"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! :-)