"But the Lord stood with me and gave me strength." (2 Timothy 4:17)

These updates have been few and far between lately because we have been enjoying our freedom from surgery!  This has been the longest time since Gracie was a newborn that she has not had a surgery.  Every set of x-rays that we would do, I would expect to hear that its surgery time...but we have gone 2 years with no surgery.  2 YEARS!!!!!!!!!!!!!!!!!!!  That has been incredible and such a blessing because we've spent the last 2 years watching Gracie LIVE and grow and not be bogged down with recovery or rehab or pain meds.  It has been such a blessing.

That being said, our season of rest is officially over.  Instead of drowning in the stress and sorrow of that idea, I'm choosing to reflect on the blessing the last 2 years of no surgeries have been for our family.  It's 2 years of not watching my child break, 2 years of not having to leave my son behind while I take my daughter to hand her over to a surgeon, 2 years of not having to buy only clothing that will easily go over a cast....2 years of watching her free to swim, bounce, run and play!  2 years of not having to watch her learn to walk again.  So even though this season of rest is over, another is coming....at some point, another is coming and I'm so grateful I didn't "wait for the other shoe to drop" the entire time and really enjoyed this.

In June Gracie had x-rays taken and everything looked good.  A couple days ago we had a follow-up set taken, and OMGoodnes!!!!!  The growth spurt this girl has had is unbelievable.  I posted the side-by-side below.  In 2 months she has just shot up.  It's crazy. Anyone who has FH, something similar, or has followed us long enough, knows that every single growth spurt has the potential to change our treatment plan.  It can push up or slow down treatment.  Well, this one sped it up.  Gracie will be having her 10th surgery in October.  It's not going to be the Fall Break we were hoping for, but at least we are already off school and work!  On 10/10 Gracie will have surgery in Baltimore, MD.  At this time, the surgery will include the following:  

*Insertion of at least a femoral 8 plate, if not that along with a tibial 8 pate.

*Removal of the screw that is still in her ankle.

*Osteotomy and repositioning of the ankle, setting it with a wire.

*Osteotomy and reposition of the foot, setting it with a wire.

*Clean up scar tissue.

*Shave and contour down her ankle bone with with the grafting still protrudes out too much.

*Casted.

Now, once we get there and Dr. Standard can see her in person, he may change some of this, or add to it.  The plate(s) are a for sure thing.  Everything else was what we have discussed doing, and final decisions on that will be made the day before surgery.  If this surgery goes the way its planned, this will be one of her most invasive surgeries.  Anytime an osteotomy is done, its just plain rough.  There is no way around it.  I'm still waiting to hear what recovery will be like, but she will definitely be in a wheel chair for a while, and may end up missing at least a week of school beyond the 2 weeks of Fall Break.  After the last osteotomy that she had, it took her 4 weeks just to learn to walk again....recovery has gotten slower as she's gotten older and learned to anticipate pain.

We were also told on this last web chat where we discussed the x-rays, that Graice is ready for her first lengthening anytime we are.  I basically shot that down right away. LOL.  I am so so so NOT ready.  Before this growth spurt, we were told it would be a couple years.  But between this spurt, and some serious knee issues we've been having, our timeline may have changed.  We have recently found out that Gracie is missing an ACL and her knee just kinda gives out at strange times, along with lots of popping.  I'm hoping once we get out there, that a lift and a knee brace can help us hold off on lengthening, but we will see.  Lengthening is definitely not something I can just jump right into.  It's a 9-12 month process, includes 2 if not 3 or more surgeries from start to finish, an external fixator, spending 2-3 months in Baltimore or flying back every 2 weeks for clinic, along with land and water PT on alternate days and altering every piece of clothing she wears to work with a fixator.  It is a huge deal.  HUGE.  So for now, just to process what I know for sure we have coming in October, I am not even stressing over the lengthening.

Anyway...if this surgery happens as planned, it looks like we will be in Baltimore for 7 days, and possibly in-patient for 2-3 days post surgery.  It just so happens that this time will be during the annual Save A Limb Run, which is SOOOOO much fun.  We have only been able to go 1x, but I'm hoping Gracie is up to going this year.  Landry got to go last time (3 or 4 years ago), and it was awesome because he played with other kids who have to deal with all this stuff, just like him.  All of us got to be around families like ours and not feel different.  It was incredible!  I haven't told Landry it's going on, because when I started preparing him for the surgery, his first question was literally, "Can I come with you this time or do I have to stay here again?"  Talk about breaking my heart!  I told him if we could find a smoking deal on a ticket, MAYBE.  But come on, east coast airline tickets are NUTS!  And if we are approved for our tickets thru Miracle Flights, I can't choose the cheapest flight, I just have to get him a seat on whichever one they book for us.  So....we will see what happens.  My boy hates being left behind, and it hurts to leave him, but at this point, it just is what it is.  I can't settle on that too long or it eats me up. 

