Gracie "walks in step with God; her path blazed by God, she's happy. If she stumbles, she's not down for long; God has a grip on her hand." (Psalm 37:23 The Message).

I love the verse for tonight's blog post.  Our church did a footprint of Gracie on Easter Sunday, and this was the verse that went along with her print, replacing the appropriate spots with her name.  It couldn't be more perfect for her right now....she IS happy, and she DOES fall, a lot right now too.  But I truly believe that God DOES have a grip on her hand.  I feel like He is pretty much the glue that is holding us all together right now.  I was hoping to post sooner, and really keep everyone updated, (and the posts maybe a little shorter, LOL), but its just been too hard.  By the end of the night when I get a chance to post, I'm really wiped out.  The energy that it takes to keep calm when things go crazy, and hold it together is really taking a toll on me.  So, instead of blogging I veg out.

We were very blessed to come home earlier then expected from Baltimore, and got home about 2 weeks ago. Coming home was kind of a roller coaster, as we went into the docs office with some concerns (possible pin infection, Gracie was very upset and hurting, and a strange popping noise that her fixator was making when we made the turns).  The infection was being handled, but they took xrays to double check what was going on with the fixator.  Turns out that the arrow that showed us the direction to make the turns had been placed incorrectly and we were making turns in the wrong direction.  Essentially we were pushing her bone together instead of slowly pulling it apart.  This was the reason for her pain.  Dr. Standard and the PA both agreed that the popping was occurring when the tension was too tight and the fixator was pulling back.  The bad news is she was in a lot of pain.  These turns are done slowly, with 4 small turns a day.  The pull back did the equivalent of about 20 turns at one time.  The good news is that God's protection was covering her even when we didn't know we had something to pray for.  The bone was pulled apart at the point they were actually wanting it at....we got to stop doing any turns, and that allowed us to come home.  Over a week earlier then anticipated and just in time for Easter!!!  I have to say that I really love these doctors/PA's and staff!  This was a mistake, but everything turned out fine.  Also, when I took Gracie in, she was not acting like she was at the house.  Kind of like taking a car to the mechanic.  She wasn't miserable, and seemed just fine, so I really appreciate that they listened to my concerns as a mother and double checked her leg.

We all have been doing good considering, and have been SOOOO happy to be home.  I felt glad to be back immediately, but it wasn't until Sunday, when we walked into church and FINALLY were doing something that was a normal part of our routine, that I  felt like we were really home.  That being said, things have taken a step back this last week.  Gracie had mastered re-learning to walk, and up until about 4 days ago was getting around pretty good.  We noticed the infection on her leg had never completely gone away, and had gotten worse.  The docs in Baltimore wanted us to start another round of antibiotics after only being off the other for one day.  The set back with the infection progressed and by Wednesday night she was in serious pain.  She was refusing to crawl or walk.  She could barely stand.  We had almost completely weaned her from her pain meds, and had to restart everything...in doses close to when we were released from the hospital.  She hasn't been sleeping good, and it just got worse.  When you picked her up she just cried in pain.  I got ahold of Dr. Standard on one of his web chats, sent him about 10 pictures because it really looked like the infection was getting worse, not better.  He agreed after just looking at 1, and they changed the medication Friday. The thought is that Gracie has MRSA.  We saw her pediatrician to have the sites cultured and verify that the new antibiotics will actually work on the infection.  They also decided to give her a shot to "jump start" the antibiotics.  Good in theory, but Gracie had a reaction to it, and her good leg swelled to the size of a tennis ball at the injection site and got red.  Yesterday was a big day of observations.  We are just now 24 hours in to the meds, and Gracie has started walking again, so I think they are at least helping.  The redness has not gone away and her pin/wire sites are still seeping, so....not really sure.  The injection site is looking better though, so that's good.  If her infection is not remarkably better by tomorrow, we may be headed to Phx Childrens ER for IV antibiotics. 

The same day that Gracie's infection started getting worse, I spent half my day at DES trying to get our family some financial assistance since Robert is now the only person working.  Turns out we don't qualify for anything.  I was shocked...I can't imagine how a family of 4 is supposed to make it on a teacher's salary.  It just amazes me.  Plus they refused to take into account any of Gracie's medical bills or situation because of the way its being billed.  I walked out of there crying and came home to Gracie in horrible pain.  By the end of the night, I was in my bedroom breaking down.  The stress of losing my grandma, losing my job, and Gracie regressing was just too much.  I still have not gotten a chance to really grieve losing my grandmother and it was just a very hard night.  This new, aggressive infection has just added to our stress levels.  I was prepared for this journey to be a struggle at times, but I was honestly, not at all prepared for infection after infection and to be dealing with doctors from the other end of the country.  It is so hard trying to work with them from here.  They do an amazing job...but not being able to be right there, make an appointment and see them in person, is hard.  It's a challenge I was not prepared for.  I'm really grateful that they do so much to make it as easy as possible for familys' to return home....I just wish it was an easier time for us right now.

