macs are so cooty-licious

what a day.
i cant catch my breath.
i started the day yesterday with a trip to see my dr. because i was feeling SO yuck. thankfully he is aware of justins situation (because he is justins dr too) and treated me aggressively. i was super careful to not breath around justin and even though i felt like poo i disinfected our room and bathroom.....but unfortunately i was too cooty-licious :(
justin had a scheduled pulmonology appointment today with dr. N. he was immediately concerned with justins breathing and realized that he had a fever. he sent justin straight over for an xray and told him to be prepared to be admitted. he still has pending blood work, but praise jesus he got to come home! he has a steroid induced uti and stinky bronchitis. he is already on 3 antibiotics and is now on another and also an inhaler. it is getting tricky to find medications that he can take for these little bugs that do not interfere with the BIG medications he is on. dr. N wants to keep a close eye on this and will see him again friday.
just as i was getting REALLY bummed. like major bummed. i was reminded of God's precious grace. it was in His perfect timing that justin already had that appointment scheduled for today. it was more than a blessing that the chicken noodle soup fairy stopped by yesterday, the corn dog fairy came by this afternoon and the paleo lasagna fairy came by tonight. i am feeling a LOT better and was able to focus on justin this afternoon. i am still trying to get a handle on our upcoming schedule. he will need to have bloodwork done every week to monitor the prograf. it is a very dangerous drug and has to be watched closely. he will see an oncologist monday to discuss his infusion plan. God gave us another little golden nugget the other day when we realized that we will NOT have to travel to canada for his other medication! one of my very dear friends is married to a magical medicine maker (just kidding...he is a for real legit pharmacy guy) and he will be able to help justin out with that.
in our little world there is lots of yuck...but there is not so much time to feel discouraged. The Lord fills our time with greatness and blessings and answered prayers and friendships and cute little boys.
We sit around sometimes trying to figure it all out. Why is this happening? Why can't we catch a break? Why can't we have just a regular boring life? Even just a normal day?
It isnt our job to figure it out. In Job 38 God speaks to him and asks where were you when I created the foundations of the earth. And Job shuts right on up. Because where we when the Lord created the oceans and clouds and mountains and snow? Job declared he was speechless and in awe...and so are we. Job was shown so clearly the existence of God and I feel so excited that we have too. God is constantly showing himself to us through various pieces of our day. Are we listening? Are we busy talking or planning or worrying? Or are we stopping to make time to listen to his whispers? Are we rushing around busy and never sitting still....or are we stopping to see His great works all around us?
We sure do not have it all figured out. We struggle and we sin and we have crummy stinky days. But...God is still waiting there for us at the end of those days. Holding an umbrella up over our rainy day and pointing to the beautiful rainbow in the distance.

for the prayin peeps

A very close friend of ours who knows our hearts helped us come up with this little prayer request page. Many times people ask us how they SPECIFICALLY can be praying for us. Honestly our needs change from day to day and even moment to moment. We have chosen to live this journey out on the front lines and hope that others can be encouraged by our transparency and never ceasing faith.
There are people far and wide who are keeping up with the mcelhannons and crying out to our Father for us. We have friends standing in the gap on those days when we are just out of words. We are surrounded by such well intentioned people and we recognize that God has opened doors and closed doors for us recently and we could not be more grateful.
So if you are wondering how to pray for us in general...please refer back to this page :)


Many people over the months have asked how they can be praying for us, and we have done our best to communicate openly. Quite honestly we have gone through this trial very publically, which has had moments that are trying, but also moments that have absolutely overwhelmed us with God’s love, grace, mercy, and community. We thought it would be helpful to put together a short general overview of some ways that you can continue to pray alongside us as we continue to seek God’s face, and desire His hand of healing, restoration and redemption.
1) Pray for our hearts to seek God above everything else, and to grow in a love for Him (even more than our desire for healing).
2) Pray for God to heal Justin’s body cell by cell. Pray for God to work from Justin’s head all the way to his toes.
3) Pray for relationships in the house to grow and flourish even through the hard times. Pray for our marriage and for each precious second with each of our boys.
4) Pray for wisdom of those that continue to seek answers medically. We know that God can use any means to heal Justin and we attribute everything that has given us another breath all to Him!
5) Pray for wisdom for our family to know what to do each step of the way (Prov.3:5-6)
6) Pray for great memories to be made and to take advantage of every moment we have. Whether there is sickness or not, we do not want to waste a single moment God has given us.
7) Pray for rest. As much as we are going going going, there will be times that we must simply rest. Not just the physical, because we need to do that, but our rest in the One who created all this and can do whatever He wants, at any time He wants. And so we trust and rest in God.

Primarily, we desire our prayers to be rooted in the understanding of God’s supremacy in all things, and pray as Jesus taught us to in Matthew 6. Following that we offer our requests in faith knowing that God hears and redeems (Romans 8:18-30), and we trust that He will act according to His will.
In Matthew 21 and Mark 11, Jesus tells the disciples that if they “have faith and do not doubt, you will not only do what has been done to the fig tree, but even if you say to this mountain, ‘Be taken up and thrown into the sea,’ it will happen. And whatever you ask in prayer, you will receive, if you have faith”. We have great faith in who God is and what He alone can do. As we read this passage, we understand that the faith Jesus is talking about is not a faith just in faith, a strong desire, or even a belief that something miraculous will happen (that is simply a strong hope in a change of circumstance). The faith Jesus is talking about is the trust in God’s kingdom, with King Jesus ruling and reigning. This is a faith in the one who holds the circumstance and trusting that He knows everything that takes place in His kingdom and can change the outcomes of anything that takes place because He owns it all! We know that this side of heaven we will experience some of the effects of a broken world. Some of those effects King Jesus will heal and make new immediately. Some of those effects will not face full healing until King Jesus returns (and we LONG for Rev. 19:11-20), or until we join him in heaven. Regardless of which healing it is, we offer our prayers in full faith knowing it is not our (nor your) faith, in and of itself, which heals us, but rather it is the Spirit who is renewing, restoring and redeeming by the command of Almighty God. Our prayer of faith is that Jesus will use this temporary vessel in this mist of a life for his ultimate glory, which he will do because he has already redeemed and brought so much restoration to our family.
So as you pray beside us please join us with this understanding. We are not giving up, we will continue to fight, and the Lord will continue to work, and we worship and praise King Jesus for the great work he has done, is doing and will do!