On a completely random note, before I start closing down this post...Gracie has been really learning a lot about herself this month.  At school she learned all about how God has made her unique.  After she came home and told me about it, I asked her what she thought was the most unique thing about her.  (Figuring she'd say her 3 toes).  She thought long and hard and said, "Oh, my hair!"  My heart swelled.  Seriously, if she doesn't feel any different because of her toes, then everything Robert and I and each of our family members are doing to make sure she doesn't feel "different," but instead just "normal" is working!  I was soooo happy!  She is also excelling at swim class!  She graduated to a new level and today was her first class in level 5 out of 8.  She was by far the youngest.  She is 5 and there are 11 year olds in the class!  After level 8 is swim team and she can't wait to be able to compete at something!  We talked to her instructor about swimming with a cast cover after her surgery and the instructor looked at Gracie and said, "why are you having surgery?"  (First of all, good for her for looking at Gracie and not me, because that's a pretty simple question she can totally handle).  Gracie shrugged her shoulders, stuck out her surgery leg and said, "because I have 3 toes."  LOL!  Like no big deal, this happens all the time.  We hadn't really talked to the instructors about her leg, because believe it or not, in the water, she's not at the same disadvantage as on land, and you can't really see her leg/foot.  So, all that to say the instructor was not prepared with an appropriate response, and she shrugged right back at Gracie, instantly, and said, "Well you have cute feet."  Then turned and finished the conversation with me.  It was the most perfect interaction you could hope for.  I love it!!!!  I know it won't always be easy or natural for her, but that she gets these times now, to lay the foundation and boost her confidence, its huge! HUGE!

When you are in the habit of a surgery every 3-6 months, there's a particular routine that sucks, but is comforting at the same time.  It's hard to explain, but Gracie and I both knew what we were doing, how we did it and what it looked like.  This break, while amazing, has taken that away from us.  Gracie is 5 instead of 3.  She completely processes EVERYTHING differently.  She remembers her last surgery, but not the "routine" feeling.  She is asking different questions and while she's super excited to go see Dr. Standard and the HP House, she is starting to show small signs of fear.  I on the other hand, feel lost without my routines.  I'm such an organized creature of habit that getting out of the surgery habit has me kind of in a haze.  I remember the stages I go through of complete organization, complete and total breakdown and then completely held together for her.....but I feel a little lost this time around too.  It's hard to explain but it almost feels like her 1st surgery, not her 10th.  That feeling is what lead me to this scripture.  I know God is with me, I remember the strength he has given me, each and every time, and I 100% completely trust Him to give me strength this time around too.  There is truly no other explanation for being able to lay on a hospital bed with your child singing to her while they wheel you both back into the OR.  There is no way, without Him giving me strength that I'd be able to hold the mask over her face and sing to her, telling her how much I love her, while her eyes slowly close and she goes under for surgery....letting me be the last face she sees with a SMILE, not tears! There's no other explination for being able to walk out of that OR and leave her on the table knowing her surgeon is going to come in and cut her open.  And there surely is no other explanation then God giving me His strength, when I can handle climbing into her PICU bed in recovery and hold her while she completely looses her stuff because she's become a bear coming off anesthesia. LOL!!!!  I could not walk this road, not one single step without God standing beside me and giving me strength.  When I get asked how I can be so strong, THIS verse is why!!!

So tonight, while this all starts to sink in and my heart starts to break a little for what I know is coming for my baby girl and my family.....I will remember and hold tightly to this verse.  

Please know that if you are going thru something (big or small compared to us, its truly all relative and what matters is how it affects you, not "what" it is).....God is there.  Standing beside you.  Even if it doesn't feel like it.  Even if it feels lonely, He has not shut you out or walked away from you.  He has not abandoned you, He has not left you.  You are not alone.  He is standing with you and ready to give you His strength....you just have to be willing to take it!  

If you could please keep our family in your prayers in the following way:

*Prayers that insurance and hospital approval go thru smoothly

*Prayers that the surgery and recovery goes smoothly

*Prayers that our Miracle Flights For Kids applications are approved

*Prayers that our hospital assistance application is approved

*Prayers that we get a great deal on a rental car

*Prayers that God provides for this trip 

*Prayers for Landry as he deals with being left behind 

*Prayers for Graice as she attacks this surgery from a different point of understanding

*Prayers for my husband as he stays home and works while Gracie and I go to MD

*Prayers for me, and my momma heart as I organize all this and start working on fundraising again

*Prayers for Gracie's health-any illness close to surgery time will cancel everything and cost us financially as well as time wise

Please know that we truly appreciate all of your prayers, and are here to pray for you as well.  You can either comment a prayer request here or get a hold of me personally.  We would love to pray for you!

A lot of you may be new to our blog, so feel free to look around and read about Gracie's experiences!

Thank you for being patient with such a long post and stay tuned for some much needed upcoming fundraisers!!!!  Here and on Facebook (See Gracie Run)!

Can you believe how big she looks!  And all that hair-that God gave to make her unique!

First Day of Kindergarten, Landry's Fist Day of 3rd Grade

Half-Day Fun

She caught her first fish this summer!  Got 2 of them!

She also got to sit on daddy's bench for the first time this summer!

Posing for the "pictures" which is really just x-rays of her leg, but she hasn't figured out her face isn't in it yet, so I always snap a pic!

Top two were in June, bottome in August

Crooked Hips!  This is the biggest length difference she's ever had in her legs.

"To everything there is a season. A time for every purpose under heaven." (Ecclesiastes 3).

