Season of Patience

Sorry it has been awhile since I posted.  I have been updating facebook more frequently since it is quicker and more convenient.   Here is Nathan's page is you are interested:

https://www.facebook.com/WereStillRejoicingNathansJourney

This has been a season of patience.  19 months post transplant, and Nathan still is not eating.  I never would have thought.  They didn't exactly prepare us for this.  Then again, every journey is different.  Nathan has had alot of uncommon side effect from the chemotherapy.  Nathan's gallstones are still there, but they are not recommending surgery at this time.  Praise God.  I have been very tired, but the Lord supplies everything I need, and not a moment sooner.  He is still growing me and shaping me.  Through facebook I have been able to connect to alot of other families.  That has been a blessing to not feel so isolated.

Nathan and Isaac are in constant motion.  Isaac just finished two sessions of swimming practice.  Isaac had his first soccer practice last week.  Nathan climbs on everything and is saying so many new words.

This week if you could please pray for Nathan to eat and drink. Also pray for Nathan's gallstones, liver and kidney function to be healed. We have slowly started a blended diet. This means I am replacing one bolus each day of Pediasure with a bolus of real blended food. (A bolus is when we manually feed him with a syringe through his tube. We give him approximately 10 manual boluses each day of food and water. He also gets fed by a pump during nap time and bed time.) I am wanting to replace Pediasure with real healthy food. Up until two weeks ago 100% of his hydration and nutrition was given through his tube. Right now we have cut calories by 15%-20% in the hopes that he will begin to eat. On full feeds, he does not get hungry, and does not want to eat. 

If you have any questions about Nathan's condition, his status, our journey, or our family, please post them and I will answer them in the next post.


Thank you for praying with us.

He is the Healer

It has been a week of ups and downs.  We consulted with many doctors, different experts on a natural remedy for the gall stones.  I immediately started giving him apple juice daily in small amounts.  There is a nutural flush that uses apple juice, olive oil and lemon juice.  The hospital was not recommending us do it.  They said they know the risk of surgery, but they do not know the risk of the flush.  It was hard to believe that they felt more comfortable with putting toxins like cytoxin in his body more than apple juice.  We were leaning toward the flush from all of our research and consulting.

I kept praying that the flush would work when I realized, I was putting my faith in the wrong thing.  It is God who would heal our son.  I started praying for God to heal Nathan and for Him to give us wisdom about what we should do.  The day before we were going to do the flush, he possible passed a couple of stones, so we did not do the flush.  

We had the scan.  Nathan still has gallstones. The doctor had said the only option is surgery. We were still praying that the Lord will provide a miracle.   I was so sad and exhausted. I know God has a plan for Nathan, but this has been such a long journey. I am thankful for all of the prayers the Lord has answered so far, He will continue to carry us. We need prayers that God gives us strength.

The next day, we got good news.  God is answering our prayers. . . in His own timing. Nathan does not need surgery at this time. They determined the stones are not in his liver or ducts, so they will let his gall bladder be for now and closely monitor him. We have another scan in a month. Thank you Jesus! He is good.  To my untrained eye, it looks like the first scan had a large stone.  The other scan had stones, but they were smaller.  They were not able to tell me if the stone had broken up.

I lift up my eyes to the mountains where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip he who watches over you will not slumber. Psalm 121:1-3

We are scheduling many upcoming appointments for Nathan. I made changes to his feed schedule to see if he will eat. The therapist says his chewing pattern has changed. He is eating some bites of string cheese and black beans of all things. He still loves pickels (YUCK). We are still required to do full hydration and feeding through his tube.

A sweet moment yesterday, he started laughing at a movie. It is neat to see him respond to new things and become more aware. He was belly laughing at Ice Age.

He continues to carry us, provide for us. I am still trying to depend on the Lord whatever His will is for our family.   I continue to try to put my faith in the Lord everyday, for He is the one who heals, provides and carries us.  Thank you everyone who is walking this journey with us and praying. 

More Prayers Needed

Isaac had his last swim class and he did great. I was so proud of him.

 

Our day at the hospital was long. . . and we did not get the news we hoped for. They want Nathan to have surgery to get his gallbladder removed. They are worried that his elevated liver counts are due to the gallstones and the risk of a liver infection. This would be very serious for Nathan.
I know what the doctors say, an...d I know what our God can do. He has healed Nathan's liver, heart, infections, optic nerve, and with our prayers, Nathan can pass the gallstone.

We have a detailed scan on February 12th. Please stand in prayer with us that the gallstones will be gone. I trust in God's will, but my prayer is that my baby won't need another surgery.
I am going to make an event for a day of prayer for Nathan on Thursday, February 7th. We can wear blue (Nathan's favorite color) and come together in prayer. Thank you prayer warriors!

 

Another prayer request for my sweet Isaac. It is so hard on him when Mommy is away to be with Nathan. I had promised him a mommy day today after he got home from school yesterday. It was much longer at the hospital than planned. Isaac took it really hard. He told me he stood at the window and screamed for me, but I didn't come. He had a complete melt down last night. It was so hard. Nathan isn't the only one who has had to be brave and strong. My heart breaks. . . .

 

We are also asking for anyone that might want to bless Isaac and Nathan with cards or mail.  Isaac literally proays for mail.  It is a HUGE blessing to them.  Our address is:

1618 SE Boone Trail

Lee's SUmmit, MO 64063 

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!!!!