"But The Lord Stood With Me and Gave Me Strength." (2 Timothy 4:17)

2013, A Year in Review

January: our most "normal" month of the year.  Landry started at ASU Prep and we loved it!

February: We took a family trip to Disneyland, my grandma passed away, and I lost my job.

March: Gracie started her surgical journey to 2, even, functioning legs.

April: Gracie had an unexpected surgery to replace a pin and clean out an infection in her external fixator. My dad was shot in the face accidentally on a hunting trip....and survived!!!!!!

May: May was recovering and rehabbing for Gracie, from her 90+ days of solid infections and my dad from his accident.

June: Gracie had surgery to have her fixator removed and cast put on.

July: Gracie had her cast removed and was enjoying her free leg!  She also had a hole in her heart closed. Our family announced we were selling our house and moving go Boise, Idaho.

August: Robert got hired as Caldwell High Schools varsity basketball coach!!!  The biggest move of our lives.....or mine anyway....I left my hometown and we headed to Boise for a new adventure.

September: Just a hard month of transition.

October: Gracie had another surgery to have an 8-plate put in her knee.

November: We lost out on 2 house offers and walked away from a 3rd after the inspection.  Landry and I got the chance to surprise family and friends by showing up for Thanksgiving. We finally found a home church out here in Idaho.

December: Our Christmas trip to AZ got canceled because of 2 months worth of  sickness.

This year was hard and challenging.  It was filled with more trials and struggles then I can even count or want to remember.  The verse for this post is absolutely perfect though.  We have survived this year. God stood with us. He gave us the strength we needed to not only survive but grow.  He was faithful. Even when I felt alone, or when I was holding Gracie again because she was in so much pain, or had to leave my son for her surgeries, or when we left everything I've ever known and moved to Idaho, or when my little man struggled to transition here, when I was scared, exhausted, overwhelmed....He was there.  He never left me and I know that, because I would not have survived this year if He had.  He also blessed us this year.  I have been able to stay home with my babies, help Gracie heal and recover after her 5 surgeries, take my little man to school and play dates, and be a house wife.  This is such a miracle. He answered a prayer and dream of my husbands to be a head boys basketball coach and and run his own program, He surrounded us with friends, new and old to help us thru this year. We were never alone. I am so thankful and grateful for that.

No matter what this year brings we are never alone, and God will give us strength.  I and hoping and praying for a year free from life changing crisis, less surgeries for Gracie, less drama, and less change....and instead a year of blessings, and boring normalcy. Lol.

To everyone who made a difference in our lives this year, who sent good thoughts prayed, donated, loved and encouraged us....you will forever be in our hearts and prayers.  Thank you....you made a real difference our year!!!!!

(Gracie is doing amazingly well. She is running and playing and has just inspired us all so much.  She has at least 1 surgery that we know of in 2014 to transfer a tendon...we will post more on that as it gets closer.  Enjoy our year in review in photos)!!!!!

HAPPY NEW YEAR!!!!!!  2014 be good to us!

http://Youtu.be/1chsLP1p5ao


2013 In Review, "You're an Overcomer!"

"For I am about to do something new. See, I have already begun! Do you not see it?..." (Isaiah43:19)

Well we have been getting settled in our new home.  The landlords of the place we're renting are awesome, our neighbors are awesome, and basically we've started settling in.  Landry and I have probably had the hardest time adjusting. Robert has had some struggles as well...Gracie is a champ.  She's too young to really take it any other way, and has just been keeping us on our toes!  We have started the house hunt again, and hopefully soon will be in our own home!

Landry is going to a Christian school that we love.  Last week they had a grandparent's day program and the pre-k classes sang about 7 songs.  Its amazing to see how much he is growing and learning.  He came home the other day and told us that Jesus was the rock of his salvation.  We couldn't be more proud.  