It is so hard to believe it's almost Christmas time!!  This is by far our most favorite time of the year!  We have completely enjoyed the Thanksgiving holiday, and are well into our family traditions that come around Christmas time.  It is very exciting this year for the kids to be a part of a school system that recognizes that this holiday is truly about the incredible gift of Jesus, and takes time to establish that foundation with them.  The school Landry was at last year actually taught a lesson on Halloween about the "Day of the Dead," but when Christmas rolls around it's just about the "holiday party."  What a difference a year makes!

Robert has started basketball, and although the team is pretty young, they really are a great group of high schoolers.  I am hopeful he can get more wins then he is expecting this year, and that they develop a good bond.  They have had 4 coaches in 4 years, so there is definitely some trust that needs to be earned and Robert is doing an amazing job of trying to show them with his actions, the kind of coach he is.  Landry and Gracie are both loving their new school.  Landry is in 2nd grade, and if I remember correctly he is reading at a 4th grade level and spelling at a 5th grade level.  His biggest struggles are handwriting and just socially figuring out how to transition from "tattling," to handling issues with other kids one on one.  He has an amazing teacher who truly connects everything back to God, and uses Landry's relationship with God to encourage him in the areas he's experiencing "growing pains."  He has his first school strings recital coming up soon and I am so stinkin excited to go watch him!  I played viola pretty seriously as a kid, and I can remember how fun these concerts were.  I don't think he's quite as into it as I was, but my goodness am I excited to be a MOM this time around and experience it that way.

Gracie is doing great!  She has adjusted to her new school and schedule very well.  It is crazy to me how much she is growing up.  I have even seen some big improvement in her behavior.  I noticed she seemed to have some younger habits when responding to conflict, frustration, disappointment and anger.  It's like she would turn in to a 2 year old.  I don't know when it clicked for me, but at some point I realized she never really had the chance to learn to deal with more "normal" stuff.  She would go into full "fit" mode over the smallest things.  We started dealing with biting, hitting and throwing things.  We have worked hard on teaching her how to handle those issues and use her words to express how she's feeling.  It has helped a ton.  Not having surgery for just under a year has helped as well.  In reality, from 16 months old, until after 4, her little body and mind had to focus on recovery, learning to walk and do other things over and over again, heal and work on processing the trauma of surgery.  It's like it took every bit of her and left no room to learn age appropriate social skills.  Now that we've been on our longest break ever, she has had a chance to really grow emotionally and it's been incredible!  She is still strong willed~my goodness this girl could literally change the world~but that's just the way God made her.

About a month ago, we received an unexpected letter from Gracie's insurance company, notifying us that as of January 2017, they will not only be tripling her rates, but they will no longer be covering out of state care.  That is really concerning for us since really everything connected to her leg, (except for routine x-rays), is done in Baltimore, MD.  In researching possibilities to replace her insurance we found that all but one other company dropped out and those are now the only two private companies to acquire private insurance through.  Neither allow for out of state coverage.  Both have outrageous monthly rates, and one also has a $23,000 combined deductible and max-out-of-pocket.  Obviously those won't work for our family.  Insurance through Robert's employer is just under $800 a month when the kids are added on.  My employer is currently changing what they offer and the cost of it, so we aren't sure exactly what that is going to look like yet, but are praying it covers out of state care and is affordable for us.

All of the insurance issues just so happened to come up at the same time her latest x-ray was due.  Between what I was seeing her go through symptomatically and the look of her legs/x-rays, I thought she was looking like the 8-plates needed to come back in.  Her surgeon however, would like to wait until we do a lengthening and combine those surgeries.  That lead to me inquiring about what kind of time frame we were looking at for lengthening.  Due to the combination of losing out of state coverage, and the fact that we haven't been seen in the office for almost a year (YAY!), Dr. Standard thought it would be a good idea to get a quick visit in.  So....Gracie and I are scheduled to go out to Baltimore next week.  Dr. Standard is going to do a full clinical evaluation, and a new updated long-term care plan.  This will help us if we need to end up taking Gracie somewhere else, which is an entirely scary subject for me.  Once you have a level of trust with a Dr., the thought of handing your baby over to a different surgeon is something I can't quite put into words yet.  There may be a quick surgery while we are there, but that's only if her lengthening ends up being farther down the road.  If he's thinking of doing the lengthening sooner, we will hold off on any surgeries.  But, if it's a ways off (like I was thinking it was), I'm not sure her leg can wait that long without any correction.  Right now she is back to turning her foot in.  This time it is coming from the hip or knee which is concerning.  She wears an AFO so I know the foot turning is not from her actual foot area.  She is also talking to us more and more about lower back pain.  All in all, I think this will be a very productive, last minute trip.  As always, I will keep everyone posted more frequently while we're gone on her facebook page at See Gracie Run.

It's so amazing to think we haven't had a surgery in almost a year.  This is the longest break from surgeries that Gracie has ever had.  She "averaged" a surgery every 6 months.  At one point a couple were even within 3 months of each other.  Being able to enjoy watching her just be a girl has been so nice.  She swam all summer, just finished with swim lessons, and is about to start dance lessons.  She has run and played like crazy and it has been amazing!  We are slowly getting the typical symptoms of aches, lower back pain and some unusual swelling....but overall it has been a pure JOY to watch her just be a 5 year old little girl!  She has such a love for life!