Last night, Robert and I decided that we needed a night out.  We really didn't care if we went bankrupt for going out...we needed to be husband and wife and not caregivers.  So, we went and ate dinner and made a rule (got the idea from some good friends of ours), that there would be no talking about the kids, Gracie's medical condition, or money.  I was honestly a little scared that we wouldn't have anything to talk about....lol....BUT, we had an amazing time!!!!!  We ended up skipping the movie, (we'll wait till its at Redbox), but we had so much fun. 

Today, Gracie still has her infection, but she is walking again and is starting to feel better.  I'm hoping tomorrow is a miraculous improvement and we don't end up in ER, and that this coming week gets easier.  My body is feeling the weight of everything going on this last couple months, and I just need a break from this part of our journey.  Even in the middle of everything, I have been so blessed by cards/texts/prayers from our family/friends and church family.  I know that we are not alone in this, and that really helps.  I also believe that God has His grip on all of our hands....and feel like He is building a sermon in me from this.  Hahahaha.  Seriously though, there is a strong testimony building in our family and I can't wait to see what God does with all of this.

Please be praying for the infection to stop spreading...to go away and NOT come back.  We also would ask for prayers for God's direction, provision, peace and healing in our family, and for us to keep our focus on God, and not our circumstances.  He has been so faithful in everything He's done for us so far, we need to make sure we remember that He is in control!!!

(Look at our fundraiser tab for information on an upcoming 4/29 fundraiser for Gracie...more info on facebook group too)!

Here are some pictures of our time back home, and a video of Gracie dancing before the infection got worse.  This girl shakes her booty any time music comes on!




Decorating Easter eggs




Got her wheelchair, she loved it.



Decked out in turqouise, the color for Fibular Hemimelia.



My lil man took his first communion last Sunday!




Gracie was worshiping at Sunday night service.  I loved seeing this!




Got the basketball hoop set up finally, Landry loves it!




Smiling even at the docs office.  I love her spirit and strength.

 video of gracie dancing!

http://youtu.be/wH883y3RSh4

" For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever." 2 Corinthians 4:17-18

I have been meaning to post sooner, but it has been far more crazy then I imagined. I haven't even been able to read a book yet. Gracie is really wanting me near...when I walk away she just says "mommy, mommy, mommy," over and over till I come back. It might get old later but right now I'm enjoying it.   We are out of the hospital and back at the HP House (Hackerrman-Patz House), so I'm taking advantage of nap time and posting from my iPhone. Please forgive typos-lol. Before I update on Gracie I want to let you know I will be posting pictures that may be hard to see. I don't want to offend anyone with them, so I'm giving you fair warning now.

Gracie's surgery went very well. I had prepared myself for putting her under to be one of the worst experiences of my life and our little angel just dove her face right in the mask and started singing. It was hard, but not like I'd expected at all. I think it helped that the anesthesiologist was having her sing with him. I think she thought the mask was a microphone or something. Dr. Standard was very pleased with what they were able to do and said she is going to have a beautiful foot when this was done. It was so great to hear someone that's not family tell me her foot would be beautiful. Recovery was hard as she was still out and when she did come to was so upset they had to give her meds that made her sleep a little longer. The 2nd time coming out of it was much better. We all slept pretty good that night and she just did amazing!

Getting ready for surgery

In recovery, my brave girl

They let me ride in bed to her room, I just needed to be close to her

Awake and hanging out in her room

 

The day after surgery she was shocking us by flipping onto her tummy and rolling all over her bed, so they decided to take her epidural out on day 3 instead of 4 because there was concern she'd pull it out. Day 3 was the hardest. They were going to send us home on day 4, but waited because her pain was not managed. I was up all night with her and we were both overwhelmed. Day 4 was better and she even tried walking a bit. Day 5 we got to go to our home away from home at the HP house and were so happy to be out of the hospital.

Day 2, got out of bed 2x!

Day 2, I'm ready to go!