Robert started coaching junior high football when we moved.  Last year I think the team only had like 2 touchdowns and didn't win a game.  This year they won at least 3 games.  It was fun, a LOT less stressful then basketball season!  Basketball off-season open gyms have started, and try-outs will be here before we know it.  Crazy time is upon us!!!!

We are getting ready to head back to Baltimore this week.  Gracie has her surgery for her 8 plate to be placed in her knee on Friday.  Hopefully Saturday she is feeling up to us going to the Save-A-Limb Run and hang out with other families who are on the same journey as us.  We have taken a leap of faith (one of many this year...lol), and purchased a ticket to bring Landry with us.  He really has struggled with transitioning to our new home and we just didn't feel comfortable leaving him behind again.  It's so hard to do these trips, and know what we are bringing our daughter to endure, but its hard to leave him behind too.  So...we are praying and waiting on God to provide.  Just where He  likes us this year.  

This surgery will be Gracie's 5th surgery in 7 months.  When I think about that, it just blows my mind.  She is such a fighter, such a happy baby, and these surgeries haven't slowed her down one bit.  She is running around and loves chasing her brother.  Watching her and Landry chase after each other at night before bed makes me so happy.  It's strange that its also breaking my heart because I know she will be down for a bit after this surgery.  I was originally told only 2 days until she walked again, but a family in our group who just went thru this had about 8 days of non-weight bearing.  I just hate that we have to do this.  I've really been struggling lately with how much pain Gracie is having to endure.  One thing I've been realizing is that there is no guarantee as to how Gracie and her body will respond to each surgery, each step towards two even/functional legs.  There are stories of children who are doing great, adults who are doing great, young adults who are struggling, procedures that don't go as planned, and chronic pain.  I have had to do a ton of praying that Gracie's journey is as pain-free as possible, that her recoveries are as smooth as possible....and that we got the "complications" out of the way with the first external fixator fiasco.  Its not easy being parents who have to make such hard choices for our baby...but its not easy being Gracie, and if she can do this with such grace and joy....we can stay strong and give her the best chances and environment possible.

Please be praying for us to have safe travels, for Gracie's surgeon Dr. Standard, that there would be NO surprises during the surgery, that God would bring his much much needed provisions, that God would guide us to the house that's set aside for us, and to a church we can call home here.  Even in the struggles of this year, I can see there are new things God is doing in our life.  I can't wait for the moment that the blessings that come from obedience start pouring in...and am working so hard to recognize them, even in the struggle.  They are still there, and keeping my heart focused on how blessed we are keeps me from drowning in our year.  Please let me know if I can pray for you...you have carried us in prayer, and we want to do the same for you!

"But I am trusting in you, O Lord, saying, "You are my God!"" (Psalm 31:14)

We have officially made it to Boise!  We got here August 12th and are unpacked and "settled," so to speak.  There are things that are very different from Arizona, and drive me crazy, and things I am loving.  The weather is warm,  but its cool in the mornings and evenings and that is so so nice.  

The transition has been hard, but we are hanging in there.  Landry is doing a little better now that school has started and has already started making new friends. He is attending the same Christian elementary school his daddy graduated high school from.  He  has to learn a bible verse every couple weeks, and starts his day off with prayer in school....I LOVE it!

Robert is doing good.  Basketball hasn't started yet but he's coaching junior high football and enjoying that.  They had their first win last night, after only scoring 2 touchdowns all last season!  His new school is a lot different then Perry, so he's got his own transitions to adjust to, but its going well. 

I am missing home like crazy.  I have some good days and some hard days, but I assume that's part of the process.  We still haven't found a new church to attend.  That's been very hard, but we are determined to find the one we are supposed to be planted in.  

