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! :)
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!!!
Gracie fed the ducks for the first time. They kinda swarmed her, but she had a blast!
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!!!
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.
I haven't been very good about updating the blog. I find myself trying to avoid it actually. This blog is like therapy for me in some sense, and since I'm always honest here, I think just having to face what bothers me sometimes is hard. But, with us living in Idaho and most of my family and friends being in Arizona, I think it's even more important for me to keep this blog current. Gracie's treatment plan is constantly evolving, and she's growing so much....I don't want to take away from that by only posting every few months....so....hopefully I can be a little more consistent with it.
So far this year has really been very busy for our family. In February we purchased and moved into a home here in Nampa, Idaho. Yay!!!!!!! We were so excited to be back in our own place, have more room and really unpack. (Well, to be honest I still have some unpacking to do...but not much). We went back to AZ in March for spring break and my moms birthday. That was Robert's first trip back and it made us all very homesick, but we had such a good time visiting family, friends, and our church. Shockingly enough my birthday came around again in April. I still can't believe I'm just a few years from 40. People ask me how old I am and I have to ask Robert because when I say 36 it just doesn't seem right. :). Landry is doing great at school and we are so so blessed that he is in a local Christian school here. He is developing such a deeper understanding and relationship with Jesus it just fills my heart. He has become quite the little prayer warrior too. He has been laying hands on people and praying for them. I know we are just the lucky ones God gave him to, but I love him so much and am so proud of him.
Gracie is doing pretty good. She is growing like crazy and has such the personality. Sometimes I look at her and think she is just as feisty as my grandma was, and then I think I was such a snot with my attitude when I was little that I'm really in for it! :) Twice a month she has physical therapy and it has really been huge for her. Her confidence has just soared in what she feels she can do, and her abilities are increasing. She still really struggles with balance, but it is amazing to see her progress in areas that are challenging for her. She is jumping, getting better at going up and down steps, running and trying to climb everything. We have a long way to go, but I have no doubts she will get there. We are visiting Shriners of Spokane in May to see if we can get her covered with assistive devices under them. This would help us get her much needed braces, lifts and inserts. Her foot is turning in, and almost dragging because of the missing tendon, so this brace, and this years surgeries are important.
Gracie was supposed to have her 8 plate removed from her femur, and a tendon transfer done this week. Unfortunately we had to postpone the surgery due to lack of funds. We also received the unexpected news that there may need to be another plate placed in her tibia, (based on latest X-rays), but the final decision on that will be made in the OR when she has her surgery. This news means that instead of 1 surgery and 3 visits to Baltimore this year we may end up having 2-3 surgeries and 4-5 trips to see her surgeon. It's been hard for me. The unexpected surgeries always hit me hard. I'm starting to recognize a "pre-surgery" cycle, but I've been struggling lately. We just really thought this year was going to be one surgery and then a couple years off, and I'm realizing that every time we work to fix one part of her leg or foot, it highlights problems or deficiencies in other parts. It's just such a complex condition and I really don't think there is ever a break. There is time between surgeries, but there will, for most of her life, be a need that will be met via surgery. Even the older kids and adults in our FH world have "maintenance" surgeries. It's had me wrestling with the idea that maybe we should have chosen to amputate her leg. I still firmly believe we made the right choice, but it is so hard to go thru this every few months, to put HER thru this every few months and not question yourself sometimes. It is so hard on everyone. We are financially maxed out. We don't qualify for any aid in any form, and the hospital changed their financial aid acceptance and we no longer qualify for that. I'm trying to be the "squeaky wheel" and keep pushing but when we are in surgery mode, it's a constant battle and it is so overwhelming and exhausting. There's no doubt Gracie is worth it, but as her parents, the toll this takes on Robert and I, is hard. I am so blessed to have the husband I have....I couldn't imagine going thru this without him.
I've heard that it should eventually get easier to hand Gracie over, to keep doing surgeries. I think that's not really an accurate way to describe it. The process, the preparations, and the mental understanding of what is happening may get easier. I think post-surgery might even get easier, because in all honesty, the craziness of taking care of Gracie in the hospital, during recovery, handling her meds, her therapy, and wound care...that's almost a welcome distraction. I'm too busy to worry or feel anything but what needs to be done. It's almost a break for my mind. But the pre-surgery experience still causes high anxiety for me. Handing her over to a surgeon I have complete trust in, over and over and over, and realizing it's not gonna end.....that does not get easier. It actually rips my heart out to know, no matter how good the outcome may be, that we are causing her pain. That we are putting her at risk with each surgery, and that I can't take the place for my baby girl. Hearing about kids who have pain, chronic issues, or choose to later amputate is so hard. This has really been an impossible decision for us. There is no right or wrong. No parent could easily chose to amputate or lengthen. They are both miserable choices. It's hard.
I know Gracie is not defined by her surgeries or condition. At least not yet. She is thriving and is a very, very happy girl. That gives me a lot of peace. Her surgeons abilities gives me a lot of peace. The support from my own private world of FH friends gives me peace. My family gives me peace. Friends who barely know Gracie offering to fundraise or lift us in prayer gives me peace. Knowing that God can bring good from ALL things, gives me peace. Some days, none of that is enough. Some days, the thought of what we are facing, the mountain of medical bills, the insurance world, the pain, the fear...it takes over and nothing helps.
We recently heard a service from a pastor out here about not worshiping our circumstances, but worshiping God. Keeping focused on him with continuous praise and worship in the midst of your pain....that victory is there, just beyond that. Far too often I worship Fibular Hemimelia and what it has done to my baby girl, our family and myself. I may not ever understand all this, but I do believe that if I can keep my trust in God, acknowledge the many blessings He's given us thru this, He will show me how to over come this, how to afford this, and show all of us how to survive this. He will direct our paths. I'm so grateful for that because when I'm in the midst of these storms....I can't see the path on my own.
Please remember, if you are going thru your own storms....trust in Him....He will guide you, He will direct your path. He sees all, and knows better then we do all the whys and what ifs....and He loves you. So much deeper then any love you can imagine. Easier said then done, trust me, I know. But so worth the fight over your mind to get to the places of peace He has waiting for us.
Prayer requests:
-that we can get the funds for her surgery and get it scheduled soon
-that Shriners hospital can help us with braces, lifts and shoe inserts
-that Gracie continues to progress
-that we have peace about all this
Here are some pictures of Gracie, and a video of her at the park the other day, (if I can get it to load). It shows the benefits of therapy and parents who keep encouraging her to try....to get back up when you fall, and try again. Hope you enjoy it!!! *****check out our Fundraisers tab to see the latest fundraising information!!!*****
