Do Not Be Shaken

My fellow prayer warriors. I am trying hard not to be discouraged, we did not get the news today we were hoping for. Nathan kidney functions has decreased instead of improved. They are concerned that his function has not improved with time. They know the transplant process will have some amount of permanent kidney damage. We will have to wait until he is 2 to know the extent of the damage. They also found a gall stone in the renal ultrasound. This is probably due to being IV fed for 8 months. We have an appointment for a consult to find out what the path forward will be. They will not let us try a rapid wean again after what happened last week with the pump breaking. There are many other things they will be looking at and we have lots of more doctor appointments. It is challenging to get the time off work.

I am struggling. I know the the transplant process takes time and you must be patient. It is such an endurance test. The chemo they had to use is very, very toxic. Although the transplant itself has gone well so far, we are fighting so many side effects.

Please continue to pray for strength for our family, for Nathan to be healed, and for Nathan's brother Isaac. What a hero he has been too through this whole journey.
God was telling me as the doctors were telling me all of this that He is in control. He has protected Nathan over and over again. He has been faithful!

Here is the scripture God put on my heart when Nathan was diagnosed. So I must put my trust in the Lord. I will not just say these words, but Go to God as my source. He is my HOPE!

"Yes, my soul, find rest in God; my hope comes from him. Truly he is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge." Psalm 62:5-7

God's Protection

What a day. . .  Not the sort of day I want more of.  We had a HUGE scare this morning.
 
We had an appointment at Children's Mercy this morning for weight check and renal ultrasound. He was very sleepy when we woke him up. He did not want to stay awake. He slept all the way to CMH. By then I knew something wasn't right.   Our Nanny was with us, I told her my "Mom-Dar" was going off.  I got him out of the car he still wouldn't wake up. I went straight to HEMOC clinic. They could not get him to respond. They had to call a rapid response team.  We found out later, his blood sugar was 33. At first they didn't have answers. They had told me no more rapid wean. They are running more tests. Thank you God that we were at the hospital at just the right time. Thank you Jesus that Nichole Masters was with me, Shawn Walker had to leave on a business trip today. I can't imagine how hard it was for Shawn to leave.  My mom was on her way here so she can stay with Nathan tonight and tomorrow while I have to work. It was scary, but God provided in so many ways.

I had discussed with the Dr.s the possibility that his pump may have malfunctioned. I noticed before I left this morning that there was no fluid in the tube. That is weird because even if you disconnect, the tubing is still filled. So when I got home tonight, I checked his room. The floor was soaked, after 12 hours! I turned the pump on and the pediasure was streaming out of the case that regulates flow. Happy nothing is wrong with Nathan, very upset that a faulty piece of equipment could have killed my son. . . So he went 18 hours without any food. My poor baby. . .

 Thank you God for protecting my son in so many ways today.  He protected my job, and provided in amazing ways before I even knew I had a need.  Thankful my baby is okay.

Eat Nathan Eat!!

The weening has not gone as well as I expected. .. .

Friday was somewhat discouraging. I was hoping that he would get hungry and eat on the weening process. He put more things in his mouth, but would not eat. Keep praying with us! God please help my Nathan get hungry and eat. They will only let us do the rapid ween process until he loses 10% of his weight or 2.4 pounds.

Today was a good day with the boys.  I am teaching Isaac how to read, and we practiced site words.  He never ceases to amaze me.  We also made blue chocolate chip cookies with M&Ms.  Chef Isaac called the Wacky Walker cookies.  He still loves his music.  I love to hear his sweet voice sing.  

Nathan is our little climber in constant motion.  He added a word to his vocabulary today, "WOW!"  I am still working on the feed schedule to try to get it where he will be as hungry as possible.  We will have to go into the hospital twice a week for weight checks while he is weening.   I am almost out of leave, pray for God to provide and make a way, even when I do not see how.

Shawn and I have been blessed with good communication, I am thankful for my partner.  

I have started getting involved in the organization that painted Nathan's shoes.  Peach's Neet Feet.  I will now paint shoes for children who are battling illnesses.  I am so excited.  Shawn has been so supportive, and I am thankful. More to come on that. 

I have not been feeling well the last couple of days.  Please pray that I do not get sick.  

 Nathan still did not eat today. He did put some things in his mouth again. Thank you for standing with us, please continue to keep Nathan in your prayers.  Eat Nathan Eat!!!

Good News

What a big day. I am exhausted. We had two LONG appointments today in different locations.  But, I wanted to let you know you prayers are working! Nathan is now 24 pounds! From January to June of this year he stayed at 17 pounds.  Nathan's liver and kidney function is still not where they want it, but it improved! We are letting start the weaning process tonight! We need more prayers now than ever. Every time you eat, please pray for Nathan to be hungry and eat. We are cutting his calories by 50%. It's called a rapid wean. It is literally a starvation process to get him to learn how to eat. He was IV fed for 8 months, and now he has had a g-tube for 6 months.  He doesn't know what it is like to eat and be hungry.  He will be one grumpy boy.

We also got good news yesterday too! BIG PRAISE REPORT! Nathan got back from the Doctor, the fluid accumulating on his optic nerve is GONE!!!!! Thank you so much for your prayers. Our prayers were heard. We are rejoicing!!! They are suspecting his medication was the cause. They are going to stop the weekly infusions (YAY!!!!).  We do the infusions, and I hate having to stick Nathan with needles.  They will monitor his immune system levels and we will give it as needed.  Praise the Lord.  Our God is faithful, He is our healer and provider!!!!

Join me in prayer, let's all pray together for Nathan's eating! Our God can perform miracles, look what he already done. God is SO GOOD. Thank you!!!!

Milestones!!!

