Day 19

Good morning, prayer warriors! For those of you that have not met my sweet boy, I am sorry. Seton is definitely God’s most precious gift! Yes, I am a little biased but he is mine! Seton has taught me so much in such a short amount of time! Even though I have not seen him smile yet, he makes me smile every day. In just a few days he will be 11 months old! I can not believe it! I thank God for this gift he has given me and every day that I get to spend with him. He is so small but has impacted so many people’s lives!

Just to give you all a few statistics from our blog we have had 73,536 page views from 10 different countries. It amazes me every day when I look at that number. Seton has no idea how big this world is, and yet God is using him to reach this world! 

Thank you all for praying for my boy, and sharing this blog with others. We have anywhere from 85 -789 views on each post. We would not be reaching that many people and having that many people pray for our boy without YOU…Those of you who have shared our blog with others, and those of you who come back everyday to see what’s new in Seton’s world.

This week is Feeding Tube Awareness Week. So today I want to pray for Seton and all the other people that are fed by a feeding tube, you would not believe the number of tubies (tube fed people). It is definitely not an easy life style, but it has saved the life of many and improved the life for many! You can go to the Feeding Tube Awareness website www.feedingtubeawareness.org and read more if you would like.

The skin around Seton’s button is still red and painful. He is not in as much pain as he was this weekend so that is good news. We are on day 4 of the new oral medication, hoping that, along with the prayers will clear it up!

I hope you all have a wonderful week!

Blessing to you,

~Shawna~

⁴ Show me your ways, LORD,
   teach me your paths.
⁵ Guide me in your truth and teach me,
   for you are God my Savior,
   and my hope is in you all day long.

Psalms 25:4-5  

Day 18

Today is MONDAY…my day with my boy! I love Mondays, as you all know.

I want to pray for something that I have had a hard time asking God for... It is no secret that Seton’s skull is not properly formed or aligned. All of his skull bones are there, they are just overlapping because his brain never grew and pushed them out. So his head is hard and he does not have a soft spot like most babies.  

I love his wrinkled little head! It is a part of what makes him Seton! t I know that people and kids are mean. I also know that God made him different for a reason…this is why I struggle with this topic. Life is hard, especially when you are different than the other kids around you. When you were little I am sure you heard (or said it your self) ‘Sticks and stones can break my bones but, words will never hurt me.’ The truth is when you are little (and as a adult) everything can hurt you and you have to learn how to have a strong spirit, and know that God made you exactly how you are supposed to be. In His eyes you are beautiful and perfect! Seton is probably strong enough to handle being different, I just don’t know if his momma is…

As you can see I go back and forth with this prayer request. I would like to pray that Seton's skull bones will properly align, giving his brain room to grow, and that God will give us all the strength to not let words hurt us and the ability to respond to hurtful words with grace.  

~Shawna~

13 For you created my inmost being;
   you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.
15 My frame was not hidden from you
   when I was made in the secret place,
   when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
   all the days ordained for me were written in your book
   before one of them came to be.
17 How precious to me are your thoughts, God!
   How vast is the sum of them!
18 Were I to count them,
   they would outnumber the grains of sand—
   when I awake, I am still with you.

Psalm 139:13-18

Day 17

Today I want to pray specifically for Seton’s eyes and ears. Dr. H’s comment about knowing that the glasses are working we just don’t know what gets through to the brain, really got me thinking about them the past two days. (By the way… Seton does not wear glasses; Dr. H was referring to his eyes as glasses.)  

We are going to pray for all the cranial nerves and the pathways from his eyes and his ears. Pray that they are properly connected and that all information can pass freely, without interruption. Seton loves to watch things that light up and sing, and we pray that he truly sees and hears everything around him.

Will you also pray for his feeding button, it has been really bothering him last night and early this morning. When he woke up at 3:30am, he was screaming and trying to pull his legs to his tummy; and his button was bleeding (that happens with this infection, I guess). I had to pin him down and rock him back to sleep. He woke up at 6:30 doing the same thing…

Thanks as always! 

~Shawna~

¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 

2 Corinthinans 8:16-18

Day 16

Good Morning! I will give you all an update from the doctor’s office then and the prayer request for the day.

Seton weighs 17lbs 13.2oz and is 28in long.

Button Care—We started him on a different anti-fungal medication for the infection around his button; this one is an oral medication, that will clear it from the inside out.

Phenobarbital—We are going to have blood work done again to check his Phenobarbital levels and have another EEG done to check his brain’s seizure activity. Those are both secheduled for mid- March, then we will meet with Dr. H again to discuss the results.

Feeding—We did not get to talk about a blenderized diet…my head was not in the right place at the right time and I did not ask the right questions. We are however going to start him on some rice cereal (made with water); and see if he will eat it with a spoon in his mouth. Dr. Habersang did say that it is apparent that Seton is swallowing because he sounded "clear" and teething causes drooling, which he was not doing. SO YAY FOR THAT! I think that is the first time Dr. H actually recognized that he can swallow.

Sight and Hearing test—Dr. H said there was no reason to check either because we know that they both work. We know that he can hear and turns his head toward noise, we also know that he can see because he stares at things. Dr. H said it this way, "We know that the glasses are working we just do not know what it getting through to the other side" (his brain).  

