Living Life Between Surgeries and Myriads of PCD Stuff

     As I sit down to write an update, I'm pretty tired out--but from a very good thing this week.  Our dear friends, Jenn and Jeremy, got to officially adopt their littlest guy, Asher!  It was so fun to be able to be at the court hearing--funny side note--as Jenn and Jeremy are sitting there with three boys 3 and under on their laps all dressed up in cute little suits, one of the questions they were asked was, "Jennifer, do you know what it takes to be a parent?" That got a lot of laughs--she's right in the middle of it!  Days are exhausting and hard, but fun and good all at the same time....at least from what I have observed.  Usually when you've hit that point where you question what in the world you are doing trying to parent, your little one comes up and gives you a giant hug and kiss or something of the sort or says the cutest thing.  

Landon, Jeremy, Jenn, and Asher

      As you can imagine, Mother's Day can be a hard day for me.  I try to prepare my heart every year, but something usually always catches me "off guard" or the emotions just come and I end up in tears.  As the years have gone on, it has gotten easier in some ways, especially getting to love on so many sweet nephews and nieces.  Before church, I felt the tears were really close, so I was praying a lot and managed not to break down during greeting time and then the sermon was absolutely perfect for me.  It was on Proverbs 1 and about how "the fear of the Lord is the beginning of wisdom."  I KNOW in my head and my heart that God's best is for us to not have children right now--otherwise, we would have them.  On days like today when I wake up and have a tiny burst of energy and spend the rest of the day exhausted, I'm reminded of those truths and very content with the path God has for us.  However, there is still a grief and a loss and likely always will be until Jesus comes back or takes me home.  I was completely at peace at the end of the sermon and thought, "Ok, I made it--not gonna cry."  Well--they had the kids bring all the Mom's roses at the end of service and Jenn had Landon bring me one...the tears just came.  He came right to me and I held him while we finished the last song, tears streaming down my cheek and Landon saying as they were praying, "All done? All done? All done?" :) 

     She had also gotten me a dress and a card and had Landon sign all the kiddos names and wrote a sweet note thanking me for being a second Mom to her kiddos.  It meant the world to me and I'm so grateful for Jenn and her friendship!

      All this life stuff has been happening simultaneously with a million phone calls to and from the pulmonary clinic trying to get an appointment before my sinus surgery which was rescheduled and then ultimately canceled because I couldn't get into pulmonary in time.  We have a trip planned over the 4th of July and my pulmonary appointment is not until May 27th, which doesn't leave enough time to get a plan together, a surgery date, and then heal enough in time for the trip, so the plan now is to see pulmonary, figure that all out, and then schedule surgery after our trip in July.  I am still having my port placed next Tuesday at 11:00am--they don't have to put you completely under for that so it's not as hard on your lungs so I don't need a plan before that surgery.  After my last port was placed, I was pretty sore everywhere for a week or two and then where the catheter went over my collar bone, I'd get a burning sensation and couldn't really stand up for a month for more than 15 minutes at a time without a lot of pain.  I'm praying I can avoid that this time, but we'll see what happens.  

     It's always interesting trying to balance living life and getting the rest, my treatments in (getting better about getting that 4th set in!) and other stuff that needs to happen for me.  This week with the adoption, things kind of snuck up on me--I ran errands with Jenn on Tuesday, had the adoption and after party Wednesday, then two doctor's appointments yesterday, so today is a turtle day.  I did manage to cook dinner (yay for the little things!) and wanted to update everyone but now I think it's audiobook time--or a movie.  Not sure how turtle-ish my brain is feeling tonight.  :)  Thank you for your prayers!!!  Hope you all have a great weekend!

Resting in His Everlasting Arms,

Rachelle :) 

General Update 5.4.16 and Prayer Spotlight: Papua New Guinea Missions Team

     I've had several people ask how I was doing, so I figured I'd write a general update on things.  I saw the port surgeon today and will be getting that minor surgery scheduled for probably sometime the week of May 16-20.  I had a call from my ENT's office and they are rescheduling the sinus surgery--I was wondering why it was scheduled on Memorial Day, but apparently the doctor decided to enjoy the holiday and go out of town so waiting for a call back to see when that will be scheduled.  I'm also waiting for an appointment with the new Pulmonologist.  I talked with the office yesterday and she started a couple days ago and they were just talking and trying to figure out when she could see me.  There is a lot of waiting going on over here right now.  Not my favorite thing to do, but what God has called me to, so wait and trust I will.

     As for how I'm actually feeling these days--here in AZ it's been super windy and dusty the last couple of weeks so I've been wearing my mask when I go anywhere and staying inside as much as possible, but it's still getting to me.  I've been extra congested, fatigued, and my sinuses are miserable--which in a way makes me look forward to the surgery.  It will be good to have everything cleaned out and opened up to get things out easier in the future.  The actual process won't be fun, but hopefully it will help longterm.

     As for the vertigo and balance issues, I'm doing much better--even able to drive again.  Although depending on what I'm doing I still ride with others for longer days as I just fatigue really quickly.  Yesterday I drove into town and shopped Costco by myself and was wiped for the afternoon.  It felt good to be able to do it, but I was definitely exhausted and thankful I live nearby friends and family that I can catch rides with or have pick things up for me.