AMEN!!!!

there is a plan stan

Justin is currently in Cleveland. He had some tests yesterday and met with his team of doctors today. Get ready for some information! WE HAVE A PLAN!! Praise our Father for his always perfect timing and his strength during the time we have been waiting.

The infection in Justins lungs is minimal enough to now start new treatment. One of the biggest concerns for his lungs was that the doctors were not able to tell if it was the scleroderma or the infection that was causing so much of the haziness in his lungs. Hallelujah that is was INFECTION! Because HELLO that is treatable and scleroderma is not. He still has quite a bit of scarring in the lungs...but the doctor was very pleased that it had NOT progressed. Ready for the plan? Well here it is:

He will do monthly IVIG infusions. This is an in patient (meaning he will need to be admitted for treatment each month) procedure that replaces antibodies and will help neutralize his immune system. He will need to do this forever.

He has now been cleared for the Prograf. We have been talking about this one for awhile now. This is the organ anti rejection medication that will help his body from being so mean to itself. It is an immunosupressant so we need to remain cautious and on guard with his health.

This combination of medications will hopefully allow the doctors to begin weaning him off this high steroid doses faster. The side effects are getting the best of him...so weaning off will be a huge help. There is concern with his bone density and several GI procedures coming up. He has been on osteoporosis medication since day one of all this...so we are going to be exploring options with something that will be more helpful. He will possibly have a stint placed in his stomach to help out with all the esophageal mumbo jumbo and he has some other scope type things to do as well.

He needs a medication that is only available in Canada. His Rheumatologist STRONGLY suggests that he get on this medication right away. He has written him a prescription and the rest is up to us. So...maybe we are heading to Canada! Yikes! Is this really our life?? Yup.

He will continue chemo treatments every six months. So he will be up for his next treatment in December. Can you believe that this whole story has only taken place in 4 months? Unimaginable.

He will also need to return to Cleveland in December so the doctors can monitor the prograf.

I think I remembered everything. What a DAY! Whew. I am pooped and I wasnt even there!

This is the first non-discouraging news we have had in months. I cant really say its super encouraging...I mean thats a lot of business for my cute 28 year old husband to have going on in his body BUT the bottom line is the Lord is present and we are thankful.

Please pray that he can come home soon. His flight has been pushed back twice now due to weather.

Thank you to our prayer warriors who have stood solidly by our side. Thank you for those who are there right we need them and for those who wait in the wings praying consistently for us. I have been blessed with the best friends a girl could ever ask for. I feel like I should pinch myself...how did I get so lucky?

my date with jesus

Friday we were given the opportunity to have a whole 24 hours together. No work...quiet time without kids....fun with kids....etc. Some sweet friends got us a night at a beautiful hotel down on the river walk and some other friends got us a gift card for a super yummy dinner. The plan was that we would spend the day together Friday in Boerne just relaxing, then we would take the boys to their school festival (huge deal because justin is never able to attend these types of things), then we would head to the restaurant for our romantic dinner and then to our even more romantic hotel....we were going to wake up saturday morning and just spend time together on the river walk (honey moon style) until we headed to church for side by side.

so thursday i said (out loud) "i am going to go into this weekend with NO expectations"...

I really thought I would be OK with whatever curveball came our way because I said "NO expectations" you know...i was thinking if justin was tired we would just relax more or if he started having pain we would just sit down or if he wanted to watch tv in the hotel room then that would all be fine.

I was so proud of myself for preparing myself for ANY situation. I was patting myself on the back in advance for being such a sweet and supportive wife.

HA to me.

A few hours after we started our sweet date day on Friday...Justin got really sick. Like REALLY sick. Long story short...we spent the afternoon in the emergency room. I took the boys to their little festival by myself (well not totally by myself...our sweet katelyn joined us)...while justin got checked in and then I met him back there. After four hours of getting him back to "normal" we were able to leave. I was so crushed. My heart felt so broken about our day. This was NOT what we had planned. This was not how it was supposed to happen. I was so disappointed as we finally headed out to the hotel after 8pm. The next morning I woke up and decided that we could surely make the best of the rest of this. We had until 2:30pm to just hang out and be together. But...Justin slept until 1. I found myself getting angry as I sat in the dark hotel room alone in the quiet.

BUT...then I went outside and gave the Lord some time that he had so thoughtfully planned right out for me. I was not doing a good job at all. I had LOTS of expectations of this little 24 hour getaway. Lots. I was expecting Justin to fill this time up and make it perfect for us. I was depending on him to make me happy. I needed him to be awake and up and walking and talking for my day to be good. How opposite of right could i go?? I was not depending on God one tiny little bit.

How humbling it was for me to sit there and say "ok god...i was trusting in you to make this time be BLESSED and good....oh wait...no i wasnt"....sorry God. I was sitting there sad and crying and looking at my peacefully resting husband and thinking how badly i wanted a normal day with him. an easy breezy carefree day with him. i was single handedly ruining this precious quiet time that the Lord had gifted me with...because I was too busy thinking about what it COULD have been.

What a GREAT BIG GIANT FAT blessing that Justin was ASLEEP!!! Hello!!! HALLELUJAH! This man is exhausted and stays up for days at a time. What a burden it must be for him to carry the weight of my happiness on his shoulders? Yuck. How very selfish of me. The Lord is begging for those burdens and I rudely want them all to myself. I thought I had that all figured out. I thought I was waking up each day and putting my sadness at His feet and walking around with my head held high...but I have only been doing that half heartedly. It is truly a GREAT challenge to do that WHOLE heartedly. I do not think I will ever have that totally figured out...but I sure am going to give it my all.

