Walkers down for the count

We are all sick today.  Nathan threw up three times yesterday and barely kept anything down.  He was so restless all last night.  Up until three in the morning he did not slepp more than 15 to 30 minutes consecutively.  He was started to get congested.  Then at about 2am he woke up screaming.  I felt so helpless and scared.  I couldn't tell what was wrong.  With Isaac, I wouldn't have been as worried, I would have been certain it was a cold.  But with Nathan, nothing is normal.  I called the nurse twice.


I have an infection in my tooth and the pain has almost been intolerable all weekend long.  That doesn't make for a happy momma.  My pain medication completely knocks me out, and it doesn't even take the pain away.


Today, we were not feeling very well.  Luckily that made Isaac very snuggly :)  We all laid around today.  I was just thankful to be all together at home.  I love all 3 of my boys so much.  Big thanks to Shawn for doing an awesome job serving all of us today, and taking care of all of us!

Around 4:30 pm, Nathan started spiking a fever.  Dad is still at the ER with him.  We are waiting to hear if he will get admitted.
Your prayers would be appreciated.

Routine . . . to the hosital and back: June & July

Still Catching up June - July 2012
We finally were getting into a routine at home.  It was extremely overwhelming.  We wouldn't get done with all of Nathan's medical routines until 10:00 or 10:30 at night.  I was back to work, and missed my kids so much. We starting to have a bag packed to go to the hospital at all times. 
When he would spike a fever we would have to rush to the hospital.  It meant he had another infection in his blood.  It was very scary.  His heart rate would be over 200.  He needed fluids and the and the antibiotic as soon as possible.  We would hope that it was an infection that could be treated by the antibiotic, and that it wasn't resistant.  It takes two days for the cultures to come back with the exact infection type.  When the antibiotics started working he would actually get sicker as the bacterias was broken down in his body.  We would be in the hospital anywhere from 4 to 14 days with each admission.

God answered another prayer, Shawn and I both still have our jobs.  My work had been amazing, and worked with me to that  point.  Now they wanted me back and I was out of leave.  I couldn't stay with Nathan in the hospital anymore.  It was scary being faced with the possibility of losing my job.  My heart was broken, I was scared.  I felt like the worst mother, I felt so guilty being at work.  I am the one that has invested so much time in overseeing his care, I knew all of the details, all of the history.  Now Shawn had to stay in the hospital with him.  I cried out to God, I wanted to do His will.  I prayed a lot to see if I should stay home, but I carry our insurance.  We did not feel like it was God's will for me to stay home at this time.

It was getting harder and harder for Isaac with each hospital stay.  He would ask me when we were going to be a family again.  My heart broke for him.  This had been emotionally harder for him than even for Nathan.  There were so many to attend to Nathan's needs.  I felt like Isaac was left out, he didn't understand. 
Isaac had also started preschool for the first time.  It was tramatic to say the least.  I admit I cried the first day.  He climbed up me and told me how it made him sad to be there.  It got better, but he would cry starting the night before, the morning of . . . and then would be fine right after I left.

We had a nanny, but she had 2 mission trips, so my Mom and Kayla was filling in the five weeks she was gone.  I loved having my family with us. 

After Nathan got his g tube, he pretty much stopped eating.  It was so hard to get on a routine, we were feeding him basically all day.  The stress of making sure he got the required calories and hydration was beginning to drive me crazy.  I was worried about his kidneys.  Everyday we were under so much pressure, I was just exhausted.  On the plus side, Nathan had started to finally gain weight. 
To be continued. . .

Sometimes We Fall

Nathan is walking!  In just a couple of days he went from taking a few steps at a time to walking all the time.  Now he doesnt want to be held.  If I pick him up I am greeted by this ear piercing shrill.  I hope it can be amusing for everyone else.  I admit is is pretty funny.

Catching up, Going Back Home! May 28, 2012  :
When we left St. Louis at the end of May, Nathan did not have his g tube yet.  He basically hadn't gained any weight in over 6 months.  His hemoglobin level was chronically low, and they were worried his kidneys were not making a hormone that stimulates our body to make red blood cells called EPO.  He was diagnosed with stage 3 kidney failure, meaning his kidneys were working at less than 50%.  He would eat on and off, but never more than about 25% of his caloric needs.

I know you are all very excited to know how he is doing now, and I promise I will get to that.  To truly appreciate all the prayers God has answered I would like to walk you through our journey.

June 2012
His surgery for the g tube was scheduled for the week after we got back to Kansas City.  However, Nathan got sick after being home only a few days with another line infection.  We were admitted to our other new home, Childrens Mercy.  Here he spent his first birthday.  They made it very special.  He got a birthday party from the staff and a cake.  He even had the music therapist come play the guitar.  We stayed in the hospital until the infection was clear and he had three seperate surgical procedures in one day.  He got a new Hickman placed (central line), the g tube was placed, and he got a circumcision.

