For Emily

Recovery

Stephenie is very slowly getting better.  In the past she has bounced back to her normal self ( in medical terms this is called "base-line").  She is not there yet.  She has been very fussy, which is not normal either.  Nearest I can figure she is having belly pain.  She also has some sort of cold, very stuffy nose with lots of coughing.

Elizabeth is also coughing and complaining of a sore throat.  I think Stephe has what Elizabeth is getting over.  In a house full of CF kids coughs are no small matter, especially when accompanied by fatigue. 

Please pray for us.  Thank you

THANK YOU

I wanted to thank everyone for praying for us.  I also wanted to say a public thank you to Toni, who took my children out for the day.  It helped them get their minds off missing Stephenie and me.  Thank You Toni, they had a wonderful time.  I even have some pictures to share.

The Day Begins

On Top of the World

The Bridge

Having Fun

I Love my Kids!

Sticks and Stones

Home Again!

Stephenie and I have arrived home safely. God bless you. Thank you for praying for us and for all your support.

Teresa 

Home Sweet Home

We are packing up and going home!

Still Waiting

The kidney doctor came in and was pleased with Stephenie's progress. He has no more treatments for her.
We are now waiting for the pediatric hospitalist (doctor at the hospital in charge of pediatric unit) to come assess Stephenie. I am hopeful that she will release Stephenie to go home.
Stephenie is on her normal home routine, but she has been sleeping all day. Stephenie is not fully recovered but I am confident that she can continue recovery at home. We will see if the doctor agrees. If she does we should be able to go home tonight. If not we wait.

More Waiting

Stephenie's kidney doctor still has not come in today. We are waiting for his assessment before we decide on what to do next. More test? maybe more treatment? Go home? or maybe more wait and see.
I have learned to trust God and be confident in Him during these times of waiting. This is when I enter into His Rest.
Teresa

History

I will attempt to give an overview of the last 8 years so that you, the reader, can know Stephenie's medical history.

She was born in Feb 2001, a full term 6 pound baby girl. Her hands and feet were not straight and she was sent off to her first specialist. We went to Children's Hospital in Birmingham, Alabama. I do not remember the medical term they used but I was assured that they could be corrected with braced. There was no medical condition connected with these abnormalities.

When Stephe went to her 4 month check up Mark and I were concerned that Stephenie was not growing (eating) properly. We talked with her doctor about our concerns. Stephenie had doubled her birth weight, which is the mile marker the doctor went by, so he said he would keep a close eye on her. We explained what we called "episodes" to him and she began treatment for GERDS.

At this point in our lives Mark was working heavy construction, building tanks. He would travel from place to place building and repairing these huge tanks. When Stephenie was a month or two old we put everything in storage and started traveling with Mark. The family was together and we loved it. Elizabeth was 5, Sarah was 4 and Zech was 2.

About 2 weeks after her 4 mo. checkup we were on our way back to the doctor. We were all in Georgia, with Mark, I forget the name of the town. It was Friday morning. I remember because Mark had Friday off and we waited to go in until Friday morning so the whole family could stay together. We only had one car and we had to go back to Jasper, Alabama where Stephe's doc was. We made this decision on Thursday. Stephenie was not eating properly. The day before she had only drank 3 bottles. We knew that if she did not improve on her fluid intake we would need to take her in to the doctor.
Stephenie only drank 2 bottles on Thursday, so we headed out early so we could get to the doctors office first thing in the am. She would wake up and start to drink a bottle. Shortly after she started to drink she would start screeming ( she had mostly stopped crying by now and she would half cry half screem) and her little body would shiver (resembling when you have a burst of cold come over you and your whole body does a mini convultion). We called these "episodes" and they were getting worse and more frequent. After an "episode" Stephenie would fall asleep for hours, and we could not wake her up. So to the doctor we went.
I knew the receptionist would ask why we thought she needed to come in for an "emergency" visit. I just told her Stephenie was not eating propperly and had only drank 2 bottles the day before. They said to bring her in. A little while later her doctor's nurse called us and asked questions. She said she was going to talk to the doctor and would call us back. I remember thinking she might call us back and say it was not urgent enough to bring her in. I was way wrong. When she called back she told us not to come to the doctors office, but to take Stephenie directly to Children's Hospital in Birmingham.
I think it is important to tell you that on the way to the doctor's office I had a faith crisis. Mark and I came to an agreement and we are standing on the promisies of God, and He has given us many to stand on.
We made arragements for Mark's niece to meet us at the hospital and pick up the older three children.
This was the start of questions, tests, waiting, more tests, more questions, and more tests and always more waiting.
To be continued...

Roller Coaster

The first time I went on a roller coaster ride I was 29 or 30. I loved it. This year we took our children to Silverwood Theme Park. I went on Panic Plunge. My kids think it was great that I went on it. I found that I'm getting too old for roller coaster rides and plunges.

Our roller coaster ride is starting here at the hospital too. We did not get to go home today. Stephenie is retaining fluids and the docs are trying to figure out how to help her. They think it might have to do with the low albumin levels.