     I was able to work up enough energy to go to lifegroup (our church small group) with Jenn for the first time in a REALLY long time, so that was a tremendous blessing.  We finished up first Peter last Sunday and discussed the sermon and the book as a whole.  1 Peter is one of my "go to" books when I'm struggling as Peter addresses Christians that were suffering in many different ways and at the end he encourages us to "Stand firm".  Our church had bookmarks made that are awesome--it's filled with verses from 1 Peter and at the stop says "Stand firm because..."  Definitely something I will carry with me and when I am tempted to fear, worry, despair, frustration, etc I will have an arsenal of "fighter verses" to remind me who I am in Christ and to keep an eternal perspective in the midst of the hard days.

     It's awesome how God works because as we finished 1 Peter, our missionary friends that are in Papua New Guinea just started 1 Peter and shared this blog post about suffering yesterday.  There is much suffering and sorrow in this world but it's good to remember that God is still reigning on His throne, in complete control, and that we can "cast our anxieties on Him for He cares for you." (1 Peter 5:7)  Yesterday as I was praying for Jordan using my "Prayers of an Excellent Wife" book by Andrew Case (ladies this book is incredible and prays through scripture...highly recommend it!) there was a quote about prayer that was really convicting: "To clasp the hands in prayer is the beginning of an uprising against the disorder of the world." Karl Barth  It's so easy to forget when we get overwhelmed by the cares of this world that we should run to our God who is ready, willing, and able to handle ALL of our baggage and emotions and expectations that we so often place on other people.  Prayer is one of our greatest weapons and we far too often neglect it.  In light of that here is the "Prayer Spotlight" for this week:

     Our old church in Phoenix, Grace Bible, has sent out a team to the tribal jungles of Papua New Guinea (PNG).  The plans took years in the making and it has been so neat to see how God has provided and worked to prepare the team that recently *finally* moved into a tribe in the jungles of PNG.  There have been lots of bumps and changing plans along the way, but God has been so faithful to get them into the tribe.  They are currently working on starting to learn the Ndo language so they can eventually write it down and translate the Bible into their language and share the Gospel of Jesus Christ with this tribe.  They surveyed several tribes and were invited to come live with the Mawelelo people of the Ndo language group. You can read more about their story on their blogs:

Zach and Cassidy Cann: www.cannsofclay.com

Matt and Cameron Dodd: http://withoutapreacher.com

Jeremy and Lorie Lehman: http://jeremyandlorie.com

     Thank you for praying for my dear friends--Lorie is dealing with some health issues right now and trying to figure out what is going on in another country is challenging.  They had a tree fall down in the village and broken things in their houses and all sorts of varied "adventures" so far.  Praise God who has brought them this far and will continue to be found faithful and will complete the work He began in each one of us until That Day when Jesus comes back or takes us home!

     Hope you all have a great day!
Rachelle :)

I got Waddles in the hospital from Aunt Netta....Jord has decided to play a game and he puts him somewhere every morning...this morning he was strapped in and ready to go with me to my doc appt.  Instead of "Where's Waldo?" It's "Where's Waddles?" at our house...I have found him reading, peeking out of the washer, in the pantry, doing treatments and a host of other things that always make me laugh--I love my hubby and his creativity so much! :) 

Waddles started to get buried as I ran errands and more stuff got put on the seat with him lol. :) 

#Aurorasjoy

     It is with sadness that I share that my dear PCD friend lost her baby girl, Aurora Rose.  I asked you to pray for her and for a miracle a few weeks ago when Ashley found out that her baby girl had Trisomy 18 and was "not compatible with life".  Our hearts are all broken for our friend.  Ashley and her husband, Shawn, and their families are asking that instead of sending cards or gifts they want to honor Aurora's memory by sharing the joy that she is experiencing in heaven by doing something kind for someone.  I am praying about it and haven't figured out exactly what I'm going to do yet, but I will share that here when I do.  I ask that you all would first of all be praying for Ashley, Shawn, and their family.  The loss of a child is indescribable.  Secondly, please consider doing something in honor of Aurora and use the hashtag #Aurorasjoy on your social media outlets when you do so that the family can see the joy their baby girl is spreading on this earth.

     I have been reflecting on the loss of so many people around me this year and lots of friends and family members not only losing someone close to them, but also going through very difficult struggles themselves.  My prayer list grows everyday and some days it overwhelms me to think of how much sorrow and sadness and struggle there is in this world because of sin--and yet at the same time an amazing amount of beauty, joy, and bliss is also to be enjoyed in this world because of God's amazing grace.  It's the paradox of the mixed condition those that are in Christ find themselves in--we are saved and made for another world--free from sin and its power and presence, but still living in this flesh that is sinful and has sinful desires.  O for THAT DAY when Jesus comes back and sets everything aright--what glorious Days those will be!  In reflecting on these things, I wrote this poem in memory of Aurora.  I hope it brings you joy in some small way.

In Loving Memory of Aurora Rose #Aurorasjoy

Life is such a precious gift,

Given to each one of us from the Father of Light,

Born with a purpose, 

Special and unique,

No one else can take our place,

Or fill that space.

That space that you encompass,

Brings a special light to mine,

As you join me on this journey,

What deeds shall we find?

Each morning we awake,

We have a choice to make,

Will we greet the day with joyful anticipation,

Or slumber hours, minutes, and seconds away?

We travel awhile with joy until we see,

That along the path comes sadness, sorrow, strife.

We try each morning to rise with joy,

Until one day we realize,

The joy is gone and replaced with doubt…fear…even despair.

What happened to the life I once knew?

That life that I was meant to live?