Day 2, kinda bored

Vroom Vroom, brother's gift came, an ambulance

Day 3, her Maggie Bear from grandma came

Got her toe splint, hot pink

  Day 4, Gracie tried walking again for the first time!!!  She wasn't in a lot of pain, but was very scared and frustrated.

http://youtu.be/TX53A1k2P9M

http://youtu.be/fyfRDmAqY6A

Glad to be home

I get to go home today!

Helping me turn her pins to lengthen/straighten tibia

 

Clinic Day, 2 FH friends

Standing all by herself!

Gracie's leg after first home cleaning

 Overall Gracie is doing amazingly well. She had her first clinic yesterday and they were pleased with how she looks. Getting back into any kind of schedule has been a challenge as well as getting back her appetite. Today Gracie had her first round of PT, and it was hard. She was frustrated more then anything. She wants to go like she could a week ago and is up in arms at being slowed down. For me, the therapy isn't as hard as watching her cry because she can't get into a toy she got into our first night here, or sit and get stuck because the fixator is so big. It breaks my heart watching her having to re-learn to crawl and walk.  While I know in my head its all necessary, for good reasons, and short lived....it hurts.

I've been told a lot lately how strong I am, and while I agree and appreciate it, (lol-it takes a lot of strength to go thru this), its really my baby girl who is so strong. I look at her and she's what I see when I think of strength. She has a metal cage surgically attached to her leg and drilled into her bones.  It takes away her ability to crawl and walk, and all she wants to do is play. Not wallow or cry or whine but play and giggle and have fun. She is my hero! How can I spend too much time crying about this when she's not???

We have been so blessed by everyone's prayers, the care packages we've received from home and by perfect strangers. A couple days before surgery we received an email from Paladin Sports that the women's running club would be running for Gracie at their May 4th 9k night run at San Tan Regional Park. They are having See Gracie Run printed on their t-shirts, and have started a fundraiser for her. This came all from signing Landry up for tball with them. They happened upon our blog and have been blessing us with their actions and prayers. A friend I've only known on Facebook lives out here in Baltimore and is bringing us dinner tonight. She reached out to her friends for prayer and the offers for visits and meals have followed. Our family has been praying non-stop, as well as our church family and friends. We have felt those prayers!!!  We just want to thank everyone for their love and support. I also want to thank my parents and Nora who have been loving on Landry and spoiling him rotten while we've been away. We miss him so much, but a lot less then we would if he wasn't getting the best care ever!

Right now, I see fibular hemimelia as a roller coaster ride. Some days showing you how strong you are, and others how weak. I do believe though, that it is creating in our family a testimony and strength that will glorify God. It has built, in each one of us things we cannot see, but will last forever. Please continue to pray for quick healing/recovery, no infections, health for our families, rest, and strength.

God Bless!

2 Days Post Surgery

I have snuck away from Gracie's room to quickly write an update.  We are 2 days post surgery and she has done amazing!  Today has been the hardest day and I'm hoping we get a better manage on her pain tomorrow.  Right now, Gracie starts calling for me if I walk into the bathroom, so I really can't update the blog just yet.  I hope to have a post by the end of the weekend.  I just wanted to let you know that we made it, and that she has been a fighter and is amazing me everyday! 

Either my mother or I have been posting updates on the See Gracie Run facebook page.  Until I can get a minute to blog, please keep up with us over there!  Thank you for your prayers!!!!

One Step at A Time

Normally I start each posting with a bible verse that helps me to keep my focus on God and gain strength from His word.  Today however, I have a message that God gave me, and I feel like it needs no verses, it spoke to me and it's really being pressed on my heart that it will speak to others.

Today is our last day in Arizona.  Tomorrow we start the new "normal" of our lives, and things change.  They may go back to an altered state of what they were, but our whole family will be forever changed by the events of the next month.  As soon as my eyes opened I wanted to puke.  I feel more weighed down and overwhelmed today then I probably have in the last year.  I've felt it coming on, but wasn't quite expecting the physical response that I felt this morning.  That being said, God is soooo good.  Not only did He calm my stomach rather quickly, but He brought to memory a vision He had given me a couple days ago.  I thought at the time I should share it, but I got busy and forgot.  This morning, the pull to share it was so strong that I'm the only one awake right now....while everyone else sleeps in, God got me out of bed to make sure others heard this message as well.  So, I pray that wherever you are in your circumstances today, this touches you and strengthens you like it did me.