If I could trust in Him more....and give Him more...and seek Him more...than surely life would be better right? No...because that is not His promise to us. We dont get a gold star for each time we submit. We dont get an extra jewel on our crown for each time we pray. We simply get his love and THAT should be enough. Think about how much you love your children and spouse...and multiply that by a gazillion. THAT is how much our Father loves us. No matter what. What can we do to be more deserving of that? How can we honor that gift?

I thought I had it all figured out. I thought I was just good to go in that department.

I am so excited for this new opportunity to TRUST. And SUBMIT. And LOVE in the way we were born to love. I have a new picture of what "expectations" look like. I have a renewed spirit living in me today because God gave me an opportunity to seek him in the quiet and hear a message he so desperately wanted me to hear. Thank you Lord for your great love. No love is greater. Thanks for the reminder :)

The End.

PS: pray for justins breathing...glucose...prescriptions...and sleep.

are you still praying?

here is what has been happening around here:

1. i got to go on my first round top trip with my friend mandy! we had a great time talking and talking and talking and we even made some time for shopping :) we both found some great stuff!

2. bryce turned 6! more on that later.

3. justin saw a local pulmonologist. his breathing test results were not favorable, but justin was pleased with the doctors honesty and interest in his case. this new doctor feels very confident that the scarring in his lungs is being caused more by the scleroderma than the fungus. this is not good news.

4. bryce did GREAT in his bike rodeo! the babies had a great time cheering on him and McCoy! the Aue Gator was even there which Brody thought was AWESOME.

5. Our renters moved out of our Houston house. :(

6. pop pop is here!!! bryce asked to go camping for his birthday...so my dad came in to take him out to the ranch! i stayed over at the river house with the babies and some friends....and bryce had a blast!

7. justin will see a new dr. tuesday and leaves for cleveland in 15 days. he is still throwing up most nights and still experiencing negative side effects from the medication. he has tried to lessen his dosage of the steroids and the leg pain has come back.

8. brody LOVES school. he loves his ppcd class so so so much and loves coming to preschool a two days a week also. his speech has improved so much in just a few short weeks. i am so proud of him. he thinks he is a big fancy boy now...so he has been getting out of his crib :( bummer.

9. we are still trucking along on the makers diet! we are on day 27 and feeling great! justin has found some things on the diet that he never would have eaten before...he is now learning what he can and cannot eat and at what parts of the day he can eat. he cannot eat past 5pm and has to be very careful on what he chooses for the last meal of the day.

10. thanks to some SERIOUSLY incredible people we are going to get to have a date night friday. we have realized that i will not be able to join justin in cleveland and we desperately need some time together. most of our time is spent talking about doctors appointments, insurance, medical bills and his current symptoms. we are feeling super weary.

we are leaning on God so hard right now and He is holding us up. He has provided us with a support system that just cannot be beat. i have begged for restoration and clarity with many things recently and as always....my God is faithful and He provides.

please never stop praying for us.

friends and such

I have had a lot of time to think recently about what the word "friend" means to me. I have been blessed with so many amazing friendships. I truly feel gifted with the people in my life. I have had the opportunity recently to really step back and evaluate my life. We have forever changed as a family unit. Justin is very ill. He just honestly may not live as long as we thought he would. This really puts thing into a whole new perspective. We will never ever stop praying for a miracle...but sometimes reality just is what it is. "Pettiness" is just not an option for us right now. Keeping score is not an option. We just have only so much to give at this time.

The Lord prompts us to value our friends needs above our own (like Jesus did). However, He does not ask us to keep a tally of this. If someone makes a monetary donation or if someone sends an encouraging text...these are equal in God's eyes. But only if they come from a place of true love. We all have different abilities and gifts in which we are able to bless others. I feel that if we spend our time seeking ways to serve HIM...this will come so simply. A true friend is quick to ask for forgiveness...and also quick to forgive.

What does this all mean for us right now?

It means that we see so many incredible people that come whole heartedly to us with their hearts and arms open. But it also means that we see those who come with a possibly different "agenda." Is it our responsibility to judge them? ABSOLUTELY NOT!

Do the McElhannon's make mistakes? Heck yeah! Do we sin? Sadly so. Do we forget to keep our eyes on Him sometimes? Yup. Do we have it all together? Not even a bit.

Do we have people that love us anyways? Oh yes we do. And that is truly one HUGE blessing from the Lord. We count each friend as a specific gift from God. This includes the friends that we talk to or text everday. This includes the friends that we meet for dinner weekly or visit with in our living room. This includes the friends that we just bump into at church or HEB. This includes the friends that we don't talk to for months on end, but who pray for us daily. This includes the friends who we have let down or the ones that have let us down. This includes the friends who see our broken parts and do not try to fix us...but rather just love us for who we are and who we are striving to be. We have true brothers and sisters in Christ and we will NEVER stop thanking our God for them.

In past seasons of our lives we have made it a priority to do good works. We have tried to make those works about Him and not the outcome...but at times we failed. We are not perfect and we never will be. We have lost focus at times and we have stumbled and we have let others down. But the Lord just kept loving us. He wont stop either. He doesnt care how many facebook friends we have or how many texts we get a day. He cares about our hearts.

Our hearts have changed so much and we give him every bit of the glory. Most of our friends have jumped on the ship and are "on board" with us and our new journey. Some are not...and that is OK. Many parts of our lives right now are flat out unbearable....and God has placed people in our lives that help us get through it. They laugh with us cry with us sing with us pray with us and walk alongside us.

Now onto more serious business. Dr. F has discovered that Justin has bacterial overgrowth which is causing new and frustrating complications for him. He is already on some pretty hardcore antibiotics for his fungal issues etc. and now he has had to add a FOURTH antibiotic to his regimen. He is having some blood sugar issues that are being managed by his new diet...but he could use some prayers that this does not worsen. We have a tentative appointment with a pulmonologist (tentative only because we are still researching other drs) next Wednesday. Thats all for today.

