#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 :)