers that Gracie finally gets accepted on Medicaid. Her AFO's are approximately $1200, and they would be completely covered under Medicaid if she was accepted...it would be a HUGE help!
I know its a lot of prayer requests....but we can not thank you enough for your prayers! They are needed and appreciated! Plus, God definitely hears them...the last fundraiser was enough for the last trip, and we are believing in God for provision for this weekends quick trip as well!!!
Thank you and God Bless!
One little fishy |
Two little fishy |
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My family! |
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She takes my breath away! |
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No teeth handsome boy! |
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4th of July |
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Just a cute shot from today, hanging out |
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The Peterson side of the family! |
Saturday, June 28, 2014
"The Lord gives his people strength. The Lord blesses them with peace." (Psalms 29:11).
Gracie's surgery was June 4th. It went very well. She did not need the 8-plate put in her tibia, so she just had the plate removed from her femur and the tendon transfer. Dr. Standard said her leg looked nice and straight. This was all good news! We did have some hiccups....her block didn't get in that "sweet spot," so she came out of anesthesia in a lot of pain. We've never had that happen before, and it was hard to watch her hurting so quickly. The recovery nurse gave her something, but by the time we got upstairs to her room she needed more pain meds.
I was so glad my mom was with me, because Gracie didn't want me anywhere but touching her. In fact, I had to actually be IN the bed with her. I say had, but there's no where else I would have rather been. Except maybe a bathroom break every once in a while. Mom was amazing handing me stuff, organizing, distracting and just loving on us. Gracie did really well once we got her on a schedule with her pain meds, and we got decent sleep that night. The next morning was very rough. Probably the hardest time pain wise since her first, major surgery. Gracie was inconsolable and couldn't sit still. The dose of oxy didn't touch her pain, and there was nothing I could do to calm her, so I had mom call the nurse. I was going to ask for more meds in her IV. When a new nurse came in and checked her IV, she found that it had slipped out and was filling her hand with fluids. This was what was causing the pain. It was sooooo hard to watch her hurting so badly. Thankfully the pain went away quickly after taking her IV out.
Recovery was a little harder then we anticipated, but typical for the tendon transfer surgery. Gracie didn't walk for about a week. It was hard to see, but when we got home and she saw her brother running around she started standing, taking steps, and then off she went!!!! We are now a little over 3 weeks post surgery. She gets sore and achy, but is not in pain and moving around great! We go back to Baltimore July 20 to get Gracie's cast removal done, and follow-up on the progress of the tendon placement. We should hear more about what's next then, but it sounds like they will make the cast removable for a while, then an AFO, then free foot!!! I'm guessing it will be about 8-10 months at minimum before her foot is totally free of any devices again, but it should be structurally much much better. As long as we don't need any plates put back in, and her growth stays steady....we may have some surgery free time coming. I'm excited, but trying not to get my hopes up because the last 2 surgeries and 3 procedures were "unplanned." Either way-we will have 2 more trips to Baltimore this year and at least one yearly after until her lengthening. So we still have to stay on top of our fundraising.
During Gracie's surgery, we talked to a member of Dr. Standards team about the process they use, allowing parents to take their child into the OR, and be the last face they see before going under. I actually get to ride in the bed with her, place her on the OR table, and hold the mask over her face. I get to sing to her, rub on her face and tell her how much I love her as she's going under. It's beyond difficult, and an enormous blessing all at the same time. We talked about how some parents just can't handle doing that. It's really hard, but I couldn't imagine not taking her back. That being said, I've realized how much strength it actually takes to admit that's something you can't do and trust someone else to do it for you. No judgement either way, both are heartbreaking for parents. This journey is not easy-no matter what you have the strength for or not. It's so hard on a parents heart to watch your baby hurt or struggle. I've heard a lot this time around about how strong I must be to handle all of this. While it feels good to hear people think I'm handling this well, I do need to say without God, I wouldn't be doing anywhere near as well as I am. When we don't think we can be strong-God gives us strength. I believe part of being strong is letting go and being emotional. I usually fall apart weeks BEFORE surgery. The pre-surgery anxiety and stress overwhelms me. But at surgery time, I'm cool, calm and collected. Gracie needs that from me. She needs me to be there for her and put my feelings aside. Being able to do that is strength. Waiting until your baby is in the OR, and THEN breaking down crying is strength. Not crying doesn't make you strong-being able to set your feelings aside to care for your child does. I was grateful to have my mom with me, where I could have my moments of release when Gracie was asleep or playing....but be calm enough when she was awake to hold her when she was hurting. I couldn't do this without God blessing me with His strength and filling me with His peace. (Having an amazing support system in my husband and our families is a huge help too)! So just in case anyone wonders how I do this, how I survive this and handle it all....it's a lot of strength and peace from God, the smile on my baby girls face, the way she reaches for me when she needs comfort, the arms of my husband holding me, the listening ears of my mom as I break on the phone or in front of her, my parents, and my in-laws, who drop everything to take care of Landry so he's not forgotten in this process, and friends, strangers and loved ones who pray for us constantly. Without these things-I'd be a wreck. That is where MY strength comes from.
Lastly, I'd like to send a very special thank you to our Vineyard Community Church family in AZ!!!! Your fundraising efforts for Gracie's fund gave us EXACTLY what we needed to get to and from Baltimore for this surgery, and get her a waterproof cover for her cast so she can still swim this summer!!!!! Our hearts are so grateful and we appreciate you all so much!!!! We pray God blesses you for bring such a blessing to us.
Prayer Requests: that Gracie's soreness would be minimal and therapy and recovery would go smoothly, that God would provide finances for our remaining trips and orthotic braces, that we would finally be able to get medical Medicaid for Gracie (I'm applying a 3rd time), and that we can find small ways to pay it forward even now. As always, if you have any prayer requests, we would love to hold you up in prayer as well. Thank you so much for all you do for us!!!
God Bless,
The Peterson's
Super Gracie! |
Hot tub time at LaLa and Papa's with her waterproof cast cover |
How your ride in comfort with a cast on |
Fun time out walking on cast |
8-plate removal |
Happy to be home and see her daddy! |
Now this is how you fly!!!! Southwest flight attendants saved an extra seat for her when they saw the cast! |
Sometimes, all you need is a cuddle with grandma |
super comfy |
first day smiling after surgery-took a couple days to get a smile! |
ice cream for breakfast....of course! |
sponge bath and hair braided by momma |
she is so beautiful |
in pre-op....waiting for surgery like a pro |
finally pain is managed |
working out with grandma before surgery |
On the plane, headed to Baltimore....loves flying! |
Special toe painting party pre-surgery |
Finally resting |
2 days post surgery, with grandma, sore/medicated but still smiling...love her so much. |
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