Brody

Our little tiny precious angel boy is THREE. I do not know how this happened. Just yesterday we were caught in a storm delivering this miracle during what we thought was the most difficult time of our lives. We were so scared, yet never closer. We thank God daily for Brody and the amazing things that his perfect little presence have brought to our marriage and family.

It is amazing to look back at blogs I wrote during his first year. We truly were floating on God's grace during that time. We thought that life was hard...but we can now look back and see how easy He really made it. Loving Brody and taking care of Brody has been a gift. We have never looked back and thought "geeze God why did you put us through that?"....we look back and say 'WOW...thank you Lord for Brody!!"
I cannot fathom the idea right now that we will be looking back in three years and thanking God for our current storm. But...I sure didnt think that three years ago either. God is incredible. Huge and sovereign and mighty. His plan is big big big.
I look back at the lives that Brody has touched. The people who love him. The experiences he has endured. And his precious smile. I am blown away by God's gifts. I am looking forward to new opportunities to praise Him and thank Him.
I remember sitting in the hospital with Brody when he was 6 months old. He was so very sick and I had just lost my mom. I remember asking God why life had to be so hard. It all seemed so unfair. I am still hurting and I still feel like it is unfair...but He has gifted me with peace and provision. The Lord has shown me through many experiences that He will never leave my side and that he will fill my heart...but only when I ask Him to.

I am comforted now in in knowing that in each storm there is always a rainbow...and Brody's storm left us with this smile. And it really doesnt get much better than that.

So happy 3rd birthday to the best gift that just keeps on giving!

Our little muffin baby Brody Todey!!

Here are some pictures from Brody and Sam's 3rd Birthday Tball Bash!

websters

What is the definition of a McElhannon? We are God fearing, BOLD, grateful, seeking, FUN, chatty, kinda maybe a little crazy and caring. Nowhere in that description does it say SICK. Justin may be sick...but that is NOT what defines him. The definition of Justin is ambitious, hard working, really HOT, excited and hungry. Our lives are forever changed by his medical situation and diagnosis' BUT we will not let that be what defines him. Just like Brody having downs syndrome is NOT what defines him. Him having DS is the least interesting thing about it. Its an important part of his life and it shapes some things about him...but its not WHO he is. We have to wake up each morning and remember that NONE of us have a prognosis. The Lord has all of that already mapped out. And we just flat out do not get to know. He promises to love us and never leave our sides. That is good enough for us.

Please read the following blog written by my dear friend Jason Carletinni. It is a great reminder of how we need to live each day. I am thankful and continuously seeking His word. We are growing every day around the Mac Shack...and we are excited about what lies ahead.


Do You Really Fear The Lord?
“The Fear of the Lord is the beginning of knowledge, fools despise wisdom and instruction” Proverbs 1:7

I have read this passage and heard it taught on numerous times, shoot, I have taught on it numerous times. Most of the time we approach it as, that when we have a “fear” or “awe” of who God is then it is the beginning of knowledge because we begin to listen to God and respond as He instructs. This is completely true and in no way would I argue with that interpretation or application. However, many times when we approach or teach the scriptures we only get a part of the story. This has happened for centuries and leads people to be disillusioned with the scriptures and want more, want deeper, etc. Most of the time what people are looking for is the fullness of the scripture or that part they know is there but that too many times we are afraid to dig into. I believe this idea exist in the way we typically approach the “fear of the Lord” and how it leads to knowledge. As result many times it leaves us more like fools even though we may be truly in awe of God. Hang with me for a second and see if this begins to make sense.

You see to truly approach God as described in the scriptures naturally produces an amount of fear or awe for us because we are forced to encounter the one true supreme entity or being. As described in the scriptures there is nothing that holds power over God in any way, he is all knowing, all powerful, outside of time and space. How we normally take the fear of the Lord is that I better listen to this God and do as he says so that he will be pleased with me, reward me, etc. Again, I am all about pursuing obedience to God as result of whom He is and that He, in Jesus, sacrificed for me to be able to know him. I want to please him because He has loved me so graciously.

What if there is another aspect to this that would change the way we live, especially in our American Christian Culture? What if the fear of the Lord also entailed that God can do anything and allow us to go through anything? I think for the most part we,me included, really struggle with this idea. If I love God, and follow him, shouldn’t He make my life more convenient, easier, with more toys I like, more time to play, healthier, wealthier, and wiser? Well the reality is although God promises to provide for our needs as we seek first God’s kingdom and his righteousness (Matt. 6:33) he does not define that in the context as what is most comfortable to us American Christians. In fact, the New Testament is filled with promises of persecution and suffering for surrendering to and following Jesus. We see it exemplified in the apostles, the prophets, the Biblical Heroes throughout scripture. What if the fear of the lord producing knowledge has as much or more to with the reality that God does not owe us our preferred level of comfort? How does the idea that you are not entitled to anything for those who believe beyond His presence, persecution, suffering, and growth that is produced from it? After all most of Jesus’ best friends died horrible martyrs’ deaths.

What then if the beginning of knowledge comes when we fear God enough to not live as though we are entitled to time, wealth, processions, and favor from people? Allow me to indulge you in a real-life applicable example that I am currently going through. I currently have the privilege of serving as a church planter/pastor with The Crossing in Bulverde/Spring Branch/Canyon Lake, TX. It has been an amazing journey and I have been privileged to serve on staff full-time as we have launch The Crossing that God lead us to step out in faith and plant. God is doing some amazing things, we have seen families transformed, people surrender to Jesus, people follow Jesus, families serve and grow. It has been awesome. At the same time in the very immediate future I may need to find a job because the resources (outside of God providing a miracle) are not there or projected to be there for me to remain on staff full-time. How I fear the Lord in this situation is to seek him earnestly in prayer knowing that all is at his disposal, to continue to pursue the kingdom, it’s growth, be transformed by God’s righteousness through his grace, and understand that God does not owe me anything.

