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!