"Let all that I am wait quietly before God, for my hope is in Him." (Psalms 62:5)

Hope is a strange thing.  There are so many things I hope for, but only one person I put my hope IN. Life can cause me to question what I've hoped for, based on circumstances that occur, but I must never question who I put my hope in.  We have a journey ahead of us that is constantly changing.  If I can't place my hope in God, I don't know how I will make it thru everything with any strength left for my family.

I'm going to talk about Landry first tonight.  I sometimes worry or get caught up in "mom's guilt," because he often gets lost in all the Fibular Hemimelia of our lives.  He is an amazing boy and I am so grateful God chose us to be his parents.  Landry just finished up his first season of basketball, which he loved, and is having his first football game this Friday.  I absolutely LOVE watching him play sports.  He has so much fun, and is actually pretty good.  Its just a blast!

Gracie is growing, a ton.  Both physically and mentally.  She is starting to play with the kids at work more, and is even taking on some of their habits.  She tells me I'm cheating when she doesn't get her way.  LOL!

We had been hoping physical therapy would alleviate the need for an invasive surgery for Gracie.  After finding out what our insurance would cover, and what our costs for PT would be, we had to put it off while we applied for a grant.  The grant application has been turned in.  Now we are just waiting for the board to review and hopefully approve it.  In the meantime, Gracie's in-toeing has gotten worse.  Some days it's a little better then the videos below, other days she's actually hurting.  Its a weird off and on type thing, with more off, then on.  (If that makes sense).  She also developed bursitis over the area of the latest plate, which hasn't helped any.  Luckily a regimen of Motrin has helped the inflammation and it seems to be doing better.

Since her foot has only worsened, Dr. Standard felt that it has gone too far for PT to be helpful, and needs to be surgically corrected now.  (This was a surgery she was always going to need, we were just hoping to put it off for a while and give her body a rest).  So...when she has her current plate removed in June, they will place another plate in her femur to try and correct the knock knee that keeps coming back, and will also be doing a Tibial Derotational Osteotomy.  Basically, they will cut her tibia bone in half, rotate it in the proper direction, and then plate and screw it back together.  She will need to be casted after this, which means this will be her 3rd summer in a cast.  :(    Since this surgery is so invasive, they will use an epidural instead of a block, and Gracie will be in-patient for a couple of days.  Between travel, pre-op, surgery, and in-patient, we expect to be in Baltimore for at least a week.  We will need to return to Baltimore for a post surgical follow-up and cast removal 6 weeks later, and then again for another surgery to remove the plates 8 months after that.

When the unexpected happens it can cause quite a shock to how we handle and process everything.  This did just that, and it has taken me a week just to feel comfortable enough to update her blog.  We were really hoping to put this off a little longer.  There have been a lot of things hoped for that haven't gone our way lately.  But we still have hope.  Maybe now is the time I should focus on the beginning of this scripture...."Let all that I am wait quietly before God."  I don't "wait quietly" well.  Lol.  I like to organize and plan things so I feel like I have some control over what's going on.  Waiting is a challenge for me, but waiting before the Lord is just what I need to do.  Waiting, with my focus on God, provider of my needs, my dreams, my wishes and hearts desires.

So, while we plan for surgery, we hope and wait for provision.  While we plan for rehab, we hope and wait for a fresh anointing of strength and health over our baby girl.  While we plan for what our lives will look like the rest of this, and next year, we hope and wait quietly for God to move our many many mountains.