Gracie is doing great.  She's getting some flexibility back in her foot and is running!!!  We have her knee surgery coming up in October where they will place a plate in it to help her leg grow in the correct direction. She has what they call a "valgus knee."  It's common in children with FH, and should be a minor surgery compared to the others.  The great part of this trip is that it is scheduled at the same time as the annual Save-A-Limb Ride/Walk/Run. A lot of FH families travel for this event and there is a huge picnic with fun things for the kids to do.  We weren't able to go last year, but are so excited to be there already for surgery and go this year!  We are hoping to be able to bring Landry this time, as we think it will be great for him to see other families like ours, and not be "left behind" this time.  He's been having a hard time adjusting to our new home and I think it would be special for him to be a part of this and not left at home.    

I will be holding a virtual fundraiser for this trip, as  Gracie's last trip to Baltimore depleted our medical fund for her surgeries. I have realized that moving has placed an added burden as far as fundraising goes because our amazing community of supporters is back home. Hence, the virtual fundraiser. We were hoping to have a 2nd Annual See Gracie Run, Poker Run this fall, but I'm not sure we'll be able to make that happen this year.   So, starting today, I will be holding a month long fundraiser under both my Scentsy and Mary Kay websites.  100% of these funds will go directly to Gracie's medical account.   As always if you want to donate directly to Gracie's account, you can go to any Bank of America, and donate under account #457020662424, (Heather Peterson).  You  can also donate via the PayPal button on this page. Please know that 100% of everything that has and will ever be donated goes directly to Gracie's care, the cost for transportation, lodging and food.  (Even though we have been blessed to have been awarded coverage for most of her flights to Baltimore, we are still charged a transaction fee every flight, per person.  It's significantly lower then the cost of a ticket, but it all adds up).

www.peterson3907.scentsy.us    (You can ship directly to yourself)

www.marykay.com/hpeterson3907   (You can ship directly to yourself)

I know that I have said many times before how much we appreciate all of your love, prayers, support, and donations.  It has an even deeper connection for us now that we have moved.  I didn't realize how much I would miss our community and our support, how out of touch with everything I would feel.  I know you are all still with us, but it has felt like we are all alone at times, so thank you really does not even come close to how grateful we are for you all! 

Please keep our family in your prayers as we continue to transition into our new "home," for Gracie's upcoming surgery, and provision for our family's needs.  This has been a time of needing and learning to have great measures of trust in God.  We have never been so far away from family, so financially strained, and had so much stress in our lives and marriage as we've had this year.  It has been hard, and that's an understatement.  But we keep pushing on, diving in, and TRUSTING God.  Because despite it all, we do know, and believe, that ANYTHING is possible with Him! 

If you have something I can be agreeing with you in prayer for, please reply to this post, email, text, or Facebook me.....I have loved hearing your prayer requests and being a part of seeking God's will in your lives!

God Bless!

Saying goodbye was so hard to do!



Wiped out from the move

This is what Gracie does when I say its time to change her dipaer, or go to sleep, or anything she doesn't "want" to do.  She thinks I can't see her.

Talking to her shadow!  LOL.  She is getting such the personality.

Landry's first day of Pre-School, 2013. 

Ready for football to start!

Loving my time alone at home with my baby girl.  So very blessed.

An amazing park we found for the kids.  Has a rock climbing area, playground, water park, and oversized musical toys.

Fun at the water park!

Baby girl is getting so big!

 

"I have made you and I will carry you; I will sustain you and I will rescue you." (Isaiah 46:4)

On Monday we headed to Gracie's cardiologists office to get both her and my son their heart check-ups.  First I would like to shout our praise reports!!!  Our son Landry was born with Ventricular Septal Defect (VSD) and a heart murmur.  Basically he had 3 holes in his heart that failed to close.  He is almost 5, and has been monitored yearly to see if the holes will close.  (I would like to add that we were very blessed with his condition because sometimes it can require medicine or surgery...Landry has needed neither.  Other then the monitoring, its been like he's had nothing wrong at all).  Monday we learned that the last hole has finally closed!!!!  Yes, no more monitoring, no more VSD, and his murmur is so light you can only hear it at rest!!!  Since it seems like every post has been a downer, I want to really take a moment and enjoy this huge answer to lots of prayer we've been receiving over 4+ years.  It doesn't really change anything for Landry, because he was not on any restrictions, but it sure is nice to know its closed and we don't have to bring him back anymore!