More waiting.

Isaiah 40
28 Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.
29 He gives strength to the weary and increases the power of the weak.
30 Even youths grow tired and weary, and young men stumble and fall;
31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Hospital Stay

Here we are again. Stephenie and I are at the hospital. We came in Sunday morning, to the emergency room. They did the usual blood draws, urine sample, and x-rays. The x-rays came back clear. They check her lungs for signs of infection etc. The urine showed a high white blood cell count. She has a UTI (urinary tract infection). The blood tests showed low albumin and it tested positive for an infection. So we waited, and waited some more. I hate waiting. We are waiting to see what kind of blood infection she has. The culture has to grow in the lab so it can be identified.

Did I say I hate waiting? I also am having a hard time with being alone. Not the bit about being in the room without my family around, we all pitch in and do our parts to get through the current circumstances. Hopefully with grace and trust shining through. My hearts desire is that God be glorified in all I do. I'm sure I have failed miserably this visit. I feel alone in the world. Me sitting here waiting with very few people calling to see how she is or if I am OK. Sounds like a pity party I know. I'm sad today because I see Stephenie's health going on a steady downhill (or maybe mountain) slide. Life is on hold right now.

There is a fine line somewhere between being your child's advocate and making sure she is getting propper care and on the other side of the line is being so difficult that the hospital staff hates to come into your room for fear of dealing with the mom. I think I crossed that line this visit. I know that I get overwhelmed with taking care of Stephenie in the hospital. You are probably asking yourself, Doesn't the hospital staff take care of her in the hospital? The nurse has 3 other patients to take care of besides Stephenie. And Stephenie's care is so involved that the nurse's load is just too big. So I know going into the hospital that I am in for long days with little sleep. FYI, Stephenie cannot be left alone. We are on day two and her medication still is not being done right. I have to check it all before they give her anything. I get tired. God help me. I feel I am failing miserably.

I started this blog on Monday. It is now Tuesday. I have spotty access to the computer here and have to stop and start my ramblings. Sometimes it takes three or four attempts to get one paragraph down.

Stephenie's blood test came back positive for staff infection. They say it is not in her blood but probably came from a contaminate on her skin. This is good news and we may get to go home today.

Psalm 5
1 Give ear to my words, O LORD, consider my sighing.
2 Listen to my cry for help, my King and my God, for to you I pray.
3 In the morning, O LORD, you hear my voice; in the morning I lay my requests before you and wait in expectation.

Why Love?

The greatest of these is "Love."

I often wondered why God said the greatest of these is love. I think I now understand in part,why love is the greatest.

When I was younger I used to start my conversations with God by saying, " God if you love me then why...." One day God replied (through His Word) 

 James 1: 5 - 8

If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.  But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind.  That man should not think he will receive anything from the Lord;  he is a double-minded man, unstable in all he does.

I knew He was telling me that I was double-minded.  How was I double-minded?  On one hand I would say I knew God loved me and on the other I would say  "God if ..."  

Once the issue of God's love was settled, I realized I needed to change my question to "God since you love me, would You help me understand where I need to change my thinking?" 

Hope is then kindled because there is intimate knowledge of God and His love.  When a relationship with God is settled on a foundation of love, trust in the Character of God can then bring Peace.  What a wonderful place for the Word of God to birth within us...Faith.

 1 Corinthians 13:13

And now these three remain: faith, hope and love. But the greatest of these is love.

Pictures

Maybe not our best side, but they are fun none the less.  Thank you Donna for the pictures. They were taken today, 17 Sept. 2008.  Isn't technology fun!? 

Proverbs 17:22 (King James Version)

A merry heart doeth good like a medicine

Honor

Today has been a hard one, ok it's been a hard week.  Mark and I have both hurt our backs again.  Usually only one of us is hurting at a time.  So we are in pain, physically.  On top of that I can not find my Synthroid.  I keep it on the counter where I can see it.  It has gotten up and walked away.  Since I don't have a thyroid, I'm a bit nervy right now.  I will have to go buy some more, at $70 a bottle it's a bit spendy to lose.  Our last car broke down, it's the fuel pump. The only car we had that fits Stephenie's wheelchair. This is where one trusts God  and enters into Rest or ???  I'm not sure I want to find out.  I may not make it back. I choose Rest and Peace in the One Who loves me, there is comfort in His arms.  

Stephenie's seizure patterns are changing again.  She had to have Diastat this week.  That is an emergency medication we give her when she has a very long seizure (more than 10 minutes)  or a violent seizure that lasts more than 5 minutes.  Before Diastat some seizures would last more than 1/2 hour.  She has 3 other meds. for seizures control as well as a very regimented diet.  

Before we knew Stephenie was having seizures we would call them "episodes".  She was having seizures when I was pregnant with her, although I didn't know it at the time.  I could feel her moving violently with long periods of stillness afterward, but who knew they were seizures.  If the medications she is on stop working there is nothing left to try or add onto her regiment.  I have a very difficult time watching her go through seizures.

She has been very fussy the last couple of day too.  Tummy pain.  