This verse really spoke to me because we have been, and somewhat still continue to be in in a season of struggle.  It has been such a challenging 4 years for our family in general, but I am overcome with such gratitude to have had this season of peace with her medically.  I am so grateful God has shown me how to recognize and navigate these seasons, and that I didn't miss the realization that this was a blessed season with her.  I know not every season will be this calm, but we ALL have truly enjoyed our season of rest where her leg is concerned.  Now if we could only have a season of rest with life itself...lol...but we are immensely blessed regardless of the season God places us in, and I pray you are as well.   

Prayer Requests:
-that we are able to find good, affordable health coverage that allows for out of state care.

-that the cost of her new insurance does not take away from our ability to move in to a new rental that will be better for our family.

-that this appointment, even though last minute, is productive and successful.

-that Gracie's symptoms are easily addressed and alleviated.

Our big 5 year old girl!

Kids loved this farm we went to over Fall Break.  

"The animal whisperer."  Seriously, this girl loves animals.

The one second she was so serious at swim class.

Landry played football and is now starting basketball and loves both!

Robert and I got a chance to sneak away for quick-close Boise game.

"Trust me in your times of trouble, and I will rescue you, and you will give me glory." (Psalm 50:15)

WOW!!!  I just realized that I haven't posted an update on Gracie since BEFORE her last surgery.  I could have sworn I'd updated everyone on her progress from her January surgery....but I definitely did not.  Please bear with me, as this will be a long and informative post.....and I'll try to do better with updating. :)

Gracie had her last surgery in January!  You heard that right....January!!!!  This means we have had the longest break in surgeries since Gracie was 16 months old.  This also allowed her to have her FIRST surgery and cast free summer since she was 16 months old.  And we made the best of it!  I think this girl lived in the pool.  She has finally, absolutely fallen in love with the water this summer.  It was truly such a joy watching her free to run, play and just be a kid this summer without the constraints of recovering from a surgery.  Her January surgery took out the large (6 screw) plate that was on her tibia, and the 2 smaller 8-plates that were on her lower femur and upper tibia.  She recovered very nicely from the surgery.  I couldn't believe how well she did.  It was hard for me, because this was the first surgery where I had to leave her to go back to work full time afterward.  I took some days off, and handed her to my mom who did an amazing job caring for her until she was ready to come back to school.  It was just hard on this momma not being the one there doing the caring. 

Our biggest issues with this surgery were the bandage removal, and a new found allergy.  I swear taking off the bandages is almost worse than the surgery itself.  She screams like she's being tortured at every little move of the bandage.  With a lot of patience, A LOT, and some coconut oil and alcohol rub (on the outside of bandage only), we managed to do our best job yet.  It was slow going, but that's always better then hurting or scaring her.  Her new found allergy was by far our biggest scare that we've had.  Gracie was in recovery following her surgery and was experiencing a bit of break thru pain.  They gave her some morphine (which she's had before, or a family member of morphine anyway), and she had a severe allergic reaction.  The nurse was amazing and caught it before I even did. Her entire face swelled up and got red as a beet.  Pictures do not do it justice.  I thought it was just a mild issue until 4 other nurses surrounded us and were keeping a constant watch on her.  Her main nurse asked if he could give her benadryl immediately.  He said he would put orders in, but it would take too long to get them approved and she needed it now.  So I gave him permission, still not realizing how severe of an issue this was.  I'm usually more on top of it, but I guess it just caught me so off guard I was just shocked.  Anyway, it was very touch and go, she was so medicated she wasn't really alert and waking up and the reaction was spreading...but the benadryl did the trick.  Apparently an allergic reaction to morphine is SERIOUS, and can cause death.  They were extremely concerned with her breathing since you swell so quickly.  They were talking about intubating her again, but her O2 levels remained stable.  All in all, it was scary, but they did an amazing job catching it and caring for her.  This surgery was outpatient and we were supposed to be back at the HP House by lunch time.  When we were finally cleared to leave, it was almost 9pm, and the poor nurses were shouting to me as we left, "don't forget to tell every doctor about that allergy."  CRAZY, but God was with us and she was ok.  Tired and a bit more worn out then usual, but ok.

The rest of the school year continued as normal.  July 2015 to June 2016 was truly one of the worst years of our lives, and definitely one of the most difficult.  We felt attacked on every level.  Financial, marriage, parenting, emotionally and spiritually.  For being as close to God as I have felt for so long, I felt lost and alone.  I knew in my mind that God was there, but I couldn't feel Him, I couldn't find Him, and we were just so devastated by so many different things.  It was my most spiritually challenging time to date.  To not have my mind and my heart connect...to know God was still there, but not feel Him, and to be hurt and angry.....but still trying to dig deep and connect with Him, was very hard.  Some days I didn't want to go to church, I didn't want to worship, I didn't want to even yell at Him.  I just felt so alone.  So Robert and I decided to hang on tight and keep praying.  We both spent most of this last year doing just that.  Going to church when we didn't want to, raising my hands in worship and forcing myself to focus on God when I didn't even want to sing.  It's probably why my posts started slowing down too.  I just didn't want to write the same old depressing stuff every post.  I was also sick, literally, every month from June of last year until May of this year.  Double ear infection, upper respiratory infection, on antibiotics monthly sick.  I was exhausted in every way.