Gracie had 2 holes in her heart that should have closed after birth and didn't.  One was a PFO, and the other a PDA.  We found out Monday that the PFO hole has closed, which is great....but the PDA has not.  At 2 years old the treatment for this is closure of the hole.  Our amazing cardiologist was going to give Gracie a little longer and see if it would close on its own (although he was doubtful), until he found out about Gracie's problems with her infections during the external fixator, and that she has more surgery in the near future.  Any infection that gets into Gracie's blood stream has the potential for infecting her heart because this hole serves as a portal.  After hearing that Gracie had staph, and 63 days of antibiotics and pain meds, he went back and looked at her echo again to double check for signs of infection in her heart.  Thank God there are none.  It did however change his opinion on the timeline for closure, and he has recommended that we close it immediately....like before we move.  It is a simple procedure where they go in thru her groin, and as I understand it, is fairly similar to a stint placement.  She will have to be put under again, which is always hard for me, but it shouldn't be too bad for her, and recovery is quick.  The biggest positive of this, is that once this is closed, we don't have to worry about her heart anymore either!

So, I got the call from Phoenix Children's Hospital today, Gracie will undergo the catheter surgery on August 2nd, at 7:30am.  They are not sure if they will keep us overnight or not, but told me to come with an overnight bag just in case. If they keep us overnight it will most likely be because of her age to observe/monitor her.  Gracie also has another surgery planned for October.  We will be going back to Baltimore again to have the 8 plate put into her knee to correct it from growing in.  (Valgus knee).  This was not what anyone expected....but it will be nice to have these things done, and then truly have some surgery free time for a while.  I'm REALLY looking forward to that.

We are going to start packing up this week, and getting ready for our move.  I can't believe how fast the time is going.  Its been very challenging to go thru everything we've faced this year, but I really do feel like God has carried us thru.  And when we needed just a little more, I feel like our family, our friends, our church family and complete strangers have helped carry us too.  We are so grateful for you all!  Even with our support system, I couldn't imagine surviving this year without God.  Today's verse gives me hope and makes me smile.  We all need to be rescued sometimes, and God is the most perfect rescuer. 

Please be praying for Gracie's surgeries to go smoothly and with as little pain as possible, and for her recovery to be the same.  Also for our finances and future fundraising ideas, along with our move.  We appreciate your prayers so much, and pray for all you.

God Bless!

"Create in me a clean heart, O God; and renew a right spirit within me." (Psalms 51:10)

Last Sunday we flew back to Baltimore to have Gracie's cast removed.  Monday was such an exciting day because we literally hadn't seen our baby girls leg with NOTHING attached to it since early March.  I was a little concerned at how she would do with the cast saw, (we'd seen some kids serious freak out over it)...but she did great.  She was very intrigued by the whole thing, and just sat there and let the tech remove her cast.  When they started pulling it apart, and she saw her leg, she giggled.  Seriously, she giggled.  I guess I never really thought she'd care one way or the other about seeing her leg...but she was excited too!  AND...we can now put shoes on BOTH of her feet.  This may not seem like a big deal, but we are beside ourselves with excitement over it!!  She hasn't been able to wear shoes without a brace on her right foot because her heel and ankle were such a mess.  This surgery corrected those problems, and shoes will now stay on!  (Different sizes for each foot, but they stay on)!!!