You see I could be angry and frustrated with God, “God we have stepped out in faith, we are pursuing your kingdom and a part of its growth, why haven’t you provided.” That would be the typical response whether we face a job loss/change, sickness, souring of relationships, natural disasters, etc. This is how I think this all comes together though. To truly fear God is to know that he can take away all of our comforts in the blink of an eye, and instead to chose how I will live today. The knowledge we are able to take away from fearing God is that we should not be wasting time, that we are not victims, that we are not entitled, but that we have graciously been given this moment and these resources. I trust God will provide for my needs and I can find peace in that, but my needs may not be defined as liberally as I have defined them, just look around to the rest of the world.

Today, you and I have the choice, will you fear that God is truly God and the reality of what he promises in this life? Will you allow that reality, true reality, to produce in you a Godly understanding that leads you to respond with Godly wisdom today? Will you pursue the kingdom and his righteousness today knowing that the comfort you have today may not be available tomorrow? We all face life’s challenges and we all must decide, do I truly fear the Lord. When we do, respond with urgency, passion, truth, and grace for his kingdom’s sake and growing in his righteousness. Do not allow the circumstances of your life to push away from God, to make you a fool, but live in God’s reality and experience God’s best. Only go into knowing full well, God’s best typically comes through his truth, his grace, and the experiences he promises of persecution and suffering. Fear the God of the universe today and recognize him as whom he is, not one indebted to you, but that you are the one indebted to him because of his great love.

catch up

so what is happening over here? oh.so.much. here goes.

- justin is HOME. here is the rundown. he NEEDED to be seen by this specialist in Cleveland...most importantly so he could be treated by him long term...but also to set up a plan to get rid of the asperiga-whatever. unfortunately, because of the scleroderma...they cannot treat it as aggressively as they would like. these two diseases have treatments that do not get along with each other. that is a bummer. BUT, they are trying a 6 week oral medication and we will just unceasingly pray that it does its duty.

- me and brax were a little crummy at the beginning of the week...so justin was not able to immediately come to our house when he was sent home from cleveland :( even the tiniest little bug could be bad news bears for him. SO...he stayed with chris and brit and we finally got to have him back tonight. i am VERY thankful to sleep next to him tonight!!!

- we are praying for rain. the fires are so scary and so very sad and getting WAY close to home. some of our dearest friends had fires just miles from their homes yesterday. the air is now very dangerous for justin.

- preschool has started and is in full swing! i am SO loving my sweet little class!! brody and brax are doing so well! brax even slept on his little nap mat today!!! i just cannot help but peek on them each a few times during the day. it makes me all jello-y to see them having so much fun with their friends.

- makers diet is going GOOD! justin is already feeling the benefits. we have decided that we could absolutely NOT do this alone...and are SO thankful for those who are rallying around us. we are posting recipes, shopping lists and meal ideas so keep checking the blog! www.JustinIsHungry.blogspot.com

- we will go to cleveland on october 17th for follow up appointments and the next step in the gameplan. he will see all three of his doctors then.

- we are still awaiting biopsy results from all the GI stuff and awaiting an appointment for the liver specialist.

- BRODY is starting big school on MONDAY! he will go to PPCD mon-thurs from 7:45am -10:45am. he qualified due to his speech impairment and i have such a peace about him going. i had officially closed the door on that...and the Lord just swung it back open and we are pumped! he will still continue to go to FBC...but just the second half of the day on t/th.

- so...to recap...lots of things are still yucky. BUT too many things are GOOD! God is showing up in mighty ways are we are GRATEFUL! the Lord is filling us up...and we are just going to keep on asking Him to do so!

life this weekend

i wish i could could have pressed the pause button this morning. we had such a great weekend....and now justin is a lot of hours away in stinky cleveland.

justin has his appointment tomorrow at 10am. please pray for doctors wisdom, pray that the "game plan" will not include him staying for too long, pray this week will not drag by.

many of you know that we are going on a "diet"...but it is not really a diet...its a lifestyle change. it will nourish our bodies in the way God intended for them to be nourished and it will bless all of those participating in such incredible ways. i just know it. its a 40 day program that will leave you cleansed and with a whole new outlook on what you put in your body. thank you so much for those that are going to "suffer" with us through this. i KNOW that many of justins symptoms will vanish after he starts this. he can't do it alone...so if you havent jumped on the bandwagon...then get on NOW! check out: http://justinishungry.blogspot.com/

also...please pray for me and the boys as we start work/preschool tomorrow. its going to be an early morning and a long day for all of us...but they will have so much fun with their amazing teachers and really cute friends. i cannot wait to be with my new kiddos tomorrow! its gonna be one crazy day! i am so thankful for all the support we have right now. i dont know what i would do without my friends. justin is not here with me...but i am SO not alone. i have such a great God who wraps me up tightly and his children who live daily as His hands and feet and then these three beautiful little boys that remind me that miracles happen EVERY day.

here is our weekend in pictures...

bryce and i were excited to go on a fun date with some crazy fun friends on saturday night. he needed that special time for sure...and he had a BLAST! i hope i dont get kicked out of my sunday school class for these pictures (they are like ALL aggies lol).

how incredible is this picture? he makes my heart so warm and cozy.

i love me some CW!!

on the way home...

justin and i decided that we would go ahead and celebrate the big boys birthdays. it is heartbreaking to think that justin may miss these two special days that are coming up. we had some yummy cake and justin gave each of the boys a present. bryce got some cool shirts and brody got an elmo cell phone. they were so excited and it was truly a special little moment.

brody LOVED it when we sang to him!!!!

mops parade!

yuck city

so...many of you have heard that we have some things going on at our house. justin received a phone call from his doctors in cleveland on friday afternoon. they have received his latest blood work and results from his blood cultures. it has been discovered that he now has what is called aspergillosis...which is spreading. they want him back in cleveland immediately for treatment with a plan to stay. we are praising god's holy name because the doctors explained that with this new discovery...if he were to follow next months treatment plan (scheduled for oct. 18th in cleveland) it could have been immediately fatal. we are saddened that we now have a NEW disease to worry about (quick recap....scleroderma, polymyositis, interstitial lung disease, and all the new GI issues)....but we are glad that it was caught. for now there is no determined treatment plan. justin is flying to cleveland monday morning. the boys and i will stay behind until there is a game plan made.