I pray that you have peace and confidence knowing you can put your hope in God.  That he wants the best for you!  "For I know the plans I have for you, declares the Lord.  Plans to do good, not evil.  Plans to give you a hope and a future." (Jeremiah 29:11)

Prayer Requests:
~ Provision for Gracie's surgery, and favor in fundraising
~ If the derotational osteotomy part of surgery can be put off longer once they see her in person, let it be
~ For God's will in our lives and our desires
~ For our entire family, as what happens to Gracie, also happens to mom/dad, brother, grandma/grandpa, Lala/Papa, etc.. It is hard on more then just us
~ For a smooth and complication free surgery and recovery

***One last side note.  With the help of my amazing mother and best friend Jenn...we are now on gofundme and twitter!  The link for Gracie's gofundme account will be available on the top right hand side of the blog next to the PayPal link.  It is http://www.gofundme.com/seegracierun2.  You can also find us on twitter @SeeGracieRun.  Please help us spread the word about our incredible baby girl and share this information!!!***

Thank you, and God Bless!
~The Peterson's

April is Limb Length Descrpency and Fibular Hemimelia Awareness Month

Tickle Fights with grandma

We were blessed to be able to provide a Sunshine Box for another family going thru some rough times.

Gracie was praying over our snack in front of all the kids at work!  So COOL!!!

"No chance at all," Jesus said, "if you think you can pull it off by yourself. Every chance in the world if you trust God to do it." (Luke 18:27)

****WARNING, some pictures are graphic****

Two years ago today Gracie had her first surgery.  She had the Super-Ankle procedure done.  It was her first time in an external fixator, the first time we handed our baby over to be cut open, the first of many scars, and the first time not being able to make it better for her.  It was also the second time we watched her learn to crawl, and the second time we watched her learn to walk.  It was when we learned as parents to really put our trust in God, and when we learned what God made our little girl of.  Gumption and Grace.

Since then, Gracie has had a total of 7 surgeries, with numbers 8, and possibly 9 to come this year.  She is incredible.  She is feisty.  She is a warrior.  She is everything God knew she would NEED to be.

Gracie has amazed us with her determination and resilience.  It's truly an honor to be her mother.  Today, she is sore from some current complications, (bursitis), but this is not typical for her.  Typical is making us chase her down for things, running and tackling with her brother, climbing anything she thinks she can, and amazing us all!

This journey is long, hard, heartbreaking, challenging, and stretching.  When there are complications, it is devastating; but when she's accomplished something she shouldn't be able to do, or couldn't do before...it is worth it!  It is so, so worth it!  Thank you for sharing in these last two years with us.  For your prayers, good thoughts, encouragement, and love.

With God, ALL things are possible!
The Peterson's

right before surgery

nothing beats daddy's arms

first time standing post op, took over a week

Learning to walk

That ugly fixator looks beautiful when it matches! :-)

First time seeing brother in almost 3 weeks after her first surgery.

"We put our hope in the Lord. He is our help and our shield." (Psalms 33:20)

In November, Gracie had a plate placed in her tibia to help straighten her leg as she grows.  Although this was unplanned, it was not unexpected because I could see it was needed without any x-rays. Gracie has recovered from that surgery very nicely.  Thank goodness because this was one of the emotionally hardest surgeries on me.  She was very aggressive after surgery and while healing this time around.  Not her normal self and it took a toll on all of us.  She still has aches and pains when she grows or when its really cold/rainy or snowy out...but all in all, she's doing amazing.  She is running around, climbing and back to her old self!  We are currently in the process of applying for a grant to cover the costs of therapy, and once that is complete (and hopefully approved), she will begin some pretty intense therapy.  This therapy is very important as it will hopefully alleviate the need for a major surgery this summer when they take her plate out.  The goal this summer is to only have the plate removed, and not any other surgical treatment done.  IF therapy does not work, then we will have the plate removed from her tibia, and at the same time, they will do an osteotomy, manually turn her tibia the direction it should be, and screw/plate it back together.  This should help her walk straight instead of turning her foot in.  It is a few days in the hospital, and most likely a week in Baltimore.  This surgery is pretty invasive, so they usually combine it along with the lengthening surgery.  Gracie's length however is holding pretty steady, and it looks like that surgery may be a couple years out.  She will have to have this procedure done either way, but being able to hold off until it can be combined is preferred. We are praying therapy is a huge success and this summer is just a quick trip out for the plate removal. 

