Tuesday, December 6, 2016

"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.

Thursday, August 11, 2016

"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.