Fast forward to now.  With Nathan walking, he falls a lot.  He is unsteady on his feet.  I am reminded of my walk with the Lord, and how I have stumbled so many times.  I am clumsy and often fail.  Time and time again, the Lord picks me back up.  He does not grow tired and weary, even though I do so many times.  He is patient, and helps my steps be steady.


The LORD guides our steps, and we never know where he will lead us.
Proverbs 20:24 ERV

His faith is Never ending

It has been awhile since I have posted.  Life has gotten so hectic with Nathans routines it was hard to keep up.  Starting in March, Nathan struggled with infections in his central line that went blood born.  We were in the hospital much of the time from March into July.  Nathan had 6 different line infections, 7 hospital admissions, with two stays in the PICU during this time.  At one point we were only getting 4 to 5 days in between hospital admissions.

We moved back home at the end of May.  It was bitter sweet.  We miss our family in Saint Louis so much.  We are thankful the Lord blessed us with that time.  My heart still aches for them, but we are rejoicing that we were finally home.

Home did not mean normal though.  We could not take Nathan very many places and we were still very isolated from everyone.  Things got very tough emotionally.  The Lord continues to be faithful even when I have not been.  In these dark times, the extent of God's grace has been revealed.  I wish it did not take these trials for us to fully depend on the Lord.  I look forward to sharing with you the work that the Lord is continuing to me as I continue to be perfected in His image.  This is not an easy journey, it has pushed me far beyond anything I thought was possible.  I have not had anything left physically or emotionally.  It only by the strength of the Lord that I have survived. 

Nathan is doing great, in the weeks to come I will share more of this amazing journey.  Much love from the Walkers, we are still rejoicing!

Rejoicing

Our God is good. He is faithful and answers prayers. 

I call on you, my God, for you will answer me; turn your ear to me and hear our prayer.

Psalm 17:6

He has answered our prayer in an amazing way!  We went to the hospital today. Nathan had a follow up with the cardiologist. His heart is now NORMAL! The thickening of the ventricle walls is still on the high side, but it is now within the normal range. There is no fluid around his heart.  He will go off his heart medicine. 

All glory to God, he is good! What a wonderful father, an amazing healer!!!!  Thank you Jesus.

God Answers Prayers

Sorry to delay proclaiming Gods wonderful works:
We found out this wonderful news this week.   Nathan was born with ZERO t-cells, and non-functioning b-cells now has t-cells. At 3 months post transplant, he had some t-cells! 

We got a detailed report this week of his 6 month post transplant study.  We are still waiting for one component of the study to come back, but it is incredible news. 

His 6 month immunology study shows some of the types of t-cells are actually functioning at normal levels! God is good! We thank you for praying with us. We are amazed at how he answers prayers.  I am so thankful.  I am humbled, and amazed at all God has done.  

Just as I had posted outside Nathan's room:

For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory.  Deuteronomy 20:4

All glory to God!

Now, our God, we give you thanks, and praise your glorious name.  

1 Chronicles 29:13

Please continue to pray that he eats and gains weight, and for his kidney function to improve!

Teaching and Learning

I have been trying to get time to post for almost two weeks.  I am so sorry, it is hard to find the time to sit down and collect my thoughts.  There is much to tell.  I will try to post over the next several days to share.

First, I wanted to share of a sweet moments I have shared with my amazing son Isaac.  God has given me the opportunity and challenge to share with him about Jesus.  I have been able to explain that you can ask Jesus in your heart, about how much our heavenly father loves us.  Explaining salvation on a 3 year olds level is very challenging.  I  am trying to explain forgiveness, and what Jesus did for us.  I am thankful for each of these opportunities.  It is a powerful reminder for me.

Isaac is smarter than we think many times.  Last week I told him how Jesus is in our heart, but a few nights ago when we were talking about Jesus and how he was in heaven.  Isaac said he wanted to outside to see him in the sky.  Shawn and I were trying to explain you can't see him.  Then Isaac asked, " I thought Jesus was in my heart".  We had a good laugh.  Our little guy does not miss a beat.

On a more serious note, this has given me the wonderful opportunity to reflect on what Jesus did for us.  I can absorb myself and  focus on the depth of love that our father has for us.  It has also motivated us to read the Bible as a family.  I have also been journaling on the scriptures I have been reading in the Word.  It has been a blessing spending more time reflecting on the Word of God.

Direct my footsteps according to your word; let no sin rule over me. 

Psalm 119:133

Your word is a lamp for my feet, a light on my path. 

Psalm 119:105

I will be more committed to praying consistently for my children, the choices they will make, my husband, and the many changes that will happen when we go back home.  

We have started making tentative plans to go back home at the end of May or the beginning of June.  Please pray we will find the right person to take care of our boys as we can not put Nathan in to daycare.