Thursday, May 29, 2014

Journey to a Diagnosis

I say journey because that's truly what it was.  There were so many events leading up to our diagnosis that I want to remember.  We've seen God's hand all along the way, and I don't want to forget that! So...this may be a little lengthy!

  We've had several times that we've considered the Lyme diagnosis.  The first time was when I was going to the Cleveland Clinic last June (2013)  Patrick had been googling many symptoms and had come across a website about Lyme.  I mentioned to the doctor I was seeing that day that happened to be a Cardiovascular surgeon, that we wanted to be tested for Lyme.  She said sure, she just need to figure out which test to order because there are many to choose from.  After about 3 days, she decided which to order and I was off to the lab.  Our hopes were once again "up" that we were on the right track.  But, as you know, the result was negative. 

 When I saw the Infection Disease Doctor about two months later at the Mayo Clinic (by this time Patrick was by my side), we once again mentioned the idea of Lyme and that we heard there can be a lot of false negatives with the test that was ordered.  The doctor said, "You've had a negative test, I won't visit this idea any further."  So, that closed the idea of Lyme at Mayo.  And we didn't pursue this idea any further thinking that Mayo knew best. 

 About a month ago I came across a blog (I have no idea of how I got there) where the lady mentioned she had Lyme disease.  Her symptoms were very similar to mine!  It was also the same week of seeing my new doctor that was going to try Vitamin IV Bags to build up my immune system.  When we mentioned to him the idea of Lyme and showed him my negative test result, he said, "The test you had is very unrealiable.  You really need to have a Western Blot."

  When Patrick and I went home and researched the cost for this test, we were shocked! We had already met our deductible with our insurance and at that time were very close to our out-of-pocket as well.  The thought of more expenses that might not be covered by insurance was pretty discouraging.  We didn't decide anything together, we just really didn't talk about the idea of testing again for several days.  On a Saturday morning as I was praying, I asked the Lord, "If it's  your will for us to spend this money on this test, please put it on Patrick's heart.  Have him know we need to move forward in this."  So, I left it at that.  Sunday morning I didn't feel well.  I had to stay home from church.  When Patrick came home he said that a dear man had pulled him aside at church that morning.  He was so thoughtful and said that he and his wife somehow came across a Youtube video.  For some reason they watched the whole lengthy production and at the end both looked at each other and said, "This is what Kami has!"  It was Lyme Diesease.  Patrick said, "Kam, order the test.  It doesn't matter how much it costs."  Wow!  What a direct answer to prayer!!  I started crying right away and told Patrick what I had prayed the day before!  

The day of receiving my diagnosis, we were very nervous.  Joshua was concerned we had gotten our hopes up again.  He was right.  As we walked into the office, I saw the results on the nurse's folder.  As she looked them through, I knew I saw positive on top.  I gave Patrick a secret thumbs up.  He gave me a look...just wait to get your hopes up!  The doctor came in and sat by us to show us all the results.  Tears were in both of our eyes.  We were so thankful to have an answer!  As I thanked the doctor, he warned me of the road ahead to treatment.  I've had this way to long to just have 2 weeks of oral antibiotics.  He said he could start some treatments that might help, but I really need to see a doctor that specializes in Lyme.  He said this is an illness that can be very frustrating to the patient as well as the doctor.  Every treatment responds differently to every patient.  Then, he gave us a big group hug.  I'm so thankful for our doctor!

We had told the kiddos that if we had a positive then we were going to celebrate with chocolate cake.  So, on the way home we bought cake, crawfish and crablegs.  Celebration here we come!   As I got out of the car with a cake, all 6 of mine were outside. The older ones saw the cake and looked at me skeptically.  They were so thrilled when we told them it's a Yes!

So there is a road ahead of us on this journey.  But, God's hand has been guiding all the way.  Thank you Lord!

Tuesday, May 27, 2014

It's Official! We have a diagnosis!!!!

t's Official...We have a diagnosis!!!

Yes, we do!   The test results came back overwhelmingly positive forLYME's disease!!! 

(A Post from Patrick)

Kami's test results came back showing positive results in 5 of the 10 areas screened for Lyme Disease.  In the doctor's own words, "You most definitely have a highly active infection of Lyme Disease...and yes, this is the reason for all of your symptoms and problems!"  Then he gave us a group hug!

This has been a long road and one filled with tests, trials and even tears.  Yet, we have seen our mighty Father work throughout all of this!  God's grace has sustained us and we look forward to what He is now doing in our lives.

We will know more about the course of treatment in the next week or so, but for now, we just wanted to share our praise with you...
Thank you for continuing to pray for our family!!!

This could be the week....A Post from Patrick

During our "medical" adventures over the past several months, we have traversed the up & down emotions of having our 'hopes up' that a diagnosis was just around the corner.  But only to be disappointed that all results have come back negative again.  Please don't misunderstand, we praised the Lord for every result, especially those results that said, "There is no cancer!"   

But some of the potential illnesses seemed to fit the pattern...the symptoms...and were treatable!  So, when the doctor would mention one of these illnesses and that he ordered a test to identify this possible illness, we secretly became excited....hopeful...planning our future around this diagnosis and the thought that my wife would soon be out of pain and full of strength & energy.

We are currently on the threshold of having to make a major decision as our 1-year medical furlough's end looms just around the corner.  We are fully confident that our God is in perfect control, knowing that He will place us exactly where He wants us to be... Ecc 3:11 "He hath made every thing beautiful in his time..."

This week, I have to admit, we once again find ourselves with our "hopes up" ...Is this the week that we get a name for this "mystery" illness?  Is this the week that we can begin to get Kami the medication that will place her on the road to recovery?  Is this the week that God shows us His perfect will for our future endeavors?  