friday afternoon was hectic to say the least. we were trying to get medical records to cleveland at 4pm before a holiday weekend. doctors were calling left and right and emotions were at an ALL TIME high.

they will do more lung biopsies and was told to be prepared for long term IV treatments. we are also still awaiting biopsy results on his esophagus and small intestine. please pray for protection of our minds and hearts as we are continuously on information overload.

we refuse to panic. we are scared and majorly frustrated...but we will continue to lay these burdens at His feet. we have heard bad news after more bad news on top of more bad news for 3 months straight. enough is enough :(

there are several families that are going to join us in the makers diet. we feel that in addition to this lifestyle being a way of fasting...it has been proven to help tremendously with many of the symptoms justin has. if you are interested in joining us...please let us know and i will direct you to the private blog we have set up where we will explain the diet and share recipes etc. we have someone that is helping coordinate meals for justin there in cleveland (amazing!) so that he can eat in a healthy way and hopefully feel some relief. we start tuesday...please pray about joining us.

they boys and i walked in the kendall county labor day parade this morning for Boerne MOPS. thanks to some great gals who did some hard work...our little float won 3rd place!! it was HOT but we all had fun. bryce and i are headed for a date tonight with some special friends and we got to spend some time with Justins parents yesterday and today too! we want to keep things as "normal" as possible for the boys. bryce has been asking more and more questions...and was so very sad to hear that justin is headed back to cleveland. pray for his little heart.

tuesday

Thank you all for patiently waiting for this update. I wanted to text each of you individually to give you an update....but the procedure took and hour and a half longer than it was supposed to and we had to rush to get the babies and then i had to rush to bryces open house tonight. thank you so much for the amazing ladies that sat with me today...that waiting room has surely never heard so many giggles!!

so...here is the scoop:

- his intestines are slowing down

- his lower sphincter is not working well

- there are abnormal contractions taking place along the lower esophagus

- the lower small intestine/bowel area is not functioning well

Now...what does this mean? Well more tests of course. He he will have a catheter placed in his esophagus to test motility and there were quite a few biopsys taken from each area today. We hope to hear back from those ASAP...but we are not going to be holding our breath.

They basically said he could expect to continuously regurgitate bile...he possibly (in addition to everything else) has celiac disease...he has bacteria growing in his stomach because of how long it takes for him to digest....he will begin probiotics to help with that....and so on blah blah blah.

The doctor pretty much said this is just all part of the disease he has (scleroderma...which sure is progressing faster than we EVER thought). Its not something that they can fix. He can manage some of the symptoms by watching what he eats...and thats about that.

We will not stop fighting. We will not stop praying. We will not lose faith.

quickie

Here is a quick medical update.

Justin had two appointments on Friday. The first was with a gastroenterologist. They discovered that Justin's esophagus is staying up all the time (we already knew this part), but that now the bottom of his esophagus is shrinking and hardening. This is causing many problems for his entire tummy system. Which is referred to that as guts when you are a man though :) The scan showed that there are possibly several things going on in there including the possibility of parts of his intestines being paralyzed. The only way to find out what all is going on and what can be done about it is to go in. Yup. All the way in :( Tuesday afternoon Justin will be put under for an endoscopy and colonoscopy. He is an "at risk" patient so I will stay at the hospital during the procedure. Please cover him in prayer on Tuesday. You may also give him a little shout out on Monday while he is FASTING!!! I am already scared about that!

Speaking of fasting...along with these gut issues comes a new diet. He is to follow a low fiber and low fat diet. For those of you bringing us meals...thank you SO much! It is hard for us to have to be specific because we have really been enjoying all the yummy things that have been brought to us. It is truly a blessing to have just one less thing to worry about in the evenings.

His next appointment was with his regular rheumatologist, Dr F. He found that unfortunately the scarring in Justin's lungs has spread north. This was the first time that anything has been detected in the top of his lungs. He is currently researching a pulmonologist. We need one that is familiar with autoimmune diseases. Dr. F is working with the UT Health and Science Center to find the best local dr.

There is quite a bit of hardening and pain happening in Justin's body right now. He is going to do his best to stick to (by drs request) a maximum of 40 hour work week. Big ambitious pants has a hard time with that :)

Please pray for peace and rest. We have stepped up the game in prayer...but that is a post for another day :) Thank you all for loving us...and PS: We survived the first week of kindergarten!! I have started back to "work"....which is hardly considered a job because its 2 days a week and I get to love on sweet 4 year olds and hang out with my best friends all day...and MOPS leadership duties are in FULL swing....so keep those prayers up and we will keep our chins up!!

xoxo

the macs

unshakable faith

A very dear friend reminded me of the story of Job. Job was tested many many times and remained a strong man that honored and praised God no matter what. He never lost sight of who his God was. And God brings all things that are of GOOD. His friends told him to repent...but he knew the truth in his heart and did not let satan get a hold on him.

We are not Job....we are not a wealthy family with 7 sons and 3 daughters. BUT we are children of God. We we were created in His perfect vision. Justin, myself, Bryce, Brody and Braxton are here on earth JUST as HE wanted us to be.

Job showed the true meaning of "long suffering" ...he showed that sometimes there is sickness to later glorify the Lord.

I dont know if this is relative to Justin's story. I may not ever know. I dont even deserve to know. But it reminds me to be hopeful. It reminds me that there are elements to Justin's life and his health that can truly serve a greater good. We will NOT stop fighting and we will NOT stop praising Him and we will NOT stop rallying in prayer. But we WILL stop demanding answers and we WILL stop feeling deserving of knowing every step of His plan and we WILL stop letting satan steal from the many other blessings around us.