None of these burdens were intended for me…

Surely God wouldn’t expect me to suffer…

But O suffering has it’s hour.

Suffering has its hour because of sin,

Sin has power until it meets,

Our conquering Savior, Jesus.

God become man, in MY place,

Living the life I should,

The life I strive to, O how I pray to live,

But fall short every time.

God knows—God Sees—God Cares

Every person unique,

Like a snowflake or a gentle rose,

A sunrise after an earthquake,

The quiet pitter patter of rain after a summer storm,

The butterfly rising from the cocoon…

The plant pushing through the dirt,

The work is hard, there is darkness clouding out the light,

Tears, pain, exhaustion,

Yes, death, O horrible death.

And yet…peace, comfort, hope in the midst of sorrow.

Hope for the dawn, Hope for the sun, Hope for the light…Hope for the promise of tomorrow—-tomorrows beautiful light.

The everlasting light of Christ,

The first thing she sees,

Little Aurora Rose—precious in His sight.

We don’t understand—we weep, we cry, we hug, we rejoice,

For this little one knows nothing but pure delight….

Unending bliss, free from the sinful curse on this earth,

And One Day…O One Day Jesus is coming back for His own…

If you are hid in Christ what glorious Days those will be!

An everlasting home, created just for you and me. 

So come, I beg you, join me in this life,

This life we are living,

Always, only, all for Him. 

Rachelle Thomas  

Health Update: Sinus Surgery May 30th

     Yep, you read that right--came out of my ENT appointment with a sinus surgery date.  My understanding from my conversation with him in the hospital was that we MIGHT have to do surgery, but he walked in and basically started talking about getting a surgery date on the calendar and then scoped my sinuses and showed me what he's going to do--there's going to be a lot--he's basically going to open things up a lot more and so it's not going to be a fun surgery. For my medical friends and some language fun it's technically: "Bilateral frontal sinus exploratory, maxillary antrostomy, total ethmoidectomy and sphenoidectomy. Possible septoplasty." Say that even 1 time fast LOL :)  Out of all my 30 plus surgeries, sinus surgeries are my least favorite.  **Warning--a little descriptive so if you have a weak stomach you may want to skip the next few sentences** Why I don't like sinus surgeries is because during surgery the blood runs down the back of your throat and into your stomach.  Your first part of recovery and waking up you spend throwing up brown blood, which makes your nose bleed more and starts a vicious cycle.  Then you stop throwing up, but every time you cough it makes it worse--and I'm not exactly someone who doesn't cough--it's what I do 24/7 365---and I have to do treatments that shake my entire body to clear my lungs--which will definitely *NOT* be fun post surgery.

     I also saw my PCP (Primary Care Physician) yesterday and she said my right base sounded a little dim, meaning I'm not moving air as good in that area, which isn't *normal* for me in the past, but not sure if that's part of my *new normal* or not.  Would love prayer for the lung doctor situation--there is a new doctor that is coming and going to follow me in clinic but there have been some hiccups and she doesn't have a schedule yet.  The doctor that was seeing me is doing more inpatient stuff, so have a call into the clinic to find out who can see me in the meantime because I have to do a full set of Pulmonary Function Tests now that I'm not actively sick and get cleared for surgery, and come up with a plan for the surgery--I will likely be admitted as surgery is hard on your lungs.  I'm not sure if they will just want to observe me or if they will want to put me on a preventative course of antibiotics to keep things from getting out of control before it starts, but obviously any antibiotics come with risk with me.  I also need to have a port placed prior to surgery, which is a minor surgery in and of itself.  That way I don't have to get another PICC line and have the risk of infection again.  There is still a risk of infection with the port when it's accessed but not near as much as with the PICC lines.  (If you would like to learn what the difference is between the two, here is a link to a PICC line description and here is a link to a Port a cath (what they use for chemotherapy).  I had a port for 5 years, but it clotted and had to be removed in 2012.

     I haven't really had time to process stuff yet--I literally got home from errands after the doctor's appointment, started treatments and this update.  Surgeries are never fun, but they are a reality of PCD.  This is far from my first (I was 11 months old with my first surgery--a set of ear tubes) and it certainly won't be my last.  As I get older and the disease progresses, things also get a lot trickier.  I'm thankful there is time to prepare and to get all the logistics together before surgery, but at the same time, I'm disappointed because it seems like *just* enough time to get to feeling better and back to my baseline just in time to be knocked down again.  Those are the thoughts I need to guard my heart against--and with truth from God's Word.  This didn't surprise Him and He knows all the details and what is truly BEST for me--physically and spiritually.  This may not be the beginning of the summer I had planned, but it's obviously what God wants for me.  I'm sure I'll have my tears between now and then but in the end, God's grace is sufficient--even for the most complicated details of bringing a good, safe, comprehensive surgery plan together--and the hours I will likely spend on the phone lol.

     Thank you, once again, for all the prayers, love, and support!  Jord and I could not walk this road without all of you around us!