Exciting milestones tonight!!! 
I took Isaac to his first swimming lessons, he was such a big boy!  He went without Mommy into his class.  He's had bad separation anxiety, so this was a big deal.

Tonight Nathan actually had 4 bites of a banana!!  YAY Nathan.  During Nathan's transplant he got bad mucositis.  It's caused from the chemo, it  leaves painful open sores down his GI tract.  Since then he's not eaten more than 10% of his caloric needs.  When the g-tube was put in, he basically stopped eating.  He takes about 3 to 5 ounces of water a day by mouth. The little things we take for granted is such a big victory for us. 

Nathan does not like things in his mouth.  We've had lots of therapy for this.  Tonight he let me brush his teeth with a toothbrush for the first time.  He even open his mouth for me!

Tomorrow is a big day.  We have a follow up test with the ophthalmologist to look at the fluid they found a couple of weeks ago accumulating on the optic nerve of his right eye.  Pray for God to completely heal his eye.  The doctors believe this could be caused from his medications.  They have had us stop his weekly infusions.  That was the plus side. We do weekly infusions to supplement his immune system.  I HATE needles, but I HATE  even more having to stick my son with needles.  WE can do ALL things through Christ who strengthens us.

Thank you again for your prayers.

Frusterated?

Its been a frustrating day at work (I work full time). Let me encourage you, because I needed it today. Be thankful. In the most frustrating times, when you are angry or when your heart hurt so much, God is there.

We have a nightly routine in our house. My boys like to "family dance". We have a kids worship CD. There is a song, "God is always with us". The lyrics say,
"He is always with us, every up and down. He will never leave us, he’ll always be around. He’s the one, the one we can trust God will always be with us, God will always be with us"

Tonight I am thankful for our family and that we are together. . . The next song was slow. Our family stood in a circle holding hands, swaying back and forth. Next I scooped Isaac up in my arms, and we slow danced. He laid his head on my shoulder as we swayed back and forth (and then a fun dip to get giggles). I am thankful for that moment.

Start counting out everything you have to be thankful for. We having air to breathe, we are able to see, and have places to live and water to drink. God has even blessed us far beyond that.

There, in the presence of the LORD your God, you and your families shall eat and shall rejoice in everything you have put your hand to, because the LORD your God has blessed you.
Deuteronomy 12:7

May you be blessed by the LORD, the Maker of heaven and earth.
Psalm 115:15

Thanks and Giving

A wonderful praise report.  Thank you for your prayers for me and Isaac.  Your prayers for are starting to be answered.  Thank you for taking time from your busy day to think of us and stand with us in prayer.  That is not taken lightly.  There is power in prayer, and we are so thankful.  There are so many times I was so over whelmed and exhausted I could not even pray.  I know it was your prayers that carried us through.  God was still working in those times.

Its been an interesting few days. . .   The Lord says,

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  Romans 8:28

First, on Saturday I was blessed with a date night with my boys.  I took the boys out to eat and swimming.  As we were driving Isaac said, "Mom, look at that fancy hot rod.  I've never seen one like that before."  Such a grown up statement from a little boy.  I had to laugh because it was some car painted  with a picture of money to advertise cash for gold.  It was one of those moments that I just wanted to squeeze him.  He was so cute at dinner.  He had his first Shirley Temple.  He was so excited about the cherrries and the bottomless fries.  I was just so thankful to be with both of them.  

Swimming was fun.  A little bit of a challenge with one adult, but well worth it.  Isaac was much more daring in the water.  He was such a good boy, and helpful.  I would take Nathan to the top of the slide.  Isaac would hold him until I got to the bottom to catch him.  Nathan would have a giggle and a huge dimpled grin, and Isaac would laugh as he came down next.  I would hold one of Nathan's hands and he would jump from the side of the pool into my arms and squeal.  That night he actually let me read him a story and snuggle in bed with him.

On Sunday we went to church as a family.  I was contemplated not going because of all the bugs going around, but I really wanted to be consistent in going to church.  That is one thing my Mom instilled in me, and I think it is very important.  Even on the days that I don't feel like going, I am always glad I did. 

Sunday night Isaac woke up asking me to snuggle with him.  That is not normal.  I got him to bed, and he woke up two more times.   I could tell he was getting sick even though he did not have a fever yet.  He kept saying his tummy hurt.  The third time, I had to go to work so I brought him in bed with us.  I told Shawn he was sick. I put the towels down underneath him, and not even a few minutes later, he says I don't want to throw up on the towel.  This was mommy code for I am going to throw up.  I got off early and by the time I came home, high fever, and more getting sick.  But God used this time for me to be with my Isaac.  Shawn stayed down stairs with Nathan, and I got to spend the whole day and night with Isaac.  God used Isaac being sick as an opportunity for me to love and nurture my little boy.  I am so thankful for that time.  

Unfortunately this virus is very contagious, and now I am getting sick . . . again.  Please pray for quick healing and for protection for Nathan and Shawn.

God has laid on my heart to look for opportunities to give, and to give generously.  There are so many with great needs.  He will meet our needs when the time comes.  He has always been faithful to provide for our needs, and I am so thankful.  As we have needs in the future, I am confident the Lord will continue to provide. I am continuing to pray that the Lord will burden our hearts in how to be obedient through giving.  I am very excited about a possible opportunity to give with my creative abilities to bless kids with life threatening illnesses.  More to come if it works out.

Give generously to them and do so without a grudging heart; then because of this the LORD your God will bless you in all your work and in everything you put your hand to.
Deutoronomy 15:10

I find that our trials are easier to go through when we don't focus on ourselves, but search out the needs of others and are obedient to what the Lord is calling us to do.

Have a blessed New Year!!!