I agree today that I will try my very best to stop viewing our trials as burdens, but as bigger ways to glorify Him. Bigger and better ways to show others how redeeming faithfulness can be. We are called for a bigger purpose. Our story shows great trials over the past 5 years...and we have never looked back and said "oh gosh...we were so alone" Never. Not once. We always knew He was walking with us. Him and a big ol' bunch of His precious children.

Justins life right now is scary. His prognosis is awful and his symptoms worsen each day. Saying that I feel discouraged is a huge understatement. But each day that he lives is another day for him to rely on the Lord and thank him for each blessing.

"Wait on the LORD; be of good courage, and He shall strengthen your heart; wait, I say, on the LORD!" (Psalm 27:14).

it happened...

Today came. It really did. Bryce went to kindergarten.

ALL DAY.

We had one wild and crazy summer. It is not quite how we thought it would go...but His plans for us are bigger than we will ever understand. We had a big awesome last week...a friend took us to fiesta texas, we swam lots with the fickeys, we played with fun friends, we ate pizza under sheet tents, celebrated the end of summer with sunday school friends and spent as much time with good friends as we could possibly fit in!! Summer of 2011...you were a wacky one...but we made the best out of you!!

I just cannot stop thinking about the fact that Bryce is really BIG enough for school. I remember the moment he was born...I made the nurses immediately put a hat on him because his head was shaped funny :) He is been my independent little fire cracker...and our house is going to be missing some spark during the day!

He was SO very excited about today. He could absolutely NOT wait.

I only cried like five times...and I did NOT cry in the classroom. So hooray for me.

good morning pancake breakfast!!

Mommy and Bryce walked...while Daddy followed in his truck :)

they talked the whole way!

this is bryce's precious teacher!!

Thank you all for your sweet prayers on this BIG day. It is going to take some getting used to for sure!! Baby brothers were sure excited when they woke up from nap and bubby was home!!

Now onto the dumb news. Justin has not been feeling very well. He is not sleeping and is having some pretty yucky esophagus issues. We are looking into getting him into a gastroenterologist asap. He is experiencing skin tightening due to the scleroderma. It is very frustrating and scary. He has been working a lot and really enjoying that....it really helps him to forget his worries and focus on other things. We are battling the insurance company daily. They just do not want to cover anything anymore without a fight. Please pray for comfort and sleep for justin. Please lift him up each night before you go to sleep. It is agony watching him lay there miserably awake and hurting all night. It looks like we are going to be on the phone over the next few days finding the best local doctors. God has got it handled...please pray that we are obedient to where he wants justin to be and do not make emotional decisions. Please pray that no matter what we are doing...that we will stop and listen for His guidance.

other news

So recently the focus has been all on Justin...and well...we DO have other family members. And they are pretty cute!

Braxton is just our little stink in the pants. He is a really nice little bulldozer. Seriously. He is very sweet and precious...but could be a linebacker for sure. We are excited for him to start preschool in a few weeks...he will have our beloved Kathy. Nobody tell Brody...he doesnt know yet :) He is talking up a storm and he really cracks himself up. I am jello in his hands.

Brody is still trucking along with the potty training. He does it when he wants to...and doesnt when he doesnt want to. :) He will be going into the 3 year old program next year with Kelly (who was Bryces first teacher at FBC!). So exciting for all of us. His language and communication skills are developing more and more. He makes us proud! Please begin to pray for the ARD that he has at Aue on Sept. 7th. We feel that God has spoken clearly to us on where Brody is supposed to be next year and we are looking forward to setting up speech therapy through the school and taking him to preschool with his baby brother on Tues/Thurs.

Now....onto the BIG news. Bryce got to meet his kindergarten teacher last night. It was so cute to see him so excited and in a brand new element. He was thrilled. He can hardly even wait. I am going to miss having him with me all the time...but I know it is ready for him to spread his little wings. He is bustin outta this joint!! I have only cried about it 5 times. I am very proud of that.

We now take a moment of silence for rocky the beta fish. He has gone to heaven after a fabulous 21 month stay here at the mac shack. We brought him home when we brought Braxton home....I MEAN....Santa brought him here the next morning!!! Silly me.

Bryce found him yesterday and said "oh no...rocky's life went to heaven and he left his body in my room" We prayed for him and then daddy took his body outside to do whatever it is daddys do with fish bodies with no life.

Justin has been working. He still feels pretty awful...his medication side effects are terrible...but it makes him feel good to work. He is not sleeping and the "reflux" is unbelievable...but his muscles dont hurt and he is not swollen. He is being very cautious with germs...he sanitizes and showers a LOT and even wears his mask sometimes. As flu/sick season approaches....we will have to be even MORE cautious...but we will deal with that as it comes. We continue to be encouraged each day as people love on us and reach out to us. The support is unbelievingly overwhelming and so so appreciated. He will see a liver doctor in a couple of weeks for testing and we are currently looking for the best local pulmonolgist to be proactive in his plan here...since he can obviously not go to Cleveland every month for check ups.

We are learning everyday how to deal with this. We sure do NOT have it all figured out...its a constant work in progress....and we are OK with that.

BIG prayers for our BIG boy on his BIG day Monday!! Aue Elementary....here we come!!!

learning to deal

The day has arrived where this rock is starting to shiver. This past week has been one of the most emotional for me. I am facing some major struggles with doctor facts vs. biblical facts. Justin has been extremely optimistic. His strength and stamina is wearing me out! I remain very confident that our God will heal Justin. But I have been facing some scary truths....God promises us eternal life and healing...but he does NOT promise us tomorrow on earth. I have written this blog post several times...deleted it and then come back to it. There are some harsh realities to face...but I still go to bed each night with the comfort that no matter what any doctor says...He will never leave my side. I cannot always pretend like things are sunshine and roses...and God doesnt expect that from me. What a relief that is. It is comforting to know that He loves me just the same when I am raw and angry as when I "have it all together." Our lives are forever changed. I will continue to wake up each day and make the decision to live for Him...glorify Him...honor Him. BUT I am freed in knowing that when it takes me a little longer to get to that place of "light"...well...He forgives me. He understands. There will be days of suffering and heart ache and pain (for me emotionally and Justin physically). There will be days that feel "normal" and days that we are lost. All of that is OK. God never said he was going to tie us all up with a little bow and grant us the perfect and most painless life. We are blessed to the rim...overflowing actually! Just not necessarily in the form of Justins health. And that is getting easier to accept each day.