Dr. Standard says her leg looks great, and that her ankle is very strong.  We have to watch out and make sure it doesn't start turning outward again, but with the advancements they've made in these procedures over the years they are seeing a lot less of that, and it shouldn't be a problem.  She is not on any restrictions, and we left with her trying to walk down the hall.  We have a script for a small lift in her shoe and PT.  Right now the difference in her leg is 1".  There was just under .5 cm gained by straightening the tibia.  Had she not had 2 growth spurts during this process it might have been more, but she's growing like crazy.  One thing that we did notice, (I noticed even before the x-rays were taken) was that her knee is starting to turn in.  It's called a valgus knee, and its very common with her condition.  At our initial consultation, the doctor had informed us that knees are usually very loose with these kids (I think because they are missing so many joints, ligaments, muscles in their lower leg).  We were told at some point it may become a problem, and is a relatively simple fix.  We weren't expecting it to be this soon, and we were pretty disappointed to hear anything other then we're done for now....but it looks like she will need another surgery within a year.  Its called an 8 plate surgery.  Basically a plate will be inserted into her knee to keep it from growing in, and push it to grow out, or the way a normal knee grows.  It will be removed at a later point.

I'm glad that we have the doctors we have because honestly, even after hearing that we are looking at another surgery soon, I feel so confident in their work, their judgement, and I still end up feeling like we've made so much progress.  That being said, it was pretty disappointing to hear she'd need another surgery so soon.  One thing I need to realize in this journey, is that we may not ever be completely done.  There will be times when she will be able to rest from procedures and surgeries, but even as an adult, she COULD be looking at knee, ligament, hip, and other surgeries that come along with her condition and with years of work and wear on her leg/foot.  I know we made the right choice, but lately, I've really been struggling with the fear that she won't agree.  I hope, with all my heart that when she is older, she thanks us for choosing this path.  Not that it will be easy, or would be whether we lengthened or amputated, but that she would feel, deep in her soul, for herself, that we made the right choice, and it was worth it.

Today's verse is especially significant for me right now.  Our family continues to struggle with all the changes going on, and I'm starting to get a little irritated with God.  I know I can't stay in this place, but I do feel like I need my heart cleansed and spirit renewed.  Thankfully, God knows my heart, and He can do both!  We have missed the last 3 or 4 Sundays at church due to Gracie's trips and looking for housing in Idaho.  Tomorrow is our first day back and I am so excited.  To say I "need" to lay it all out in worship and prayer is an understatement.  I can't wait to worship God, despite my irritation, and be renewed and refreshed. 

Monday Gracie has an appointment with her pediatric cardiologist.  Please be praying that the hole in her heart has healed.  If it hasn't, we will be planning a surgery to close it.  Its a relatively minor procedure (not open heart, they go in thru the leg), but it scares me.  A lot.  Also, we would love prayer for our finances.  Its getting really challenging, and at least one, if not two surgeries more this year added on are impossible for us right now.  By the grace of God, and generosity of so many, Gracie's medical account has managed to last us thru all of our travel up until this point.  Right now, its depleted and we aren't sure how we are going to make these last 2 surgeries work.  Even with our flights covered (which is a huge blessing), we still have to pay for housing, vehicle rental, food, necessities, etc for each of these trips to Baltimore.  Surprisingly it adds up fast. 

We appreciate your prayers, thoughts, encouraging notes and texts so much.  Thank you for hanging in there with us during this journey.  It's going to be a very long road, (a lifetime for Gracie), but having you with us gives us more strength then you can imagine.  Your prayers mean more then we can ever explain.  Again, if we can pray for you, for any reason...please leave it in the comment section. I will update after Gracie's next appointment.

God Bless!

Watching her cast get removed

Trying to pull it off herself

Right after the giggle, came pure shock to see her leg and lift it so easily

She worked hard for these scars, and I couldn't be prouder

So happy to be out of the stroller and fit back in the cart and high chairs

Pretty proud of herself, she climbed up on the coffee table

Had to show off my handsome lil man too...he's getting so big

"Blessed is the man who trusts in the LORD, whose trust is in the LORD. He is like a tree planted by water that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit." (Jeremiah 17:7-8)

It's been too long since I've updated everyone on how Gracie and our family are doing.  Normally I have so much I want to say, and the challenge is finding the time to sit down and type it all out.  Lately, I've been avoiding it.  Mostly because we have just been going thru so much, and this is a place where I am raw and honest.  I do it in hopes that someone going thru a journey similar to ours can find strength in both the good times, and the bad...because its a form of therapy, and because I've learned that this is an opportunity to show people who may not have a relationship with God, how He is the most important part of our lives, and our journey.  But, sometimes its hard to be so honest, because I have to feel everything I type out...and that is what I have been trying to avoid.