     In His Mighty Grip,
Rachelle :)

Treatment time :) 

Prayer Spotlight: Russ and Ash Hoober

     I've decided to start a weekly post called "Prayer Spotlight".  One of the best things that has happened directly because of my PCD is the time I have to pray and read my Bible.  Even on my healthiest days, I now have to do my treatments 4 times a day, up from 3 before this last hospitalization.  What do treatments consist of? Nebulized albuterol (to open up my airways), nebulized hypertonic saline (to make my mucus secretions thinner and easier to cough up), nebulized pulmozyme (it's a specialized drug that targets the leftovers of white blood cells and DNA when they are done fighting infections and helps break those down so I can get that junk up easier), and 30 minutes of chest percussion therapy, which mostly consists of a vest I put on and it vibrates and breaks up mucus and rips secretions off the chest wall, making it easier to cough up.  In short, Chest Percussion Therapy or CPT for short, is basically a variety of ways to use a combination of drugs and "beating" whether by respiratory therapist, (or a trained hubby, parent, or friend!), or a machine or device to get the crud out of our lungs since my cilia don't do it for me like everyone else's.  These basic treatments take anywhere from 30 minutes to an hour depending on what I'm nebulizing and when, so at a minimum, a typical day altogether it's at least 3 hours of sitting time.  By God's grace, the first set is always dedicated to Bible and prayer time.  With the additional set added, I've decided to try and dedicate another set to prayer time.

     I love to pray and see how God answers those prayers--big and small.  One of my favorite quotes is about Martin Luther who said, "I've got so much to do today, I need to pray for at least 4 hours before the day starts."  That is always such a convicting reminder of how little I pray.  Another quote that has stuck with me was when I was first saved someone said, speaking of Jesus, "He who needed to pray least, prayed most."  There are many times in the New Testament where you will see Jesus going off alone to pray all night, or withdrawing from the crowds to pray.  He is our example in everything--and how much more so in prayer.  Prayer draws our hearts closer to the God of the entire universe--the only One who CAN change our circumstances in the blink of an eye or change our heart or habits.  Oftentimes, we trick ourselves into thinking we want to "DO" something other than "just pray", but the reality is that praying is the BEST thing we can do.

     When I was in the hospital, one way I was able to take the focus off of myself is finding out how others were doing and asking how I could be praying for them.  When we "regard one another as more important than ourselves" as it says in Philippians 2, our eyes are taken off of our circumstances and focused on helping someone else, who is often facing even more difficult circumstances than yourself.  Like the 3 year old girl Kinzie who was starting chemo, or the parent that just lost their child, or the friend that finally got pregnant and her baby has trisomy 18 and will likely not survive, or a family friend's little boy who just got diagnosed with a brain tumor, or the millions around the world that don't have access to medical care--yes 39 days in hospital was hard--BUT praise God I had access to a hospital and health insurance to pay for it (that stay probably cost way more than Jordan makes in an entire year!) and that I have such a wonderful support network that was able to stay with me, visit me, encourage me, pray for me, make me laugh on the hard days, and give me reasons to smile every single day.  So without further ado, I'd like to share a prayer request for my very first "Prayer Spotlight" of the week.  :)

     Russ and Ashley Hoober are good friends of ours that we met at Grace Bible Church in Phoenix.  We didn't meet right away, but Ash has some health issues and we connected in that way and then we started going out to lunch after church with their group of friends pretty regularly and got to know them even better.  Ash and I have enjoyed praying together many times--Russ is a great leader and always has interesting dialogue to add to conversations, whether it be theological or political.  They now have a 2 1/2 year old son, Augustine, and Russ was recently diagnosed with a rare soft tissue cancer.  Ashley sent these specific praises and prayer requests:

Praise God for:
1. That we trust in the Father of Mercies and God of all Comfort and that are days are like grass (short!) (2 Cor 1, Psalm 103)
2.  Even worse that cancer is our sin!  And it was crushed at the cross with Jesus!  "He does not does not deal with us according to our sins, nor repay us according to our iniquities.  For as high as the heavens are above the earth, so great is His steadfast love toward those who fear Him! "(Psalm 103)
3. The Lord allowed us to find the cancer and treat (initially) quickly
4.  That the Lord has changed Russ' heart- he is more humble, more joyful, and has an ongoing dialogue with the Lord because of this trial (Romans 5)
5.  For our attitudes during surgery recovery and Russ' attitude to follow doctors orders and not be restless

Pray for:
1. Focus on the Lord in a season of waiting and uncertainty
2. Healing from the surgery, that the surgeon got all the cancer out from his surgery
4. To trust Jesus and His design that suffering is for our good
5.  Wisdom for the team of doctors and oncologists we will be working with (fearful due to it being a very rare cancer)

     They have also incurred a lot of medical debt and will likely incur more.  A GoFundMe account has been setup to help them out.  Please prayerfully consider donating to help them if you are able, at the very least, please keep them in your prayers, and I would love it if you would share the link on your social media sites.  Thank you so much friends!

     As a funny side note--Ash is saved in my phone with (Huskers) next to her name because she and Russ are big Nebraska Cornhuskers fans as he is from Nebraska--where Jord is from, and a very large part of my heart lives with multiple close family friends in Lincoln and other dear friends (our oldest and first nieces/nephew) in Chadron that I got to visit last May.  Thank you for praying for my dear friends!  I will keep you posted! 

In His Mighty Grip,
Rachelle :) 
     

Home Again, Home Again, Jiggity Jig :)

     Being home is definitely very different from being in a hospital room...one of the top evidences being the amount of time I have to blog. ;)  It's a very good thing though!  I am planning on trying to do at least twice a week, once I get a new routine established in my new home.  It was definitely very different coming home to someplace I have never been before, but I love the house we are renting--it is such a blessing.  It's interesting having someone else pack you up--although boxes are labeled very well, I am still finding surprises in certain boxes and still haven't found some things that would be really useful, and I'm slowly (with help) rearranging the kitchen to where it will best be used by us.  We aren't there just yet, but looking forward to getting some things on these walls!  