It's been pretty crazy at our house lately.  We have been sick on and off for a couple months.  It seems as soon as one gets better, another gets sick and round and round we go.  This is NOT the kind of family sharing I like.  I have literally sanitized my house more then once and now just waiting for all of us to build up enough immunity to not get it anymore.  LOL.  Landry is playing basketball, and man is he good!  It is so cool to sit and hear other parents oooh and ahhh over his talent.  Seriously, every Saturday someone is saying he is one to watch out for, that this kid can play.  I'm a very proud mama that's for sure!  You can definitely tell this boy has been in a gym since he was a newborn.  We have signed him up for flag football this spring, and he is so super excited he can hardly wait.  I love watching him play sports.  It reminds me of watching and cheering for my brother when I was younger and it is just so much fun.  We are hoping to get Gracie signed up for something soon.  She really wants to play soccer.  I have been super hesitant because I'm worried about someone kicking her leg and her getting hurt.  The more I think about it though, the more I remember that we did not choose this journey for her to be limited.  We chose it for her to have opportunities to do whatever she wants, and we refuse to put her through all of this and then say no to something that she should be able to do....so I'm going to push myself outside my comfort zone and I think we're going to get her signed up soon.  I'm really trying to get her interested in swimming....that would be perfect for her leg and for future strength/recovery. 

Recently I was asked what Gracie's long term care plan is, and why we keep fundraising.  It got me thinking that many of you may be wondering the same thing.  So I wanted to take a quick moment and give a tentative layout to Gracie's care plan.  This of course will change as she grows and as the unexpected comes up.  

*Gracie will have 1-2 leg lengthening procedures.  To my understanding this is a process that will last approx. 9-12 months (depending on how many inches we are trying to gain, complications, etc).  She will most likely be in an external fixator (similar to super ankle surgery) for one, if not both lengthenings.  This will require either 3 months in Baltimore, or traveling back to Baltimore every 2 weeks for clinic (per lengthening).  It will also require intensive land and water therapy.  At this time, it is estimated that her first lengthening will be in 2-3 years.  Each lengthening includes 2-3 surgeries, more if complications.

*If therapy does not work, Gracie will need the surgery we discussed above now, instead of in combination with the first lengthening.

*There will also be sporadic plates placed in her tibia and/or femur to help direct the growth of her leg in the correct manner.  These will be a necessity throughout her growing years.

Basically, she will have surgeries on and off throughout her growing years.  They won't all be at one time, and we will have space in between them, hopefully more then we've had lately, but the best estimation I can get is that they will be needed.  We do not know how many or exact times on them with exception to this summer.  As an adult Gracie MAY require maintenance surgery depending on how she rehabs and how her body bears the trauma of the surgeries.  So....we will probably always be fundraising to some extent.   :-)  And, we will probably always need your prayers and well wishes too!

Thank you so much for going on this journey with us, for listening to my rants and vents on this blog, and for your support.  Emotionally, spiritually and financially.  There is no way to describe how the support we receive has helped us.  From the Fibular Hemimelia (FH) support group on facebook, to friends, family, churches, strangers and more....you all help us more then you know!  

Prayer Requests:

~Please be praying for a couple FH families.  One has a little girl under 2 years old who is having her first surgery (super ankle) this morning and will be wearing the external fixator Gracie had.  Prayers that surgery/recovery and rehab all go smoothly would be appreciated.  Also for mom and dad.  This little girl is a twin and has a brother who will need them as well.  It's such a stressful time and comes with a roller coaster of emotions.  Prayers for strength, peace, and supernatural energy for them is also appreciated.  The other FH family has a son (about Gracie's age) recovering from his first lengthening surgery.  As I understand it, the lengthening is going great, but physical therapy has been a challenge and this little man is needing some prayer in that area.  Prayers that he would cooperate at therapy, that he would not be scared or in pain, and would be able to communicate this to his parents when he is.  Also, prayers for these parents.  It is so easy to place blame on yourself as you go thru this.  Blame that they aren't rehabbing well, blame that they are hurting, that there's an infection, etc....  Combine that with a lack of sleep and stress and its such a challenge to come out the other end feeling like you can do anything right.  These amazing parents are in the middle of this process and need these prayers.