The Lord WILL heal Justin. While he is here on earth would sure be more convenient for me :) But that may just not be His plan...and who the heck am I to disagree with His plan? I am sad and a little weary...but also very thankful. Things sure could be worse.

By His stripes we are healed. And we are. Jesus didn't die to heal us...he died to set us free from the domination of sin. Salvation is good enough for me!!

More health updates later...nothing has really changed. But my heart is changing...and I think its good. I am definitely struggling...but it is opening my eyes to truths that are more freeing than I could ever explain.

I appreciate each of your prayers during this transitional time!!

thank you

where 2 or more are present...He is there. what about where there are 500 more are present?! tonight was the most spectacular showing of Gods love I have ever seen. what an outpouring of His love shown in the work and love put into tonights pancake supper. i know that weeks of planning went into this event. there were 100 silent auction items, 500 people were served DELICIOUS pancakes, some REALLY cute tshirts, a super fun bouncy house and the most amazing group of people serving in this whole wide universe. i have some of the most amazing friends that ever existed. it was overwhelming in so many ways. our community is truly awesome. Justin had a poor report about his lungs about 30 minutes prior to the pancake supper...but God showed us through our friends (and total strangers) that He loves us so mightily and NO diagnosis can take that away. My boys had such a fun time. It is so special to see how loved they are in our church home. I looked around all night and each time there was someone playing with them and loving on them in the most incredible way. I only wish we could have walked around and spoke to each person. I saw so many dear friends....truck loads of them...that I didnt even get to hug or thank. What a whirlwind. The women that organized this event are truly my most precious friends. I just dont know what I would do without them. Each time I looked around I saw another dear friend working hard. I even saw some pretty awesome gals possibly fighting over some super cool auction items lol. The intimidating stack of medical bills that we are afraid to look at does not seem so daunting anymore. Thanks to the outpouring of love from His people...we can look to the future and focus less on dollar signs and more on getting the most handsome man in the world BETTER!

The current health update is nothing exciting. There continues to be a major concern for his lungs. He will go back to Cleveland in October to discuss new treatments (possible prograf for organs)...and until then we will pray that his lungs will stop collecting scar tissue. His muscle enzyme levels are creeping back up and he is fighting painful viral infections. His medicine count just keeps going up and up. We rest all of the burdens at Jesus' feet tonight and rest thankful for his peace and grace and love which was shown to us in so many ways this very evening.

best day ever

so yesterday topped the charts on "yuck days"....many many people saw and heard my tears yesterday. thank you sweet angels who lifted me up :) you all just know exactly who you are! i knew today was going to be better...i mean for real...how could it be worse?! but i really just had a gut feeling it was going to be GOOD. i was right. la te da for me! justin called this morning and said he was getting discharged! they came back with the biopsy results and it was indeed a fungal infection. this was not our first choice...but it sure wasnt the last! we took it as a praise. the heavy heavy antibiotics that he had been on for 6 days had really done some good work. he was prescribed a new fancy oral (and by fancy i mean that it cost the same as a pony) antibiotic and told he could finish treatment at home!!! he was over the moon to call with this news and HE was more than thrilled to send me on to nashville! i was hesitant because i want to soak up every minute of him that i can...but its important to him that i get this "break" and get filled up in worship and fellowship...and i am pretty excited :) he is such a selfless man. i am truly blessed! he told me that he had prayed and prayed that this would work out. he really wanted me to go and he really wants to get back to work (i know...he is crazy). we truly feel like this is a testament to yesterdays obedience. justin will not have to wear a mask all the time...just in very high traffic places. he will just need to be more cautious about germs and debri.

so...they will not start the treatment programs (possible prograf etc) for scleroderma and polymyositis until his lungs have straightened themselves up a bit. the interstitial lung disease needs to get a grip and MOVE ON! he will need to go back to cleveland in october to hopefully get that going! we will pray that it can push those other dumb diseases into remission!!

bryce and i got to have a very fun date today! we got his backpack for kindergarten and had a fun date with special friends to see smurfs! AND he is getting to live it up this weekend with his friend davis at the lake!! lucky guy :)

love you all and keep bringing on those prayers!!

yucky tuesday

Nothing too great to report precious friends.

Justin is still in Cleveland. He had a great couple of days with Vic and is now getting some much needed time with his parents!! He is feeling blessed :) I am so glad he has had good company while I am at home with our babies.

Today has been a very sad day for me. Justin has been burdened with more and more bad news. He still does not have lung biopsy results, but has been told he will have them tomorrow at the latest. He is now on a new set of antibiotics. His pulmonologist cannot tell him yet if it is the interstitial lung disease or scleroderma that is causing the most problems right now. Praying for news on that asap because that will determine treatment. And as for that little word "treatment"...its not medically a possibility. Suppress is the word they like to use. Whatever. I am more than sure that God has a whole different vocabulary :) Justin will need to change his lifestyle forever in regards to large crowds and germs. He needs to be extremely careful and steer clear from crowded places. If he needs to be in a busy place he will need to wear a mask.

I will not be going on my annual mops convention trip, because i need to be with my family. Broken hearted for sure...but hear loud and clear that with my family is where I need to be. I am sure going to miss some special time with some of my very best friends. Justin wanted me to go very badly and be "normal" and get "filled up"...but God has something else planned out for us right now. It is going to be a rough few days. Justin wants me with the kids and I want to be with him. Our reality is changing more and more...Justin diagnosis are getting worse and more dark. Please Please Please continue to lift us up everyday. Satan wants in this family so bad...he wants in our house and in Justin's body. WE WILL NOT ALLOW IT!