Please be in prayer with us...for this is the week that the results come back for Lyme's disease.

Tuesday, May 20, 2014

Graduation Cake and Fun

 After the graduation ceremony, we headed over to the fellowship hall for cake and fellowship.  Josh was so glad the Macenas's were there.  They were Josh's Sunday School teachers in 3rd and 4th grade.  Josh loves Uncle Nick and Aunt Linda!
 My sister Tab and her husband Mark set up a Chocolate Fountain.  That was a lot of work!  But, it was pretty popular that night!  And after snapping a few pictures, I hung out around the table for a bit, too.  I had to sample everything, you know!

The sisters of the graduates worked the kitchen.  They cut cake and poured drinks.  It was so sweet of them!

 When did these 3 become men?

 Cousin  fun.  I sure do love these kids!!

 Congrats again to my Joshua!!!

Graduation Ceremony

 Everything went wonderful with the ceremony for Josh's Graduation.  My sister set up the front table.  I love how it looked!
 In the fellowship hall we set up a table with Josh's "stuff"  It was fun deciding what to put on the table.  There were several of Josh's senior pictures in frames.  And his acceptance letter to Golden State was framed as well.  We also put out his Bible, his Calvin and Hobbes collection, his varsity letter from playing football at Emmanuel, his St. Barths house he built, his basketball jersey from 1st grade, his Winnie the Pooh and Tigger that were his favorites when he was a baby, his quilt, his coonskin cap, his harlem globe trotter ball, and his 2 albums.  He's very diversified! :o)
 There were 4 homeschoolers that graduated together.  It made it very special to be in the ceremony all together.  And one of them is Josh's bestfriend, Noah, so that made it even more memorable for Josh.
 Our Pastor is wonderful at ceremonies.  He knows how to make things important, yet relaxing at the same time.  We started with prayer and the Pledge of Allegiance.
 Then, it was time for Pomp and Circumstance.  That song always gets to me!
 Then, each student had their allotted time.  During that time Pastor read a small biography of the student, Bro. Stoudt led in the student's favorite hymn....
 Brenna played for Josh's hymn: I Believe in Miracles.
 Then, Josh gave his speech.  It was so good!  I love his preacher heart.
 My niece Sarah was our photographer for the ceremony.  She did excellent and really captured the moment!  I love this shot of our row during Josh's speech.  You can even look all the way down and see Jonathan, Logan and Isaiah (3 of my nephews)  Josh had lots of proud family there!  Then, each student showed their slideshow.  Patrick and I had fun narrowing down which photos to use to fit in a 3 minute song.  Not an easy thing to do!  Josh wanted the song to be, "God's Been Good"  It was perfect!
 Our Youth Pastor, Joe Calger, gave the "Charge" to the graduates.  He did a great job!
 Then, it was time for the diploma, given to Josh by his Daddy.

 Then, while telling him how proud I was of him, I turned his tassel.  I guess that means it's official.  My boy is a graduate.

 Congratulations Class of 2014!

Graduation Day

 Graduation Day was fabulous!  The Lord really blessed...with weather, with health, with everything going smoothly!  I figured since we were all going to be dressed and ready that we should snap some family photos.  My Mom was a wonderful photographer ....

 ....and my sister Tay was the crazy one to make us smile!  Although from this pic it looks like she was giving Micah some attention in between shots.  He loves his Aunt Tay!

 Then, it was time for some pictures with Josh's cap and gown on.  As I laid out his cap and gown that morning on his bed, the tears started to flow.  I can't believe this day is here! So, to see him come out in his cap and gown was pretty emotional, but so exciting, too!

 One proud Daddy.  I'm so thankful for the relationship Patrick and Josh have.  They are so much alike in some ways, but yet Josh has so much of my personality, too.  They work together so good and have a love for the same things.
 When my Mom snapped this picture Josh said, "In 4 years it will be this same picture, but probably it will be my wife hugging me instead. "  Hhmm, not sure how I think about that! :o)

 My sweet Mom.  She gives up her time so willingly for me.  She captured some good pictures for us!
 And Logan and Chloe helped with getting us to smile, too!
 Josh with his Grandma and Grandpa.
Josh with his Grammy and Uncle Marc.

Such a bittersweet time!  A little saddness as we remember our yesterdays, yet so much excitement as we look to the future!
Josh's invitation said it well.  "As we celebrate the past and embrace the future."
Congratulations Josh!!

Pictures from the Graduation ceremony to come soon!

Saturday, May 17, 2014

A Day Worked For

 Today is the day.  A day that Joshua has worked for.  Today he graduates!
 When I first held my bundle of joy, I did the typical new parent stuff.  I looked at his cute little nose, thought he had the perfect amount of hair, and counted his fingers and toes.
 Then, the awesome responsibility that was just placed in my arms hit me.  I am this precious one's Momma.  I get to be the one to raise him.  A feeling of being scared to death, and thankfulness hit me at the same time.
 I didn't want to fail.  I begged God to help me be the Momma He wants me to be.  The overwhelming feeling of love for my baby becoming my driving force.  Having an amazing husband, and then a son for us to raise, made me feel like the happiest woman on earth. And I had an incredible purpose.  Being a wife and Momma is the best job ever!
 Then, I thought of the milestones that would be reached in my baby's life.  Crawling, walking, going to school, learning to read,and the day of his salvation.  And then, of course, I briefly thought about his graduation.  But, in my mind I thought, "Oh that's so far away!"
 Well, that day is here.  I milestone reached in my Joshua's life.
 To say that Patrick and I are proud of our Josh is such an understatement.  We are so thankful for our boy.
 So, pray for me tonight.  I may be pretty weepy.  But, not because I'm sad.  But because I'm so happy for our Josh.   I love you my son!