~Prayers that God would guide our family in some desires we have laid before Him.  Prayers that Gracie would continue to heal well, and that therapy would be helpful.  Prayers that we are approved for the grant to help with the costs of her therapy.  Prayers for health over our entire family/home!

When things get overwhelming in life, it is good to know God is with us.  It is so comforting to know we are not alone.  We are blessed to have our faith and relationship with God.  I know that not everyone has the same faith, and I appreciate that I can share my beliefs here, along with Gracie's journey, knowing that those who believe pray, and those who don't, still read, still care.  They think of us, and wish us well.  We truly appreciate it all!  

For us, being able to place our hope in the Lord has carried us in ways we can not even begin to explain.  It is my sincere prayer for you that you find a relationship with God.  That you come even closer to Him then you may already be, and that you know, with your whole heart that He is your helper.  That He is your shield.  God Bless!

Home for Christmas!  Kids loved time with Grandma and Grandpa.

While we were back in AZ, Gracie had a follow up on her heart.  (Surgery in July 2013).  We got the all clear for checkups every 2 years now!!  She's doing great!

This girl loves her Uncles.  This is Uncle Drew!

Landry enjoying some of the advantages that come with a tall Uncle!

A little scared, but finally got up there herself!

Gracie finally transitioned to her big girl bed!!!  It's a work in progress but she's doing better then I expected!

Coach and his mini me.  Love this pic of my two boys!

Perfect shot of his age's 3 pointer!  LOVE watching him play!

Gracie's latest x-rays.  Difference is probably about an inch, hips are off, but the plate is doing its job.  As soon as that leg is straight we will remove the plate.  (Until the next growth spurt sends it growing out again)! :-)

"Search for the Lord and for His strength; continually seek Him." (1 Chronicles 16:11)

Last Sunday Gracie and I traveled to Baltimore to meet with Dr. Standard.  This was a scheduled post surgical follow up from her tendon transfer/plate removal surgery in June.  Gracie, as usual, did great on the plane.  We had a total of 3 flights, leaving the house at 5am, and not getting into the Hackerman-Patz House (HP House), until 7:30pm that night.  We were exhuasted to say the least.  I was trying to figure out what to do for dinner when I got a phone call from a friend in the area.  She was kind enough to drop off food for Gracie and I, and we were able to eat a fresh meal as soon as we got there.  It might seem like a small thing, but we had airport/airplane food all day, and we were wiped out.  To not have to drive for take-out, be able to relax and settle in, and enjoy some good food was a HUGE blessing.  Not to mention it saved us a bit on our strict budget.

Last Monday was Gracie's appointment.  She was so excited to see Dr. Standard.  When his PA came in, she again, said, "No, I want Dr. Standard."  The PA laughed and said he would be in.  Then distracted her very well and looked Gracie's leg over.  As soon as Dr. Standard came in, Gracie literally jumped out of her chair and gave him a hug.  This is such a testament to the kind of man, and doctor he is.  With rare exceptions, Gracie only gets to see him when he is getting ready to do another surgery.  The fact that she doesn't associate pain, but joy with this doctor fills my heart.  I don't think I could handle it if she was terrified of him every time we came in.  Anyway, as soon as he saw her foot and leg he told me she was going to need another 8-plate...sooner then later.  Exactly what I had been thinking, but dissapointing to hear.  I wanted so badly to be wrong.  He also agreed that the screw in her foot (from the tendon transfer), was sitting up too high and could use being shaved down a bit to be more comfortable for her.  He was thinking surgery in January.  For us, that is complicated becuase we move over to the new Obamacare insurance mandate in January.  We will still have private insurance, as we don't qualify for the cost share...but its under the new laws/rules.  This means our visits are limited and our co-pay/deductible go up significantly.  Seeing as how we have already met our deductible and max out of pocket this year, I asked if there was any way to do the surgery while we were there.  (We do not have the resources to travel back out there again, rent another car, pay for more food, the HP House, etc....).  He said he was completely booked the next day, and then remembered a note on his desk.  Left to check it, and when he came back said there had just been a cancelation that morning, and he could squeeze her in.  I was so happy and so heart broken at the same time.  I can't describe the guilt I felt instantly for asking if we could do her surgery.  I was telling him thank you, and saying, "I bet you are wondering what kind of mom asks for her child to have surgery."  I explained the insurance issue thru tears.  He was so wonderful to comfort me.  He literally had at least 4 other patients to go see and he stopped to remind me that insurance will always be a part of her treatment plan.  That its a necessary evil, and that I wasn't asking for anything he didn't already say we needed to do.  I told you he was amazing right!?!?!?!?!