     I didn't realize just how weak I still was until I got home Friday afternoon last week and would get exhausted just walking from living room to bedroom and back again.  I found all those muscles I hadn't used in awhile Saturday morning! ;)  My puppies were EXTREMELY happy to see me and Crash has been my shadow ever since I got home.  She's laying at my feet right now--love my puppy dogs so much.  Health wise, I've been doing pretty good, all things considered.  I'm re-building strength and stamina.  I got to ride my horse for the first time yesterday and he was feeling good and the turkey bucked twice so he obviously knew I was doing well enough lol.  He was acting like he was 2 instead of 22...such joy and sparkle back in my life!  

    I've also been getting lots of nephew time!  I got out the day before Landon's 3rd birthday party, which I was super happy to be able to attend for a little bit since we are so close to their house now.  Hunter called me first thing this morning and asked if he could come over to my house because they've spent a lot of time here.  It's such a blessing being so close to family and friends and little ones that I can enjoy and then send home and rest.  :) 

Happy 3rd birthday Landon!

Hunter and Aunt Shel :) 

Gunner is getting so big!

     I had my first of many doctor's appointments today.  Thankfully I had some down time this week to rest a bit before things get crazy.  While I'm doing so much better, I still have a long way to go.  One of the hardest adjustments has been adding a 4th set of treatments in, permanently.  It seems this last infection was quite the doozy and I'm learning another "new normal".  I'll never forget one of the memes in our PCD facebook group: "My new normal is constantly adjusting to new normals."  With the progression of my PCD and the bronchiectasis now on the right side, it seems things are declining a bit.  My lung function tests would not go above a 74%, no matter how hard I tried, so that appears to be my new baseline, down from 79% last year at this time.  My sputum also seems to be darker and have some more green in it than my "normal" so adjusting to that as well.  My biggest prayer request is that I could get a good schedule established, redeem the time how God wants me to and submit my schedule completely to Jord, and get that 4th set of treatments in.  That has been the biggest challenge to date.  I know once I figure out a routine it will become old hat, it just takes a little more discipline and thinking ahead than three sets do.  :) 

     Speaking of which, I should probably get to those.  Got some other things to do to try and get a meal together tonight.  :) 

    Rachelle :) 

Headed to go ride my horse! 

How Uncle Justin babysits Hunter, or the other way around :) 

Officially FREE!!!

This girl has escaped the hospital, praise the Lord! One last divine appointment as we were loading up the car a young girl in a purple jacket was sitting outside with her Dad hooked up to her IV.  Her Dad saw my vest and asked if I had Cystic Fibrosis...I explained it was similar and gave her my card. Right before we were pulling out, I asked if she liked horses...she lit up and said she had always wanted to ride a horse. I told her to call me when she gets out and I would take her for a ride...she lit up even more and it brings tears to my eyes, even now. Please pray for Sarah and her Dad...she just got to the hospital and will probably be there for 2-3 weeks.  This world is full of disease and suffering because of sin, but there WILL be a Day when Jesus comes back and sets the world aright!

Praising Him!!!
Rachelle

Heading Home with Some "Lessons from my Hospital Bed"

     Morning everyone!

     To say I'm excited this morning is quite the understatement!  2 hours and 15 minutes from now, Lord willing, I will be getting into my Mom's car and heading to my new HOME!!!  Not that anyone is counting or anything. ;)  This morning some good friends of ours shared a link by John Piper called "Lessons from my Hospital Bed."  They were our small group leaders when we were at Grace Bible Church in Phoenix, Jeff and Mandy.  Jeff has Rheumatoid Arthritis but has recently had a scare and awaiting results to some very scary and serious tests--the kind that change your life forever.  Please keep them in your prayers, along with their beautiful children, James, Miriam, and Isaac.  One of my favorite stories that Mandy shared one time is about their daughter, Miriam.  She was sick and throwing up and she told her Mom, "Throwing up is the 2nd worst thing in the world Mom!" Mandy asked what the first was, thinking of something physical.  Miriam replied, "Sin is!"  Out of the mouths of babes come incredible truths from God...reminds me of when Jesus calls us all to "have the faith of a child."  

    These "lessons from a hospital bed" are O so true my friends! Praising God I get to escape after 39 days, but LOVE seeing those divine appointments that he talks about in #3 up to the minute of getting in the car and going HOME! Whether it's the lady in the hallway crying who just lost her brother suddenly and her husband might have blood cancer or the military guys that just lost someone. The Granny in the elevator whose 3 year old granddaughter is starting chemo or the cleaning people who need to be encouraged and reminded that their job is important too--in fact I miss them the most when I go home cause the trash doesn't magically disappear there!  #5 reminds us to again have the faith of a child--through the searing pain and cloudiness of drugs, our minds often can't focus or think and simple truths are exactly what we need in these difficult times: 

 “The Lord is my Shepherd.” Period. “Christ gave himself for me.” Period. “I will never leave you.” Period. “Nothing is too hard for the Lord.” Period. “Everything works for good.” Period. These are like white stones with your name on them. And you hold them in your hand as you groan and wait.

     #10 has been my heart cry to the Lord for all of my physical suffering that comes from PCD:

"Pray that none of these hospital hours, none of this pain, none of these fears, none of these relationships, none of this life-altering season will be wasted."