If I keep going on I will depress myself, not to mention anyone out there who is reading this.

I have been meditating on the thought that "God is Honorable".  He is worthy of honor and He does what is honorably.

Enter into His Rest and find Peace, I do.

1 or 2

I was originally going to make two separate blogs, one for explaining the journey we have been on with our children and life in general (although I find nothing general about our life), and one for explaining the spiritual walk Life has brought us through.  However, I do not know how to separate the two.  So I have decided to just keep one blog.

I suppose this is therapy for me in a sense, but my biggest reason for doing this is to maybe encourage someone else who finds themself going down a similar road.  I have talked with very few people who understand what it is like to have their child diagnosed with an illness or disease that leaves them with no hope of survival. (Most doctors do not tell you that there is hope in God, and there is, Peace and Rest also.)

The words "I understand" help.  There are some things in life that are impossible to explain with words, hard as one may try.  I do not wish "understanding" on anyone, the grief is too much to bear sometimes, but for those of us who do "understand", it helps knowing that there is someone else who understands.  When words fail, understanding comforts.

The second reason I am doing this is to share some Biblical insights.  I am a teacher by nature and I love to share.  I know that I am not perfect so don't take anything I say for granted.  Check out what the Bible has to say for yourself.  My hope is to encourage and build up.  I cannot go through this life of mine without the hope, love and peace that I continue to receive from  my Heavenly Father, the creator of the universe.  I am convinced of His love and I know that God did NOT do this to my children.  God is not the author of death.  He is Life, Love, Peace, and Joy, and I will praise His Name forever.

I wish to share about other topics as well, from all areas of my life.  We are living in exciting times. I believe that the return of Jesus is near, and I love to talk about it, to study the Word, and to learn what others have to share.

Psalm 121:1-2

A Song of Ascents.

 1 I will lift up my eyes to the hills—
         From whence comes my help?
 2 My help comes from the LORD,
         Who made heaven and earth.

Seeing

Why is it that when we see something it makes it more real?

 Yes , this is a rhetorical question.

We, Stephenie, Toni and I, went to the Dr. today.  There are scriptures that I know in my head and believe with every fiber of my being, so why was I shaken today?

My daughter, Stephenie is 7 years old.  She has been diagnosed with microcephally, as well as a myriad of other things.  Someday I will go into our history, but today I decided to jump right in with today.  No trying to tell the whole story, starting from when Stephenie was 4 months old, I just am going to start with today. 

We went to the kidney doctor to get the results of tests we had done two weeks ago.  These tests were just routine blood tests and an ultra sound of her kidney.   The doc said there were no significant changes from last year. I need to tell you he became Stephenies's doc about a year ago.  He also mentioned that she had no kidney stones.  Well, that caught my attention because she has had kidney stones her whole life.  What happened to them?  The doc then showed me her ultra sound. (Aren't computers nifty? All her medical records right at his finger tips.) When compared to last years ultra sound (which I never saw until today) there wasn't a huge change, and you could see the stones she had. However, when compared to the ultra sound she had in 2006 there was a huge difference.  The stones she had in 2006 are lost in the mass of calcium throughout the middle of her kidneys.

I know that Stephenie's health is slowly declining.  I also know that it will take God's Resurrection Power to make her whole, but I was not prepared for the massive amounts of calcium built up in her kidneys.

I need to remind myself of God's Word.  I need to meditate on His promises.  I need to enter into His rest.  I came across this scripture yesterday.  It touches my soul.  Give God all the Glory due His Name and remember that the JOY of the Lord is our strength.

1 Chronicles 16:23-36 (New International Version)

 23 Sing to the LORD, all the earth;

       proclaim his salvation day after day.

 24 Declare his glory among the nations, 
       his marvelous deeds among all peoples.

 25 For great is the LORD and most worthy of praise; 
       he is to be feared above all gods.

 26 For all the gods of the nations are idols, 
       but the LORD made the heavens.

 27 Splendor and majesty are before him; 
       strength and joy in his dwelling place.

 28 Ascribe to the LORD, O families of nations, 
       ascribe to the LORD glory and strength,

 29 ascribe to the LORD the glory due his name. 
       Bring an offering and come before him; 
       worship the LORD in the splendor of his ^[d] holiness.

 30 Tremble before him, all the earth! 
       The world is firmly established; it cannot be moved.

 31 Let the heavens rejoice, let the earth be glad; 
       let them say among the nations, "The LORD reigns!"

 32 Let the sea resound, and all that is in it; 
       let the fields be jubilant, and everything in them!

 33 Then the trees of the forest will sing, 
       they will sing for joy before the LORD, 
       for he comes to judge the earth.

 34 Give thanks to the LORD, for he is good; 
       his love endures forever.

 35 Cry out, "Save us, O God our Savior; 
       gather us and deliver us from the nations, 
       that we may give thanks to your holy name, 
       that we may glory in your praise."

 36 Praise be to the LORD, the God of Israel, 
       from everlasting to everlasting. 
      Then all the people said "Amen" and "Praise the LORD."