Tuesday, September 5, 2017

"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.


Thursday, April 20, 2017

"But blessed is the one who trusts in the Lord, whose confidence is in Him." (Jeremiah 17:7)

As usual, it has been far too long since I've posted an update on Gracie...but it was worth the wait, because I have a LOT of exciting news for you guys!

Our trip to Baltimore went well, and resulted in NO surgery!!! It was the first time we have gone out there and not had a surgery since Gracie was 16 months old! It really was good for her to see everyone and enjoy the playroom at the HP House without having surgery to accompany it. Dr. Standard is very pleased with how Gracie looks over all. While we didn't need surgery in December, we do have an upcoming surgery sometime this year that will be pretty extensive. When her 8-plates are ready to go back in, we will do a big combo surgery. At this time they will put in the plates, remove the screw in her foot, do an osteotomy of the ankle and correctly position and wire it, do something similar in her foot to correctly position and wire it, shave off some of her ankle graft as its poking out quite a bit, clean up some scar tissue and cast her. (So by nature this will end up being two surgeries as she will need to go under again to have the wires removed). Despite a pretty big surgery looming on us, we have enjoyed all of our surgery free time like you would not believe!!!! We are officially at 15 months surgery free and it's our longest time ever!!!!

School is going well for both of the kids, although I can't believe I'm about to have a kindergartner and third grader....they are growing so fast!! Gracie is giving me a good look at her feisty side, but she is really learning so much socially and emotionally that she never had the time to process having always needed to recover from surgeries. It's been a big year for her. She learned to swim, had her first cast free summer and is just doing so well over all. She has been struggling with balance and confidence in the strength of her body, (something that is always a struggle), but she's overcoming some fears slowly but surely. (I attached a video of her doing just that on a bounce house obstacle course)!!!!! AMAZING!!! It may seem like such a little thing to be so excited about her climbing up a bounce house unassisted, but when you have a child who has literally had to re-learn to walk, 9 different times, with a foot and leg in different positions and covered in fixators, braces, and casts...this truly is a blessing!!!

We recently had Gracie's IEP meeting to get her ready for kindergarten and it went exceptionally well! We got what we were hoping to get/what we really thought was in her best interest, and I'm just so blessed by how smoothly it went. Landry is finishing up his 2nd basketball season, dominating the court...of course, lol! Robert is ready for school to be over. The high school kids are beyond ready, which makes for an exhausting last few weeks. I am LOVING my job! I am learning and working on new stuff that is challenging me and I just truly am so excited! That could be a blog post on its own...so I just leave it at that. LOL!

We still haven't been able to find a new rental, although our landlord has been very accommodating with us....but we really are praying and hoping to get something we can afford that is closer to both of our jobs, with a bigger kitchen so I can finish unpacking, and grass in the back. (Just so you know what to pray for, lol)! Right now, I drive 45 minutes each way and Robert drives 60 minutes each way...so something closer would be very nice!

We decided to go with the health insurance thru my work, which was a big increase in what we were paying, but allows Gracie to live in AZ, and still get care in MD. It's a sacrifice, but it's one we feel is worth it to keep with her surgeon.

Thank you so much for all your prayers for Gracie and our family! I promise to keep you posted when I hear more about her upcoming surgery date. For now, if you could continue to pray for the following things, we would be grateful!!!!!

*That we would be able to find a rental before school starts in August that is where God wants us...

*That Gracie would continue to gain confidence in her physical abilities...

*That her aches and pain levels would be minimal and not slow her down (she is not walking very far right now without asking to be carried and her knee is hyper extending a lot. She's pretty off balance and feeling the aches from that as well).

There have been so many posts and really just times in our lives in the last 4 years where we truly had to dive in to the word of God, and our relationship with God. Where nothing made sense and everything was overwhelmingly difficult. Honestly, it has been hard to trust God the last 4 years....but the harder it was, the deeper we dove. We have so desperately clung to God, holding on to his hope and his promises, trusting when we didn't want to....it has been such a challenging season. While I don't think its completely over, I can tell you, there are blessings and JOY in putting your trust in the Lord. Huge blessings that might seem small at other times but are game changers in the middle of chaos. If you are having a hard time trusting in God, in his word and his promises....please get a hold of me. I will share our testimony in this area and would love to pray for you. In the meantime, we pray blessings, peace and joy over you. We consider you all an extension of our family. Prayer warriors and well wishers alike!!! Thank you for sticking with us for so long....we have a long way yet to go!

Family Easter Pic

I LOVE when they get along, LOL!

Someone lost her FIRST tooth!

From our Spring Break trip!


Gracie on the bounce house obstacle course