Gracie and I left to prepare for the next days surgery, and his office went to work getting approval from our insurance.  As hard as it all was, God's hand was definitly there.  From the last minute cancelation, to approval from insurance, to Miracle Flights changing our flight home, to our stay at the HP House being covered, and to extension of the rental car.  We didn't have money for extra food, lodging and transportation, yet it all worked out.  I also want to thank a couple of annonymous donors who deposited money into Gracie's medical fund.  You blessed us more than you realize.  It allowed me to get her a small pre-surgery treat (something we try to do every time), and covered the rental car and food.  Gracie and I enjoyed a nice lunch and then I took her to the Disney Store Outlet (her first time in that store) for her treat.  She was in heaven.  Lots of ooohs and ahhhs.  She finally settled on a stuffed Bullseye from Toy Story.  Another blessing from God, it was 50% off and only $10.  Its pretty rare to find something decently sized for $10 at the Disney Store.  It was a total score, and Bullseye accompanied her into surgery the next day.

Pre-op went well, Gracie and I are kinda becoming pre-op camps.  We have a system down and it was fun.  The PA remembered that Gracie loved Frozen, and pulled up Let It Go on her iphone as we were wheeling into the OR.  By the time I laid her on the bed and put the mask, (her microphone) over her face, she and all the OR nurses/techs were singing Let It Go together.  It was just the sweetest thing.  I hate leaving her in there, but couldn't ask for a better team to be in there with her.  Surgery was about 3 hours, and went well.  The plate went in the upper part of her tibia (at or below the bottom part of her knee).  Dr. Standard decided once he got in there to drill the screw in her foot down a little more instead of shaving it down, just for more stability for the tendon.  Gracie was hurting in recovery but they gave her some meds and that seemed to help.  The biggest difference this time around has been how she reacted to the anesthesia and/or pain medication.  She has been beyond challenging.  I have had to physically restrain her from hitting, biting, scratching, kicking and head butting me.  I have been called a jerk and poopy face more then I care to say.  It has been hard.  It's not my baby girl, I know that....but wow!  I am going to have to remain flexible to keep up with how these procedures change as she gets older and feels/understands things differently.

We are now a little over a week post surgery and Gracie is doing good.  We are still having melt downs, but they are slowly getting to be less and less.  This morning was her first day back at work with me.  We were there for 2 hours, (go back later this afternoon), and she was wiped and sore when we got home.  It'll take some time but she'll get back to normal soon.  Unfortunately we will probably have another surgery shortly after that.  :(