First, I want to say that Gracie is doing GREAT!!!!  We were back in Baltimore in June to have her fixator removed, (we are hoping that was her last surgery for a while).  She did great, and was literally walking out of the hospital on her cast.  LOL...in fact, she has worn a hole in the bottom of it.   We head back to Baltimore, again this month to have the cast removed.  At that point, we are looking at therapy, but are done with the procedures for this first round of treatment.  Gracie will have a 6 month follow up, and that is when we will find out if she will have her first lengthening at age 3-5, or 7-9.  I'm not really sure that I'm looking forward to that news, because I don't even want to think about it yet....but since I'm a planner, you know I will want to have a heads up!

Since my last post, the "hurricane" I felt like I was in, got stronger.  I was kind of hoping it would settle and we'd get some normalcy back, but God had different plans. Right now, I no longer feel like I'm in the eye of the hurricane, at peace....I feel like I'm being tossed around, losing everything, just waiting for the final drop.  Don't get me wrong, I'm still finding many blessings in this part of our storm too, its just a bit rougher of a ride.  My husband was offered and as a family we accepted, a job in Caldwell, Idaho as the head boys varsity basketball coach and US History teacher.  When we talked about him applying for a job in Boise Idaho area, I thought it would never happen.  After all, its hard enough to get a job in your own state right now, let alone be chosen over local applicants.  God, had a different plan, and we move in August.  I am so excited for my husband.  Being a head coach has been his dream since he was 4 years old.  I know he will be amazing, and I just couldn't be more proud.  I also know, we will love Boise.  At the same time, my heart is breaking.  I've lived in Arizona my entire life, and my whole family is there.  My mother is about 4 miles from us, and we are so close.  Leaving our church hurts just as much as leaving my mom.  Most of the time I am ok with it because I know this is what God has laid out for us, and I truly believe with all my heart that there will be blessings on the other side of being obedient, even when it hurts...but, the closer it gets to moving, the harder the thought becomes.  On a more positive note...my dad has undergone a couple surgeries on his eye, and with all glory going to God, has not completely lost his sight.  He does not have full vision restored yet, but we are believing in God for it to come.  He is continuing to recover well, and really just amazes me.  You look at him, and there's no way you would think he was shot in the face 2 months ago. 

With everything that has happened this year, I'm really just trying to stay focused on God.  It has gotten harder to do over the last couple weeks, and since Him and I have a "real" relationship, He has gotten some attitude from me.  LOL.  Even though I'm mad that we can't get into a house right away, I see the blessing He gave us in an apartment right across from Landry's new school.  And even though I am already missing the home I love, I see the blessing in having our house sell in a week so that we were not having to carry two payments.  Even though I'm sick and tired of getting on a plane, leaving my son and going to Baltimore...we are at the end of phase 1 and I'm grateful.  Even though I'm scared to see what my baby girls leg will look like when there's nothing attached to it, but its small and scarred...I'm blessed its still her leg, and that we can finally put shoes on both feet!

I'm still looking for the blessings in our storms...but I'm tired.  I feel like the part of this scripture, where I am in a drought.  Not with God, but with life.  I hope that I have dove deep enough with God that even when the heat comes, I am able to remain green and still bear fruit.  Please be praying for our family as we make another trip to Baltimore for the removal of Gracie's cast and x-rays to see all the work that was done on her leg and ankle.  We would also appreciate prayers for a smooth transition to Boise, Idaho.  For the perfect home to reveal itself to us, and that I wouldn't feel like I was losing out by not having the home we have now.  For an abundance of provision to pour out over us.  We are hurting financially on top of everything else, and I trust God for His provision, but its hard.  We don't know what His plans are, our where it will come from...but we do believe we are on the path He has laid out for us, and we are giving it all to Him.  If there is ever anything I can be praying with you for...please leave prayer requests in the comment section.  I read every comment and my family and I would love to return the blessing of calling out to God in agreement for His will in your life as well. 