I know I'm not the only one to feel like I have a deep/close relationship with Jesus, only to feel like He disappeared and left me to rot with life.  I know I'm not the only one who didn't know what to do with those feelings.  And I know I'm not the only one who choose to work thru them.  But I am sooooooo glad that is what I did.  I'm so glad I forced myself not to "walk away."  I'm so glad that as frustrated as I was, I forced myself to worship and pray and go to church to learn more about Jesus.  It was not easy, but there truly is something to be said for digging in and sticking around even when it feels like there's nothing there.  I've realized that sometimes you have to listen to your mind, to what you know, even if your heart doesn't feel it.  And I'm so thankful for the people in my life who encouraged me to focus on God thru this last year.

I don't know what changed, but in June, everything seemed to refocus.  Blessings just started pouring out on us.  As a family we were beyond excited for summer and the much needed break.  We felt like we really had some down time to just unwind from the craziness of the year and spend some time together.  We found out Gracie wouldn't need a summer surgery and we would get our first long break since we started.  Then I was put on a med that my amazing doctor was willing to try as a hail mary to help my immune system quit attacking itself.  I changed some eating habits, and feel like I found the "perfect storm" of food/meds and supplements to keep me healthy.  While I still feel some effects of the autoimmune (hasimoto's), I have been doing 1 million times better.  I had the energy to enjoy my family this summer instead of just sleeping every second of my time off.  I have had the huge blessing of not being sick since the end of May.  I did get one light cold, but miraculously it stayed just a light cold....so I don't even count that.  Its incredible the optimism that can blossom out of you when you aren't literally sick all the time.  

Robert and I were also blessed with very last minute and unexpected jobs that got him back in coaching, made up for some of the pay cut we took to come back to AZ, and got me back working in a Christian school.  Those blessings also allowed us to move BOTH Landry and Gracie to that school.  (Something we spent all of last year praying for).  Landry, who absolutely hated everything about school last year, who was miserable, felt like he didn't fit in, and was bullied.....is LOVING school again!!!  His teacher is absolutely incredible and I thank God for putting him in her class daily.  I don't know her very well, but you can tell she truly loves and prays for these kids, and Landry feels safe and comfortable with her.    We sold Robert's car and bought my parents older (but well cared for car) for Robert, so he is now able to drive with good air conditioning. 

I don't know if we are in a season of blessings right now or if we have just had some prayers answered the last couple months.  I hope its a season of blessings.  A LOOOONG season of blessings.  LOL.  Either way, I am grateful for not giving up on God, and I am grateful for all the amazing things He had to do to provide these blessings for us.  We are still broke, but it feels like we've won the lottery the last couple months.  It's just amazing!!!  

This verse speaks to what our year was like.  It was all about trust.  There were many times I said that Lauren Daigle's "I will trust in you," song was my anthem for the year.  I wasn't perfect at trusting last year, but I'm so glad I didn't give up.  I'm so glad I spoke "trust HIM" over my mind and heart when it needed to remember those words.  If you are going thru something, and the struggle is real and deep and it feels alone....He is still there.  Even when you don't see Him, or feel Him....He is still there.  Talk to Him, out loud, get angry, cry and ask Him to hold you.  Just don't back away from Him.  When you want to walk away the most, worship the loudest instead.  There are blessings to be had for pushing thru the hardest of times focused on the fact that you CHOSE Him, even when you didn't FEEL Him. 

Tonight, I am giving God all the glory.  The turnaround in our lives in just the last couple months has been amazing and left me in awe to see what comes next.  It has deepened my trust in Him as He has graciously allowed me to see some of the inner workings of what He spent this year doing while I was struggling so much.  He wasn't gone.  He was working HARD to answer my prayers.  He was crying with me and carrying me thru.  I want you to know you can trust Him too.  With anything!!!!  The harder the circumstance, the closer you need to lean in and abandon your will to trust His.  

Prayer Requests:

*We are hoping to move out of our rental (it has been a nightmare to say the least).  Prayers we find a house where the kids can play outside and where we can cut our commute down.  Also one big enough for us to fully unpack, (where I can use all my kitchen tools), and we get both vehicles in the garage would be nice! 

*For Gracie's upcoming surgical needs.  Her ankle is still giving us trouble, and based on x-rays we just got yesterday, I think she will be needing the plates put back in soon.

*For the fundraising / finances for Gracie's upcoming surgery.

*That this would be a long, joyous season of blessings for our family.

Thank you for being patient while I take forever to tell you about the last few months, and for sticking with me while I avoid posting.  I hope to be better at it this year.  If there is anything our family can be praying with you for, please comment or email me.  We love you guys so much.  This journey with Gracie would be even more overwhelming without this little community of prayer warriors we have here.  Thank you for those prayers, for the good thoughts and well wishes.  Here are some pics of the family!  

God Bless!

She realized her pre op nail polish matched her OR gown.

She is a pre op PRO!

Morphine allergy as it got going.  Looked way worse in person.  CRAZY!

We try to do 1 fun thing each surgery visit.  This time was the Baltimore Aquarium.  This girl LOVES all animals!

Grandma surprised her with Frozen on Ice when she got home from Baltimore.

Finally feeling good enough to enjoy some fun with my family!  Swimming at moms was a daily thing this summer.