In the vision God gave me, I was walking in this dark tunnel.  I was all alone, and the strength it took to lift my leg to take each step was overwhelming.  As I looked down to see why I could barely walk, I noticed a thick tar like substance on the ground.  The tar was making it difficult to move, its purpose was to wear me out so I just stood still.  I stopped for a minute and looked around me.  The tunnel was dark, and I was enclosed or surrounded by it.  I started struggling to walk forward again and all the things that I am juggling right now were running through my mind like a movie.  I do not want to leave for Baltimore tomorrow, I want Gracie healed here, I don't want to spend my 6th anniversary with my husband today, saying good-bye to our son.  I don't want to leave my son for 2 weeks, I don't want to hold my baby girl as they put her to sleep and then hand her off to a surgeon I trust, but who will be cutting her perfectly beautiful leg open, twisting and breaking it, and adding new parts.  I don't want her to have a cage on her leg and mostly, I don't want her to feel a single ounce of pain.  I don't want to think about how I just lost my job, or about how much my whole heart hurts and longs for my grandma.  Even writing these thoughts down has me in tears.  But this was where God wanted me in this vision, because this is where He showed me His mercy.  Suddenly I walk to a point where another tunnel opens above me.  There are stairs there, so I am able to climb out.  As long as I can get my feet out of the tar....as long as I want to work even harder to climb out.  God showed me that it would have been easier to stand there.  In the dark, thinking and mulling over what has happened and is happening so far in this very short start to 2013.  He wanted me to move, to keep focused, and to make progress.  To do that, I had to climb.  So, I took a step, and it was hard.  When I went to take my second step, I thought I was going to fall.  My legs were too weak from walking in the tar.  Instantly God was right underneath me.  Helping me up by pushing my butt up the stairs, one step at a time.  (Sorry, but God and I have a real relationship, and he doesn't always just give me a pep talk...sometimes He just pushes me up by my backside and says get on with it)!  While He was helping me up these steps, I was focused on Him.  On the strength I was getting from Him....I was not focused on all that today or tomorrow or next week brings.

That is where my vision ended, but my feelings of anxiety were suddenly replaced with peace.  Instead of thinking about what was coming, I was thinking about the cards I've gotten in the mail this week from friends giving us encouragement.  I was thinking about the care packages that the women's ministry at our church brought for my babies and me.  I was thinking about my brother who is dog sitting for us when he doesn't really want to, and friends who are pitching in to help out while we're gone.  I was thinking about our parents who have supported us like we could not even imagine during this time, and I was thinking about our church family...who has supported us beyond measure.  There aren't even words for the love, support and strength we have gained from them.  From ALL of these people that God has surrounded us with and placed in our lives.  Suddenly, I wasn't so weighed down anymore. 

This morning, when I woke up and felt sick...and God quickly calmed my stomach....He did it with just a quick flash of that vision.  The part of Him pushing my butt up the stairs.  We are definitely not alone in this.  He is with us, and He has blessed us with a community of loved ones pushing our butts up the stairs.  I still hate what's coming, but I know we can get through it.  I know we aren't alone.

I really feel like this vision was for me...but not just me.  I feel that someone else is supposed to hear these words and gain strength from them....and know that you are not alone in your tunnel.  That God is right underneath you, lifting (or in my case pushing) you out.  I pray that you hear God's voice and feel His presence as you read this.

One last little plug...if you live in Arizona, our church (Life Link Church) is having probably one of the best sermon series I've ever heard and it just started!!!  We will be listening online from Baltimore, but they have a 9am and 11am service if you're interested.  It's all about "Still Standing When It Seems Impossible."  The first sermon is available online at www.lifelinkchurch.com.  It was about learning to be a person that bounces back from life's circumstances, and what it takes to be that person.

Thank you for your prayers, for your love and for your generosity over this last year as we've prepared for what comes tomorrow.  Gracie's surgery is on Wednesday and I will be posting real time updates on her facebook group.  (Search "See Gracie Run" and join).  I will be posting on the blog as well, but more of a summation then immediate prayer needs and updates.  We have never felt more surrounded by friends, family and love and there are no words to express how much it means to us.  Please know that one day, we will pay these blessings forward!