As most of you know this is not the season you want to be taking your kiddos to the doctor unless they are S. I. C. K. so what was the waiting room full of yesterday – you guessed it sick kids and sick parents! (That is why my head was not in the right place… I am a bit of a germ-a-phobe.) So today we are going to pray for God’s protection over Seton that he keeps him safe from all the illnesses that were in that room yesterday. We brought him home, changed his clothes, washed his face and hands, and did the same for ourselves.

Thank you for all your prayers again, 34 more days left!

~Shawna~

²⁴ “‘“The LORD bless you
   and keep you;
²⁵ the LORD make his face shine on you
   and be gracious to you;
²⁶ the LORD turn his face toward you
   and give you peace.”’

Numbers 6:24-26

Day 15

Doctor Day – we are headed to see Dr. H this morning so I am getting an early start on my post today.

Today I want to pray over Seton’s lungs, he seems to be having a difficult time catching his breath after coughing this morning. His color stayed pink, he just seemed to be gasping for air after a coughing fit (which happened every 10 minutes between 5 and 6am). Also this morning, every time he yawns something is bothering him and he cries or whines…I am not sure if it is his teeth coming in, the skin hurting around his button or something entirely different…so of course I am no help in soothing his pain.

At the doctor today we are going to discuss several things as Seton quickly reaches ONE YEAR OLD! We want to start him on some real food, which will mean a blenderized diet through his feeding tube but also maybe some baby food by mouth, yay! This means more work for me (which I will gladly take) trying to calculate calories to make sure he gets enough food and the right amount of nutrients (good thing I have a little experience in that area J)

We will also discuss allergy testing, so that we don’t feed him something he is allergic too. We sure don’t need to worry about that when we try new foods. Dr. H will also check Seton’s button again and the skin around it to see if we need to try something different to get rid of that silly infection that doesn’t want to go away.

Then we we are all done at Dr. H's office Seton will see his speech therapist, she will be trying to bottle feed him today…we may also try some milk on a spoon.  

Thanks again for all your prayers! Have a wonderful weekend.

 By the way it is now 7:15am and Seton has not coughed, yawned or whined in 45 minutes. - GOD IS AMAZING! 

~Shawna~

“Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise.”

Jeremiah 17: 14

Day 14

I told you all yesterday that Seton is currently on 3 medications. Today we are going to pray that his body no longer needs the Phenobarbital, the medicine for his seizures. Phenobarbital works to slow the activity of your brain and nervous system. He has not had any seizures since that very scary day, June 29^th -- which is an answered prayer! We started him on the Phenobarbital the following evening, June 30^th; he has been taking the same dose since he was 3.5 months old. Since he has not had any more seizures I would assume that the dosage he is getting works, or that he does not need it anymore. We get a blood test every 3-6 months to test the Phenobarbital levels in his blood and I guess that determines if his body it using it. I know the side effects of this drug can not be good for Seton…not good for anyone really.

I am thankful for the medical staff that Seton has working for him and I was very thankful for the Phenobarbital that evening in June. I would like to get to know my son without any medication and see if he is a different child, he has been on some sort of medicine since he was a week old, maybe a few days old, time really did not matter much while Seton was in the NICU.

We go see Dr. Habersang tomorrow morning…I am hopeful that he will recommend decreasing the Phenobarbital or another blood test to check his levels. We will pray for other topics of his appointment tomorrow.

Have a blessed Thursday everyone!

Here is the picture of his favorite position (from Day 12) that I forgot to post yesterday.

He was watching Elmo and his puppy

 The tube socks in the picture are full of rice and we use them to position him or keep him in a certain position. 

~Shawna~

The LORD will guide you always;
   he will satisfy your needs in a 

     sun-scorched land
   and will strengthen your frame.
You will be like a well-watered garden,
   like a spring whose waters never fail.

Isaiah 58:11

Day 13

Since Seton was born he has been on a list of medications, including pain killers and an iron supplement. Now he only takes 3 on a regular basis: Xopenex for his breathing treatments, Phenobarbital for seizures and Baclofen for spasticity. Today we are going to pray for his spasticity, so that he can stop taking the Baclofen. He gets a small dose 3 times a day, with a 4^th dose if needed to help him sleep. It is a muscle relaxer that works at the level of his spinal cord. So this is my theory…It would be hard to teach/ train your muscles how work properly if you are always trying to relax them??

Monday night Seton was awake from 2:00am-5:00am. He was a little fussy, but very restless (or jittery). I really did not want to give him his extra dose of Baclofen…I wanted God to do it. So I leaned over held on to his jerking legs with one hand and put my other hand on his head and prayed for God to calm him down and relax his muscles. While praying over Seton, his legs began to relax and he went right to sleep. Seton slept great from 5:00am-8:30am.

I tell you that story because I want to get him off all his medications. I know God can relax Seton’s muscles when they need to be relaxed and help him to use them properly when he needs them. So that is what we are praying for today, his spasticity to stop so that we are able to stop giving him the Baclofen.

~Shawna~

¹³ Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. ¹⁴ Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. ¹⁵ And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. ¹⁶ Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective.

James 5:13-16