"But slowly, I'm learning God can bring good out of feeling exposed and afraid.  That vulnerable place reminds us we have needs beyond what we can manage by ourselves.  It reminds us we need God.  Desperately.  Completely."  "Our faith doesn't just need to grow big, it needs to grow deep.  Yes, we need deep faith roots."  "Deep roots anchor us when surprises blow like strong, unruly winds.  Deep roots hold us steady during the storm that didn't show up on the radar.  Deep roots find nourishment when the surface gets awfully dry.  Deep roots yield rich fruit."  "So, I'm learning to not be so afraid of what might be around the next corner.  Even if it does catch me off guard.  I close my eyes and whisper...deeper still."  (Lysa TerKeurst, Proverbs 31 Ministries).

Gracie, ready to head to Baltimore and get this thing off her!

5 minutes after coming out of anesthesia, smiling and saying cheese with the worlds best pediatric orthopedist, Dr. Standard.  She adores him!

One day later, walking on her cast, and hugging her "Maggie Bear," who also came out of her surgery with a matching cast.



Enjoying some time with Grandma (Great-Grandma) Maggie on the 4th.

We've been thru a lot together this year, but I wouldn't want to do life with anyone else.  I LOVE this man!

And the kids adore him too! :-)

"We rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us." Romans 5:2-5

I am not quite sure where to even begin this blog tonight.  There has been so much going on that I have barely had a chance to breathe.  I am writing from Baltimore.  It's 11pm, and Gracie is sleeping. I know if I don't write now, I probably won't for a while.

We have been having constant issues with Gracie's wire/pin site infections.  She has pretty much had an infection for 7 weeks.  A week ago Monday, we went in for her x-rays and ended up talking to her docs online in regards to the infection continuing.  Tuesday she got her 4th round of antibiotics perscribed, and Wednesday had a reaction to it.  We ended up at Phoenix Children's Hospital last Wednesday thru Friday for IV antibiotics.  In the meantime her surgeon and his PA advised us that one of her pins was loose, and may need to be removed.  We had the ortho doc at Phx Children's look at it, and he concured.  Dr. Standard (her surgeon) said it would be a relatively simple procedure, and we would be able to have it done in Arizona.  After being completely disrespected by one of the rudest doctors I have ever met in AZ, we decided to go back to Baltimore for this unplanned surgery.  The nurses there were amazing....but they couldn't do the surgery.  At RIAO, everyone is amazing.  I mean you really have to look hard to find someone who upsets you or is rude, or doesn't do a good job.  It is so hard to hand your baby over for someone to cut them open...we weren't willing to do it with a doctor we didn't like or trust.  So...back we went.  Gracie had her surgery on Tuesday, and we go home tomorrow.  Dr. Standard deep cleaned her pin and wire sites, removed the loose pin, and placed another one.  Due to the looseness of her fixator and the pin, we did not have the amount of bone regeneration that we would liked to have seen, so she will be in the fixator at least another 4-6 weeks.  At this point, I don't care as long as it does regenerate and we can get passed the infections.  As of today, her sites look great...amazing in fact and she is a happy baby!!!!