4th of July.  How is she getting so big?!?!?!?!?!

Coeur d' Alene.  Cold, 59, rainy.  I was out in my tank top trying to soak all the cold weather in.  It was gorgeous!

Kickin up her feet, relaxing in the hot tub.

This boy....it was so nice to see real smiles and laughs from him again this summer.

Look at how handsome he is!!!  And a REAL smile for school!!!!!!

So blessed they are both on the same campus, and I get to work there!  Time needs to slow down though!

Gracie was giving me all the emotions from the Inside Out movie. LOL.

My heart can barely hold all this love.  She is getting so big, and loves life so much.  

"I have this hope as an anchor for my soul. Through every storm, I will hold to you." ("Anchor," Hillsong)

I think all of my posts, with the exception of maybe 2 or 3, have started with a verse from the bible. It's usually a verse that fits what I am going thru at the time.  This post starts with powerful words from a song we heard at church that has griped my heart.  It completely encompasses where our family is right now.

This July, we moved back to Arizona.  It has been an overwhelmingly challenging transition.  While we were so so excited to come home, we have been shocked at how challenging its been for us to be back.  I've been avoiding positing because of how challenging.  There were so many family and friends praying for our return that is scary to share how hard its been.  I know they may not understand it, and are probably frustrated by it.  We barely understand it ourselves because we expected it to be different.  But, it's the truth.  I miss being home with the kids more then I can put into words, and am honestly still deciding on whether or not moving back was worth the sacrifice of not being home with them.  A full time job and all of Gracie's medical stuff is just too much right now.  I miss Landry being at Nampa Christian, miss being in a house we loved with tons of grass, and can not believe how much I miss the weather!  I'm a native Arizonan, so to be so emotionally connected to the weather has been completely unexpected.  However.....I LOVE LOVE LOVE being close to my mom and around my family again!  I love that Gracie is getting school with my mom, its such a special thing for them.  I love that the holidays are here and we are back.  I love being back in our church and with our church family.  I am so excited to see old friends and that we've made some new ones.  So, even though its hard right now, and a struggle....there are things I love about being back as well.

The kids are doing great.  There are things they miss too.  Gracie keeps asking for our old house, and both her and Landry ask for Nampa Christian.  They are in a time of transition as well.  Landry has had an amazing couple of months.  At the end of October he was baptized (yay!), and had football going on.  We all made some new friends during football, and that has been awesome!  Gracie has school with grandma 2 days a week (such a lucky girl), and then goes to public school 3 days a week. She is loving both, and doing so well!  Robert has been working on getting out of the education field, and is working on getting a part time job (along with his FT teaching), to help us out financially.  He is going to be taking some real estate classes and becoming a real estate agent as well, and we are excited to see where that takes him.  We are hoping, down the road, that can take the place of his full time job.  We are just waiting to see where God takes him with all of this.

Gracie is unstoppable, as usual.  She is getting tired quickly and does not like walking long distances. She is asking us to carry her and saying her legs are tired quicker then usual, but she has a ton of metal in her leg, and her ankle is causing problems.  Don't think that means she's slow though!  This girl is still making me chase her all around the house!

Gracie was due for her next set of x-rays in November.  After sending those in to Dr. Standard, he decided it was time to take the plates out.  Gracie will have her 9th surgery January 15th.  She is actually happy about it.  According to her prayer list at my mom's house, she has been praying for a chance to go back and see Dr. Standard and stay at the HP House.  She's been asking for them both for about a month now. LOL!  This crazy girl misses them, even though she only sees them for surgeries!  It is a true testament of how amazing Dr. Standard and his entire team are.  Of how amazing the nurses and anesthesiologists are, and of how amazing Amy and the staff at the HP house are!  We are blessed beyond measure to be able to take her there, and seeing her happy to go back, knowing what it means....says it all!

We are still having some serious issues with her foot, and are hoping the screw that is currently in her ankle will help.  It is the "slow," but less invasive way to try and correct the issue.  That being said, I do have a feeling once Dr. Standard sees, in person, how much of an issue its become, he will want to suggest a corrective surgery sooner then later.  We will just take that as it comes.  I'm getting relatively good at being flexible.  :-)  Gracie is showing some soreness and tiredness that is not typical, and is concerning...but we are playing the ankle issues by ear for now.  As it stands, this should be a 4-5 day trip, with hopefully nothing more then an overnight stay, if any in the hospital.  Plate removals are usually outpatient, but Gracie has never had 3 removed at once.  (2 smaller 8-plates, and 1 larger plate on the tibia).  I'm not quite sure what to expect as far as pain/recovery goes.  On a more positive note, I am completely looking forward to the possibility of meeting up with some other FH families who are in the area, and some who may be at the hospital while we are there.  We are like our own little family and community on Facebook, and any chance we get to see each other in person is such a blessing to me!

We are going to try and put another t-shirt/sweatshirt order in soon.  There may also be some other fundraisers coming, so please keep an eye out for both updates on facebook (See Gracie Run)!  Please be praying for this surgery trip, and our family in the following areas:

-safety (there was a US travel advisory alert)

-finances and blessed fundraising

-health for Gracie leading up to/during and after the surgery

-health for me (I've been on antibiotics 4x in the last 4 months)

-that we can take the slow route on her ankle and do not need to add that surgery onto January's to correct the issue immediately

-for Miracle Flights to approve our flight application

-for blessings and provisions in Robert finding a better full time job, and in getting a part time job that works with trying to get into real estate

Thank you so much for your prayers.  Please let me know how I can be praying for you.  We love to return the prayers back because they are such a blessing to us!