The last 49 days on IV antibiotics and 39 days of being in the hospital have been hard--extremely hard and even terrifying at some points--BUT God who is rich in mercy has carried us through to the other side of this particular valley and praise the Lord I am that much closer to Jesus because of it!  To Him be the glory, great things He hath done! 

To read the entire article Click HERE

 

This PICC line will SOON be gone!!!! :D

smile emotico To Him be the glory great things He hath done!

New Possibility 4.6.16

     Morning world!

     I saw a pulmonary doctor a few minutes ago and he is proposing to the team that I go home and finish out the antibiotics there.  I was under the impression I had to be in the hospital the entire time of the Cefepime as I had been desensitized to it, but he said since I've been on it so long with no problems, he didn't see any issues with me going HOME and finishing out the antibiotics there, so we are shooting for Friday to give the hospital time to coordinate everything so I don't end up at home without something I need.  Excited you ask?? BEYOND excited!!!!

     Day 37 is starting out great! :)  It's still got to be approved by the attending pulmonologist, but now that I know I could finish them out at home, I'm stoked and ready to go lol.  Still reminding myself to hold it lightly and trusting God's best plan for me.  He is so good and gracious!  And if I DO get to go home Friday, we'll probably need to hire a moving truck for all my stuff here LOL.  ;)  I'll keep you all posted! 

Rachelle :) 

Praises, Prayer Requests, and God's Incredible Kindness 4.5.16

     Good morning!

    Praise the Lord, I am continuing to feel better!  My sputum is getting lighter, thinner, and less of it.  My liver enzymes are coming down and most importantly, I'm feeling SO much better! I had enough energy to walk outside this morning and my tech took a picture of me in front of some beautiful purple flowers.  I love this time of year--after living in MT for a year with actual seasons, spring had a whole new meaning after the long winter.  Here in AZ, we don't get that contrast, but I love the wild flowers that are blooming everywhere and I can't wait to get out of here and see them for myself!

     I will have Pulmonary Function Tests or PFT's tomorrow which will be a determinative factor in when I get to go home.  Yesterday I was told there is a chance I could go home THIS Thursday!!!!!  Talk about exciting...but at the same time, I'm trying to hold that lightly so that I can not be disappointed if that is not God's will.  It depends on how long they want to do the new antibiotic.  My hospitalist is pushing for sooner rather than later because I'm on day 46 of heavy duty IV antibiotics and we don't want to do other damage in trying to get control of the Pseudomonas.  Not only are they heavy duty drugs, but I'm also on heavy duty doses--the typical dose for both of them is every 12 hours and I'm on every 8 hours with higher than normal doses.  The Colistin is kidney toxic so I'm on IV fluids 24/7 right now to help flush stuff out so my kidneys don't have issues.  So far it is working, but we don't want to get to that point when we have to make even more difficult risk/benefit decisions, especially with how my liver has been acting up.  Normal liver enzyme or LFT levels are from 25-50 and mine have jumped from 25 to as high as 450 at one point.  Thankfully, they didn't stay high enough long enough to do any long term damage and I had two different ultrasounds just to make sure nothing serious was going on.  As a result of that, my platelet count went down at one point, which is your blood clotting red blood cells--so I was bleeding and bruising so much easier because of that.  As with any drugs, there are always side effects so with me there is this constant game of trying to keep the Pseudo from permanently damaging my lungs and making my PCD progress faster, but not killing the rest of my body--like my poor GI system that is simply trashed after 32 years of basically living on antibiotics full time.  A radical diet change that my GI suggested way back on February 19th right before I got admitted called the FODMAP diet has helped my GI symptoms significantly.  The hardest part of the diet is no garlic, beans, or onions--ummm I grew up in Tucson and don't know how to cook without those three things!  God has graciously provided people around me that have had to do radical diets as well so I've been given great tips and some yummy recipes that go with my diet!

     Another sweet kindness of God is that a family friend that watched me grow up posted this picture on my fb wall last night and said, "This is for you--your light is always shining." 

Turns out, she painted this, and is giving me one!!!!!  Yvonne, I can't tell you how encouraging this is to me and I can't wait to get home to my new house and start decorating!  And cooking and having people over to thank all of you that have so graciously prayed for us, loved us, encouraged us, and helped us shoulder these boulders God has given us to carry--we couldn't do it without you!  Also--please pray for the following:

*Jordan's health--he woke up not feeling good this morning--weak and shaky and just plain worn out.

*Kenzie--I met her Granny in the elevator--she's a 3 year old little girl that just started chemo.

*Louis--a Pastor that had to do a funeral for a 1 1/2 year old little boy last night--please keep him and the family and friends in your prayers.

*Ashley and Shawn--one of my PCD friends who finally got pregnant after 5 years of not being able to and found out at 30 weeks that her precious little girl has Trisomy 18 and "is not compatible with life".  We know the One who controls life and please pray for a miracle but also pray for comfort, peace, and wisdom as they walk this incredibly difficult road.

*Colby, Colton, and their Mom and Dad--Colton has PCD and Colby has another rare disease and is septic and fighting a very serious infection and in critical condition.

*Tori's parents: Tori is a friend's cousins' daughter who just passed away from Krabbe disease on Easter morning--she was 1 1/2 years old.