"The Lord gave and the Lord has taken away; may the name of the Lord be praised." (Job 1:21)

The Lord Gave:

It has been a crazy couple of months.  So much has been going on, that its honestly hard to believe it's only February.  Its even harder to believe that we leave in 2 weeks for Baltimore, and Gracie's surgery.  First, I want to share our blessings.  We found out that we were approved for our application for assistance with our flights to and from Baltimore.  This is HUGE!!!  Robert, Gracie and I all have our seats covered for our first round trip flight, and I was told I could continue to apply EVERY TIME we had to fly out there.  My hope and prayer is that we are approved every time, but I am just really grateful for this time.  Three round trip tickets from Arizona to the east coast is outrageous and this is an enormous savings for us.  We were also blessed with the provision for a Pre-Surgery family fun trip!  Robert and I decided if God would provide, we would love to take our family (mostly for our son), to Disneyland.  Landry is 4, and the perfect age, plus we really just wanted to make something fun and not about Gracie, or surgery or the time we have to spend away from him.  God came thru with the provision for the trip in a way that did not take from our budget or Gracie's account and we set it up in secret.  We woke Landry up at 3:30am the morning we were leaving.  I had wrapped a present (Mickey outfit) for him.  He opened it and we told him we were leaving for Disneyland right then.  (I already had them packed and the car was ready to go).  He was shocked to say the least and I can not even begin to tell you how special this was for our family.  For the last year, almost everything we've done has revolved around the surgery, the recovery, the money, the fear, etc....this trip was busy and non stop, but so relaxing.  We arrived at our hotel around 1pm, and quickly unpacked and headed straight to the park.  About 2 hours into our first day, I asked Landry what his favorite part was so far, and he said, "Everything.  I love all of it mom, even the stuff we just walked by."  In just a couple hours, my hopes of allowing Landry to be his own person, not the brother of Gracie, and to be the center of attention and just have fun....was fulfilled.  I could not have been happier.  Gracie enjoyed the park as well and went on some rides.  We definitely exhausted that girl....she fell asleep in her stroller every day and she hasn't done that since she was a baby!  We also got to see some family and meet some new family and it was just an amazing time.






Gracie was saying, "Minnieeeeee"



     

Gracie loved the bus ride!

Spiderman was webbing me!

One of my favorite pictures!



She actually fell asleep like this!

We wore him out too!














"I love everything mom, even the stuff we just walked by!"

The Lord has Taken Away:

 

Sunday while we were in Disneyland I got a call from my mother that my grandmother was not going to make it thru the day.  There was not enough time for our family to get home before she passed, and so we decided to stay and make memories for our babies.  It is still one of the hardest decisions.  Those who know me, know that my grandmother and I were incredibly close.  I have been helping my mom care for her since I was 16.  For at least the last ten years my mother and I were her legal guardians.  For the last four years, I have been her personal caregiver.  She was my grandmother who I cared for, and my job.  My entire life we have had a special bond.  It only grew deeper the more I cared for her and stronger the longer caring for her was from my choice and my career.  Not being there when she passed, when I have been there for everything else is so difficult.  I know she was surrounded by people who loved her and cared for her just as much as me, and was holding my brother's hand when she passed....but I am struggling with the fact that I wasn't there.  I know she was so happy for us to go to Disney.  When I left work the Thursday before, I kissed her and said "I'll see you on Tuesday, we're headed to Disney!"  She got the biggest grin on her face and told me she was so happy we could go and that she loved us and wanted us to have fun.  I will never forget that moment.

 

Having her pass so close to leaving for Gracie's surgery is hard.  I know that God has healed her and she is no longer in pain, but I miss her dearly.  My kids miss her too.  She would always play football and hide and seek with Landry, and Miss Gracie, oh man...those two were two peas in a pod.  They were inseparable.  I will have to remind Gracie one day of how much they loved each other.  Please be praying for us, as I lost my grandma and therefore my job in the same day.  While not working is much more conducive to taking care of what's needed for the surgery, and Gracie when we return....we do not have the means for it.  We need prayers for peace, strength for now and our near future events, and provision....supernatural provision. 

 

Shortly after hearing my grandmother had died, God placed the song "Blessed Be Your Name," by Chris Tomlin, in my heart.  It really seems to fit where we are in life right now, and I hope it finds a special place in your heart too.  God Bless!

 

You can hear the whole song here:  http://www.youtube.com/watch?v=ZI6585ekuhg

 

But this is what stuck in my head....

 

Blessed be Your name

On the road marked with suffering

Though there's pain in the offering

Blessed be Your name

 

You give and take away

You give and take away

My heart will CHOOSE to say, Lord

Blessed be Your name

Loved when grandma gave me rides on her walker!









My inseparable girls!