This song, the words just mean so much to me right now.  We truly are holding on to hope. I pray this song is a reminder to you that God is always there.  We can trust in Him and hold onto Him.  (Part of the song is listed below)

Anchor (Hillsong)

I have this hope

As an Anchor for my soul

Through every storm I will hold to You

With endless love

All my fear is swept away

In everything

I will trust in you

There is a hope in the promise of the cross

You gave everything to save the world you love

And this hope is an anchor for my soul

Our God will stand

Unshakable

Your word unfailing

Your promise unshaken

All my hope is in you

fun times getting away to the family cabin

Lala and Papa took us to Legoland and the ocean for Landry and Gracie's bday.  She LOVED the sand!

This girl is NOT afraid of some dirt!

Or some makeup! LOL!

She loves being back with her doggies!

Our boy is getting so big!!

Landry loved doing football again.  This kid is an athlete!

Gracie and I waiting for the big boys to ride some rides.

I love how much they love each other!

First day of public preschool

This is an accurate range of emotions when it comes to buying shoes.  Gracie is now 3 sizes apart and its NOT easy.

OUR BOY GOT BAPTIZED!!!!!

Thanksgiving fun with cousins!

Her right foot FINALLY reaches, so guess who learned how to ride a bike!?!?!?!?!

Time please slow down....she's getting so big!

Already decorated for the holidays.  Our favorite time of year!

These are the plates being removed from Gracie in January.  The screw in her ankle will stay.  (As of now).

"For with God, nothing shall be impossible." Luke 1:37

It has been far too long since I updated everyone on Gracie.  To my defense, (lol), we did have a major surgery, out of state move, new rental, new schools and new job to work around.  I am finding I have quite a bit less time then I used to, so while I have a free moment, I wanted to get this done.  I have also been avoiding it a bit because all these things at once has been quite overwhelming for my family and I just really haven't wanted to talk about it. 

But, its time.  Gracie had her surgery in June.  Everything went fairly smoothly.  There were some other issues we were concerned about, and once we had the chance to address them with Dr. Standard, he felt they warranted surgical attention as well.  This was no surprise, and they just added them into the surgery they had already planned.  All in all, Gracie ended up getting the Tibial Derotational Osteotomy, a huge plate to hold the osteotomy together, another 8 plate put into her upper tibia by her knee, a screw in her ankle to help stabilize it, the screw from the tendon transfer cut and shaved down, and her ankle bone contoured with grooves created to hold her ligaments.  We had our favorite anesthesiologist (Dr. Pepple), and you could definitely tell the difference.  She came out of anesthesia amazingly well.  The epidural was perfectly placed and she really did so good in recovery.  We actually had her in the play room either later that night or first thing the next morning. She went to the play room a couple times, and did fairly well changing from the epidural/IV meds to oral medication.  We did have some rough moments, where she was crying telling me how much it hurt, and one really rough night, but honestly, she did amazing. There was some adjusting that needed to be made on her medication, which made a huge difference in managing the pain, and then we were released on the 3rd day to go to the HP House.  

Typically Gracie recovers pretty quickly from her surgeries.  This surgery however, was the most invasive/complicated surgery she has had since her initial super-ankle done at 18 months.  This was a very traumatic surgery for her body, and recovery really showed that.  Her age and level of understanding has also changed how she recovers.  She had a lot of fear and anticipation of pain, which held her back.  Before she didn't know any better to "anticipate pain," and she would go until she was sore, then stop.  This time around she didn't go at all.  It took her 4 weeks to walk, and that was only because she was so excited to see her cousins.  It was 4 weeks of carrying her or strolling her everywhere we went.  Four weeks of watching our daughter figure out and learn how to walk again.

When she had her external fixator, it only took her 3 weeks.  This time around, recovery was probably the biggest hurdle.  The meds to help her her bowel movements made her puke every time she took them, and she really struggled with the oxy and baclofen (valium-like).  We did get her weaned off the meds fairly quickly and it worked well for her, which was so nice!  The long leg cast, (from crotch to toes) was such a pain!!!  That is now off, and she is walking around well.  She does have some range of motion and flex issues from the surgery and the cast, but once she is cleared for PT, I imagine that will be our focus.  We are a bit concerned because we are seeing her walk on the side of her foot again (which was the reason for the screw), but we have contacted her surgeon and are waiting to hear what they suggest for that.  (Videos and pictures were sent so they could get a good look/idea at what we were seeing).  