*A four year old little boy that was just told his cancer is stage 4 and his chances of surviving are 20-30%

*Several unspoken prayer requests

*That I would continue to put "others needs above my own" as God calls us to in Philippians 2 just as Jesus did.  Yes, I've been here for a long time, but I have Jesus, a wonderful husband, family, and friends that love me, care for me, and shower me and Jord with His love and care.  Thank you for being Jesus hands and feet to us as we have traveled this difficult road--it is far from over, but I'm hopeful and encouraged that I am feeling so much better and have had very minimal reactions to Colistin--a drug that typically has many debilitating side effects--I truly believe it is because of your prayers to the throne of grace on our behalf.  I can't wait to get to heaven and see the crowns all of you will have to cast at Jesus feet for praying on our behalf.  Remember--if all you can do is pray for us, that is THE most important thing you can do because God is the only One who can truly change our circumstances in the blink of an eye--or change our heart to accept unchanging difficult circumstances.  I'm so grateful to the God who has grown us tremendously in this trial--to Him be the glory, great things He hath done!!!!

Praising Him!

Rachelle :) 

***Update 11:30: Just saw the doc and the plan is 14 days with both antibiotics so next Thursday will be my release date--so 8 more days--let's do this!****

Jord and I's Story :)

     I've been meaning to share Jord and I's story for awhile as when you first meet someone that is one of the common "getting to know you" questions girls like to ask or tell about.  After 28 days in the hospital on the same floor, amazingly I'm still meeting new people, but have also made many new friends.  We have plans for a double date with one of the patient care techs and her hubby, I'm "adopting" lots of people's kids (and "oohing and aahhing" over lots of adorable baby pictures!) and making plans to Lord willing, take some out to ride Buddy for some good old fashioned Equine Therapy.  I'm SO ready to be home with my hubby and puppies and spending time with my horse, but trusting that God's plan is best for us!  You will hear me talk about my awesome hubby and how well he loves me through more sickness than health here, so just how did it all get started?  It's a funny story--and one I love to tell so here we go! :)

     When I graduated high school, my best friend Melisa, and I spent a lot of time together that summer.  I can still vibrantly remember sitting at the little table in her parents front room--I can't remember what we were doing, but the conversation went something like this: "Ok, now that we are out of high school and in college, we've gotta get a boyfriend.  No more of this not dating thing.  So God, (yes, we told God how it was going to go--real mature, I know!) the second day of class, Melisa is going to walk in and there is going to be the blonde hair, blue eyed guy and she's going to drop her pencil, he's going to pick it up, and the rest is going to be history."  We laughed at ourselves and didn't think anything of it and kept doing what we were doing.

     That Sunday before classes started in August, our church, Casas Adobes Baptist Church, had just started a college youth group.  We got there and there was a new guy--blonde hair, blue eyes and super cute!  We were at the mall later that day and both were like, "Did you see that guy??!!"  Lo and behold, next week on Tuesday Melisa walked into her writing class and guess who was there--yep, Nick--the new cute guy from church.  We couldn't believe it!  Melisa did a writing project with him in class and we decided to get a group together to go to Funtasticks and Melisa invited Nick and told him there was a big group going.  I invited a guy from one of my classes at the UofA but he couldn't go and Melisa invited her cousins, but they got the dates mixed up so the night comes in August of 2002 and Melisa and I are sitting at Funtasticks--by ourselves--waiting for Nick.  We were going, "What in the world are we going to tell Nick??  This is SO awkward...we told him it was going to be a big group and here we are just us, waiting for him!"  We saw Nick approaching our table and I looked up and noticed Nick had brought a friend with--my thoughts went exactly like this, "Oh! Nick brought a friend....oh...he's ok."  Yep, you guessed it--that was Jord and the first time I set eyes on my hubby.  He still teases me mercilessly about those thoughts!

     We had a great night miniature golfing and all four of us started hanging out all the time.  We met a lot at Nick's house cause he had a pool table and a pin-ball machine (didn't have to use quarters!!) and watched movies.  In December of that year, we got invited to a New Year's party at Jord's house, but I couldn't go because my Mom's rule was that I had to stay the night wherever I went, and that obviously wasn't going to work.  Jord and I had exchanged phone numbers to talk about the party.  Over Christmas break, Nick, Jord, Melisa, and I along with several others went up to Mt. Lemmon to play in the snow.  Jord and I got in this huge snow fight and I remember thinking, "I'm totally flirting with him...do I like him? What the heck, why not??"  Nick got hurt flying off a tube sledding, so we had to leave early, but Jord also did a snow angel in a t-shirt...yep he definitely wasn't from AZ!

     We started talking on the phone everyday after exchanging phone numbers.  All 4 of us went to Quizno's on Thornydale that has since shut down and Jord's sandwich actually caught on fire.  We all laughed at that.  Before we left, he handed me an encoded poem that I had to use my good ole T-I 83 calculator to decode.  I was riding with Melisa and we had stopped to get gas, so I started working on it and he had said, "I just wrote this the other night...it's not meant for anyone in particular, but thought you might like to read it." I got the first line decoded, "On a spring day or summer night, your beauty is a wonder to my sight."  I got chills and somehow knew right then he had written it for me.  (Sorry honey, your secret is out!)  We started exchanging poems and talking everyday and one day Melisa, Jord, and I were sitting in her car talking after classes at Pima when we both said we liked each other.  The first time we held hands was praying before dinner at Melisa's house (that was what you did...Melisa, there were a lot of firsts with you involved!).