Please be praying for us.  This is the first surgery that I have had to manage recovery and work, and its stressful and complicated.  My boss/job is amazing, so they aren't making it stressful, its just hard to miss and hard to go when she's not exactly at 100%.  Also be praying for Gracie's recovery.  As soon as she is able we have a script for some intensive PT to help with her in-toeing, (the way her foot turns in and trips her).  Dr. Standard said this is something that gets fixed during the first lengthening (cause by her bone being twisted the wrong direction), because its a pretty invasive sugrery.  He likes to package them as much as possible.  However, since her length is looking so good (YAY), her lengthening could be put off to possibly 3-4 years, instead of 1-2.  Neither of us believe leaving her foot as it is for this long is a good idea.  We discussed doing that surgery while we were there as well, but he would like to try PT first, and so would I.  IF we can get PT to work, we can hold off on this surgery.  IF it doesn't, it is likely she will have this surgery when her 8-plate comes out.  (We have xrays every 3 months, but the thought is her plate will most likely need to be removed in late Spring or Summer).  This surgery requires a 2-4 day stay in the hospital, and probably a week+ in Baltimore.  It will consist of another osteotomy (cutting her tibia bone in half), and then manually twisting/turning it into the correct position.  Please pray we can avoid this thru PT.  If you could also be praying for me, I would appreciate it.  The unexpected surgeries are much harder for me to handle emotionally.  Typically I experience all my crazy emotions months to weeks before a surgery, and then I'm ready to go...ready to focus on Gracie.  This surgery, although I wasn't surprised by the need for it, was unexpected.  I was out there alone with Gracie, (while my amazing husband and in-laws held down the home front), and it has taken an emotional toll on me.  I am exhausted, stressed, sad, and everything else.  Its getting better, but I'm struggeling right now.  I wish we didn't have to do any of this.  I tried not to get my hopes up about this break in surgery we were supposed to be having, but I must have because I am devestated that we are at least looking at 1, if not 2-3 surgeries next year alone.  Emotionally and financially I don't know how we are going to do this.  But we have to.  And we will.  Lastly, please pray for our new insurance plan.  I went down and spoke to Blue Cross on Monday.  I told the lady there the most important thing I needed to verify was that I got Gracie on a plan which allowed us to travel out of state for her medical care.  We did get her on a plan that is a PPO, and that Dr. Standard uses, however we were told that the big push right now thru the government and Obamacare is to not allow out of state treatment.  Poor thing, I broke down right in her office.  She was patient and just told me to make sure I work very closely with the doctors and the insurance company and push for what I need.  Please pray that this is NEVER a problem for us.  If it ever became an issue, our only real option would be a huge financial miracle where we could afford to pay cash for her care, or move to Maryland.  Neither seems very realistic...so prayers are needed and appreciated.  Especially as we are already looking at multiple surgeries next calendar year. 

Todays verse is so personal for me right now.  I am on a rollercoaster of emotions trying to come down from the last week, and stressing about the next year already.  I know I can't do this without the Lord's strength.  I'm so very grateful for His presence in my life, but I need to keep focused on continually seeking Him.  Only His strength, only His presence will get us thru these trials.  Thank you for being patient with my extra long prayer list today.  Please let me know if I can be praying for you in any way.  Praying for others is one way that really helps me to stay focused on Him, daily, and it would be my honor to pray for you.

I hope you all had a blessed Thanksgiving!  We did!!!  Between surgery, weather, and rescheduling the flight to come home on the busiest flying day of the year...we weren't sure we'd make it home to celebrate with family.  It was such a blessing that we were able to get in the night before Thanksgiving!  Definitly something to be thankful for!

A long day at the docs office, followed by the extremely hard choice of which toy to get at the store...wore her out.  She choose Bullseye.

When you are in preop and your baby girl wants a crown.  Playdough and crayons do the trick!

sleeping it off in recovery

had to have bulleye with her

glad to be back at the HP House where she could relax more

We usually stay a day post surgery in Baltimore.  This time however, in order to make it home for Thanksgiving, we had to leave the day after surgery.  she was wiped out and in a lot of pain.  baby girl had to have my hand right on her face like this to fall asleep.

waiting for our plane

she had her own seat, but needed some cuddles.  apparently bullseye did too.  lol.

one of the first times she stood after surgery.  she loved doing the tree with her brother.

pure, innocent joy!

2 hours at work (school) this morning and she is done for

this is what she does immediately after her full fit break downs.  needs cuddles.  i do too, they are hard to handle.