The decision to come back to Baltimore was easy in one aspect, but difficult in others.  Because we needed to get back right away, we could not apply for the grant that provided for our transportation out here the first time.  So while we were trying to figure out how to afford this unexpected trip, 2 round trip tickets for Gracie and I were donated to us.  It was the biggest blessing, I can't even tell you.  Last minute ticket prices are astronomical, and we were blessed with just what we needed and more.  These tickets were upgrade to FIRST CLASS!!!  You heard me, FIRST CLASS!!!  I can't even put into words how nice that was.  Especially the leg room because Gracie likes to kick the seat in front of her. Plus, she slept all but an hour of the way here, so people didn't hate me for bringing a baby into first class and I got to relax and enjoy the luxary!  I needed it too because planned surgeries are hard enough, but ones pulled out of thin air that you haven't prepared yourself or your family for are worse.

Gracie and I arrived in Baltimore very late Saturday night.  Sunday morning I got a call from my mom that my dad had been shot in a hunting accident.  Once again I was out of state when my family is going thru a major crisis.  I was going thru one of my own, but I couldn't be there for my mom, or my dad, and that has been hard to handle.  By the grace of God, my dad is still alive.  He was shot at 35 yards, a direct head shot, with a 12 gauge shot gun.  He has pellets from his waist up, one just missing his trachea, his jugular vein, and his bronchial artery.  There are pellets lodged in his nose, his brain, nerves in his shoulder, his ear, and his eye.  At this point, the biggest concern is the loss of sight in his eye.  Today my parents saw a retina specialist and he was not very optomoistic that they would be able to save the sight in his eye.  All of this, my grandmother passing away in February, Gracie's surgery in March and again in April and what my dad is going thru is just unreal to us.  I have described it to people like this:  I feel like I am in the center of a tornado.  Mostly I feel peace, (not always, but mostly), but chaos is going on all the way around me.  Huge, horrible, violent chaos....and I have no idea where any part of my life is going to land, and what shape it will look like when it does.  I am overwhelmed, stressed, heartbroken and scared.

I don't share these things to whine or cry about where things are, but to encourage.  Five short months into this new year, and my family's and my world has been turned upside down.  I know we are not the only people broken by life's circumstances right now.  I have friends who are broken.  I do believe, even in the hardest of times though, that there are blessings.  I also believe, that you have to look for them.  I believe what this scripture says, with all my heart.  I believe that we need to rejoice in our sufferings.  We don't have to be happy to go thru suffering, but we have to find the good in it.  I am glad that suffering produces character because I want this to all mean something.  I want the hurt to produce something more then heartache in me.  I want hope to spring out of my heart anew every single day.  I want and need to search for the blessings.  I believe that in order to survive these hurts, we have to search for the blessings, and the energy it takes to find them can be the energy it takes to get thru them.  I want to remember that when everything around me is going crazy and out of control, God can bring me peace, and hope and joy.  That I can smile and laugh in the middle of trials, and that I will be stronger in God, and stronger in character for them.  None of this makes me want to endure them, but it does make them endurable.  

From the heart of someone who is hurting, who is overwhelmed, tired and weary...I plead to those suffering with the same feelings...find your blessings.  Free first class tickets to a surgery I didn't want my baby girl to have to do is a blessing...being able to stay home with my babies because I lost my job, is a blessing...my dad being alive and having his physical and mental faculties, if not his sight, is a blessing....friends who pick up the pieces while I'm gone and help my husband take care of my son so he can get to work on time....is a blessing...a husband who loves on our son while he is in a state of confusion and depressed by all the craziness is a blessing...A friend who sits with me so I won't have to be alone during Gracie's surgery is a blessing...calls, texts and prayers from my church family is a blessing...LOOK for them.  You will need life's little blessings to get you thru life's toughest trials.  

Tonight I am praying for so many things, but also that this speaks to people.  I want people to know the kind of hope that can only come from God springing up in their hearts.  I want the blessing of character to be seen from the trials you are going thru, and pray that you feel, really feel God's love poured into YOUR heart.

Please keep my family in your prayers.  Pray for sight to be restored to my dad, healing of his retina, healing of Gracie's bone, financial provision for all of us, and blessings to be poured out on us in heaping measure.  Thank you for joining us in prayer, and listening to me vent.  Sometimes this blog is the best therapy!

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!