For me personally, I noticed that this surgery was much more emotionally difficult then the others have been.  Pretty much on the same scale as her first.  They are all hard, but I really struggled with this one.  Post surgery though, I am happy to say, I am finding routines that work good for me as her care giver and that helped me through some of the post surgical hurdles.  We are just enjoying our time with no surgery, no restrictions and no cast right now.  I have noticed that both Gracie and I are getting better at not hanging on to surgery as a lifestyle and moving right into our "surgery free enjoyment time."  Its hard to explain, but after surgery, there is an emotional lull where you just feel like this is never going to stop.  Even when she's running around, happy, I would look at her and think, "oh, but we have more to go."  Which is true, but not productive to enjoying whatever time off we have.  Once the next surgery was schedule I would start the entire process of being so heartbroken for her again.  Even months before the surgery.  I would watch her on the playground, recovered, and playing and think about how horrible the next month was going to be for her.  Missing the blessing of watching my baby girl playing happily.  Its a strange cycle, that has taken me a while to recognize, but this time around, I noticed it, and have done so well to bask in how good she is doing right now.  No worries about future surgeries.  (Well, a little concerned about what we're starting to see, but overall much much better at just enjoying our free time for her to be a typical 3 year old).

The move itself, has taken a toll on all of us.  The kids have adjusted very well and seem to be doing good.  Landry loves his new school, (I love his teacher), and is doing really well.  We are getting ready to sign him back up for football and basketball again, which he is really excited about.  Gracie was not ready for school because she was not potty trained, so she is being home schooled by my mother.  My mom is doing an amazing job and Gracie has already learned so much...along with being probably 95-98% potty trained!!!  Its so so nice to see some improvement in that area.  I have started working full time, which is good.  Honestly though, it has been extremely challenging to manage what I did while home, on top of a full time job.  I know people everywhere do it daily, but I could truly take just Gracie's medical care (school related, speech, bills, insurance, docs updates, PT, xrays, follow ups, etc.), and have a full time job from that alone.  Figuring out how to squeeze that in to the 2 hours I have before I have to get the kids fed and to bed after work, and the 4:30am wake up I have to get Landry to school and me to work....has presented a challenge.  I am doing great with work, but I miss being home and taking care of the house, cleaning, cooking and handling Gracie's medical stuff.  I'm old fashioned that way I guess, but if I had a choice, THAT is what I would do.  For now, I'm praying for God to give me extra hours in the day, and a way to still get these things that MUST be handled, done.  One way that will happen is having my mom take Gracie for her next set of x-rays.  I totally trust my mom to be able to do this, she's gone with us before, and Phx Children's Hospital is amazing at it.....but it truly just breaks my heart to not be able to take my baby girl and do this.  I don't want anyone else to be her caregiver.  That's my role and its strange to hand parts of it over.  Gracie is also getting ready to try out a dance class (to see if she's interested in taking dance lessons), and I will miss that.  (But I am super excited to hear how it goes).  These are things I have been blessed to be able to do, and now I'm missing.  I'm really struggling with that.  But, very blessed to have my mom near by to help.

Robert has started his new job and is adjusting to the feelings and emotions that come with all this change.  I really think that having major surgery, an out of state move, new home, new schools and new jobs was just too too much for all of us.  We are slowly settling in, adjusting to our new life, and are super excited to be back around some family, friends and our church...but its still a lot of change.  That being said, there is a lot that feels impossible right now.  Finances feel impossible, struggles with Gracie's IEP process feel impossible, new concerns on her foot, balancing my new role, Robert balancing his new roles....it all feels impossible.  Its just too much right now.  So I am holding tight to this verse.  I know and trust with full faith that because we are in this life WITH GOD, nothing....NOTHING is impossible.  I hope you are able to focus on that this week and let it give you a little reprieve of freedom from your own struggles.  We can do anything, we can overcome anything, and we can survive anything WITH GOD!

Prayer Requests:

~prayers that Gracie's xrays look good and we get good news from Dr. S on her ankle

~prayers that we continue to settle in and adjust well to our new roles/lifestyle here in AZ

~prayers that I can adjust to the AZ climate again.  (seems crazy, I know, but I am desperately missing Idaho weather)

~prayers that Gracie's IEP can be developed with HER best needs in mind

~prayers that our finances would improve as we work to pay off some debt and balance our huge stack of continuing medical bills

~prayers that I can find a disability lawyer to help me get Gracie approved for disability so we can get her medicaid.  (its the only way we can get her on medicaid).

~prayers that God would provide a new home for us, that we would be able to own or rent that is in a better area by the time our lease is up.  (we prefer to own).

~prayers for confirmation of an idea I finally got for writing a book (everyone has been telling me I need to write a book, and I could never figure out what to write, but I finally have an idea...just wanting confirmation its from God).

I truly believing that praying for others is something we are all called to do.  Even with everything going on, I have such a heart to pray for others.  Please let me know if there is any way we can be praying for you.  I can be reached here on the blog, or on facebook at See Gracie Run.  Thank you for your prayers for our family....they move mountains for us and we appreciate them so much!    

She was so happy Grandma was there!

Seriously, a pre-op PRO!

Our traditional "happy juice in full effect photo!"

Recovery/Post-OP

There are no words for how much I love this girl!

Distraction can be great medicine!

My bionic baby girl's leg!

For those who find this intriguing...if you zoom in you can see where they cut thru each bone!

She looks happy, but it was HELL getting her in the pool.  Once in she realized it wouldn't hurt and relaxed a bit.  For about 5 minutes.  LOL!

Recovery is hard work!

Preschool at grandmas, but I still HAD to take this picture.  She was so excited and is so ready to learn!

It's amazing to see her leg this straight and her foot this straight. 

Getting her to drink after surgery is so much easier when we make a game of it!