     Finally at the end of February I was helping my family unload the camper and talking to Jord at the same time.  I remember sitting down on the love seat in the living room and asking, "Ok. So if we aren't dating and we aren't courting, what are we doing? Where is this going?"  He promptly replied, "We're dourting."  I laughed and then said, "Serious answer please...."  He explained that his parents had been praying for his future spouse since they adopted him at 6 days old and he had started praying when he was 13 and he figured he'd just get to know a girl and then marry her.  I remember thinking at the time, "But you date! What else is there? And that is the dumbest thing I've ever heard!"  He went on to say that he would tell his friends what he wanted to tell them and I could tell my friend what I wanted to tell him so I said, "Ok, you're my boyfriend then."  So February 22, 2003 became the "official dourting" date.  The next day was my birthday and he showed up at a gas station meeting me with literally a bucket of flowers from Trader Joe's.--it took 6 vases to put them together and he had gotten me a lot of stargazer lilies which have become my favorite flowers.

     Later he would tell me that before he agreed to let me call him my boyfriend he knew he was going to marry me.  I asked him how in the heck he knew that because I had contemplated breaking up with him at one point because as a new believer I was trying to figure out how to make God first and had a prayer written at the end of Philippians that went something like this: "Lord, help me to make you first, whether that means quitting school or breaking up with Jordan, I want to make you first in my life...."  I was wrestling with how much I loved Jord and didn't understand how I could love someone so much and wanted to make sure I was loving God more.  I didn't go through with it and I remember walking through the desert in late March of 2003 and I knew I was going to marry him.  Had we not both been going to school and living at home and not able to afford to get married, we would have done something like my Mom and Dad did where they met in April and were married in September, but we had to wait on God's perfect timing.

     We got engaged that November...we had been to visit my Grandma and Grandpa Moor in Casa Grande and he was staying the night at my parent's house that night.  On the way home, he asked if I wanted to take a walk when we got there...I remember looking out the window dreamily as we passed Picacho Peak and thinking, "He's going to ask me tonight!"  We got to the house and we went inside and it was dusk and he asked me to go help him get some stuff out of his car.  He asked me to grab his clothes out of the trunk while he grabbed something out of front of the car.  I grabbed his clothes and then noticed a suitcase next to it and figured he needed that too...I started to pull it out of the trunk and it was unzipped and something fell out and hit the ground.  It was November 8th and his family gives gifts at Thanksgiving.  I knew he and his Mom had been shopping at the Thomas Kinkade store earlier and Jord can't wait to give gifts so I assumed I had ruined an early Thanksgiving present.  I put the clothes in front of my eyes and said, "I didn't see it, you can give it to me later, I promise!" He sighs, picks it up, suddenly realizes I really didn't see it, amazingly it hadn't broken and says, "I was going to give it to you right now anyway."  He hands me a beautiful circular box with a lighthouse scene on top of it.  I briefly saw something about "You are my sunshine" on the front and then he says, "It's a music box, open it."  I take the lid off and saw a folded over piece of paper--I thought it was one of those keep fresh packets.  I finally realize it's a folded piece of paper and open it and it says, "Will you marry me?" and he pulls out a beautiful amythest ring.  I literally froze and was speechless for the first time in my life.  I turned around and said yes and disappeared into his arms.  A funny side note--he had a pretty purple flowery paper that he had written on but forgot at home, so he tore the corner off his chemistry notes and scribbled on it and that's why it was folded over...both pieces of paper are still in that music box that is always displayed in our bedroom next to one of my favorite wedding pictures.  The ring had been his Grandma's high school graduation present and no one in his family had a birthday in February--it just so "happened" that my birthday was in February and purple is my favorite color (if you haven't already guessed that by now!).

     Just over a year later I did end up quitting school so we could get married.  That, however, is another story for another time.  We got married on December 3rd, 2004 and it is true what they say--every year it just keeps getting better.  Jord, you are my best friend, the love of my life, and my greatest earthly treasure!  God knew more than I ever could just how much I would need you these last 11 1/2 years....we've walked some pretty deep valleys in the last 5 years, but our love has only gotten stronger!  To God be the glory, great things He hath done!

     This last picture reminds me of one of my favorite memories of Jord--because Aunt Netta worked in recovery and pre-op at Northwest for one of my sinus surgeries, Jord was allowed to be in recovery before I woke up and my first memory coming out of surgery was him standing by my bed rubbing my cheek--God has blessed me exceedingly with the man He gave me.  I know it is Christ in him, but He is truly a priceless gift from above--I could never put into words how much he loves me and how well he loves me--sacrificially like Christ loves the church...Jordan truly fulfills this call to husbands from Ephesians 5:25-33:

Husbands, love your wives, just as Christ also loved the church and gave Himself up for her, so that He might sanctify her, having cleansed her by the washing of water with the word, that He might present to Himself the church in all her glory, having no spot or wrinkle or any such thing; but that she would be holy and blameless. So husbands ought also to love their own wives as their own bodies. He who loves his own wife loves himself; for no one ever hated his own flesh, but nourishes and cherishes it, just as Christ also does the church, because we are members of His body. For this reason a man shall leave his father and mother and shall be joined to his wife, and the two shall become one flesh. This mystery is great; but I am speaking with reference to Christ and the church. Nevertheless, each individual among you also is to love his own wife even as himself, and the wife must see to it that she respects her husband.

Found this song Sunday when Jordan was here by Brad Paisley called Little Moments...we laughed so hard listening to it as it describes all those little moments we don't realize are so important and just how much a lifetime is truly made up of very precious little moments. 

Praising Him for the wonderful gift of marriage!

Rachelle :)