Day 41

Blood work day! This morning we are taking Seton in to have blood drawn. This is always an experience. Seton is very hard to stick, it is hard to find his veins, and then when they do find it he only gives them a few drops of blood. We gave him some water yesterday & this morning with hopes that it will help. We normally take him to the hospital but since there are some many sick kiddos this time of year…we are going to try a local lab. I will give them a few tries…if they can not get a good stick then off to BSA we go.  Poor guy just doesn’t like giving up his blood. Please pray that his blood draw goes smoothly. He is also tired today because once again he did not sleep well last night; pray that does not affect him this morning at the lab. Also pray for protection from illness if we do end up at the hospital.

I have noticed that over the past few days and weeks that fewer and fewer people are reading each post. Thank you to all of you who continually read and pray for Seton every day (even if you get behind on reading…life gets in the way and we can’t spend our day reading on the internet) Thank you for praying! Some people may have given up on God and his ability to heal Seton. We have not and we will not. We will not give up on God, yes Seton is doing better than his doctors expected, yes he is still alive but I refuse to believe that is all God has for Seton. God sent his son to live on earth so that we could have life and have it to the full, abundantly, satisfying life. (John 10:10)  By his stripes we are healed (Isaiah 53:5) I am standing on those scriptures! God has a bigger plan for Seton’s life, bigger than you or I could ever imagine. God CAN and WILL, fully heal Seton. We just have to be patient and know that God’s timing is not our own timing. Nothing is too big, too hard, or too complex for God. Isn’t that GREAT NEWS!

all snuggled up with his blanket 

~Shawna~

“The thief comes to steal and kill and destroy; I have come that they may have life, and have it to the full.”

John 10:10 (NIV)

 “A thief is only there to steal and kill and destroy. I came so they can have real and eternal life, more and better life than they ever dreamed of”

John 10:10 (MSG) 

Day 40

Day 40 already! I can’t believe that my sweet baby boy is almost ONE! 10 more days! How amazing is our Lord! Last night while Zane was cooking dinner (he does most of the cooking around here, I tend to mess up everything I touch in kitchen - even my oatmeal this morning is too dry J)… So Zane was cooking and I decided to put Seton in his high chair and try to fix his hair a little bit, so I got some water, gel and Seton’s comb and went at it. He really didn’t mind it, which is a good thing because it took me several tries.

Before the hair do ...He tried on his new shades

Look at all those curls

spiked up do...he is not amused

Since he had gel in his hair I knew he needed a bath so after dinner he got a bath. I was done washing him and he usually sits in the warm water and relaxes for a little bit. As I started to pour a cup full of warm water down his left leg he jerked it and crossed it over his right leg (strange movement for him) so I poured the water over his tummy when I realized he wasn’t moving his arms (also strange) So I looked at his eyes and back at his hands and legs his eyes were jumping back and forth and he was a bit unresponsive to my voice. He continued to breathe, was not fully stiff, because I turned his head toward me so I could see his face, and never turned blue like his previous seizures. I started to take him out of the bath and he came out of it and he let out a high pitched scream (like previous seizures) then started crying (like normal when I take him out of the bath). So I do not know what he was doing, it was a very strange 20-30 seconds that felt like 2 hours! Today’s prayer request is for Seton to not have any more of those ‘episodes’. He will have his EEG done in a few weeks and that is to look at his brain activity and take him off his Phenobarbital (seizure medicine) if he no longer needs it.

Thanks for your prayers for my sweet boy!

~Shawna~

⁴ Surely he took up our pain
   and bore our suffering,
yet we considered him punished by God,
   stricken by him, and afflicted.
⁵ But he was pierced for our transgressions,
   he was crushed for our iniquities;
the punishment that brought us peace was on him,
   and by his wounds we are healed.

Isaiah 53:4 -5

Day 39

Good Monday Morning! Today we are going to pray for Seton’s hips.  There are several muscles that attach to the hip bone as well as several nerves that run down around the hip bone. I want to pray for all of this, that he will gain strength in his hips for all leg movements, crawling and walking and that the nerves are able to communicate properly with the brain.

~Shawna~

 “Behold, I am the Lord, the God of all flesh. Is there anything too hard for me?”

Jeremiah 32:27

Day 38

Seton decided not to sleep as well last night…but he is sleeping great now! Zane and his mom split the night last night so that I can get more sleep to get over this cold.

His physical therapist came last Monday and starting working with him on the sit to stand movement to get him weight bearing on his legs a little and also leaning forward and pushing on something in front of him with his arms, similar to a push up on the wall. I worked with him a little bit yesterday on the couch and he was not having very much fun. He decided it was much better to lean on the couch and sleep. Today’s prayer request is for weight bearing strength in his upper and lower body.

~Shawna~

¹³ May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Romans 15:13

Day 37

Seton slept for a good chunk of the night last night! Zane’s mom came in town to spend some time with Seton this weekend and help us watch him at night. Last night she insisted that we go to bed and let her watch him. He slept from 12am-8:30am with out needing anything! He coughed around 5am but was able to handle the secretions himself. He also had another tooth start poking through on Thursday and it finished coming through yesterday – which is probably why he had such a rough night on Wednesday night.

Seton also did really well for his speech therapist yesterday. He swallowed a lot and really made a mess of his face with his rice cereal. We have been putting it on his hands and letting him take his hand to his mouth to taste it. He spends most of his day with his hands on his cheeks or trying to get them in his mouth so it works out great…but makes a huge mess!

Today’s prayer request is for his sleep pattern to continually get better, and his core strength. He still has a hard time holding his head up and holding it straight. Anytime we make him sit up in our lap or in his boppy, he is always looking for somewhere to rest his head. Core strength will also help him be able to sit up without assistance.

Thank you all for your continued prayers as we get closer and closer to his 1^st Birthday! ...only 13 more days to go

~Shawna~

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.

Isaiah 40:29-31

Day 36

Well Seton’s nights of little to no sleep continue…

It is Friday and he is meeting with his speech therapist in a little while. So today I want to pray for his desire to eat by mouth, his ability to swallow properly, and his tummy. He has been gagging (retching) a lot this morning which is common after the g-tube placement and fundoplication surgery that he had, but he has not done this in a few months. It starts when the stomach gets stretched, so when you increase their food intake this is normal. He has been on the same amount of food since his surgery and the same rate of flow for a couple of months. 

Thanks for your prayers! Have a great weekend!

~Shawna~

¹But now, this is what the LORD says—
   he who created you, Jacob,
   he who formed you, Israel:
“Do not fear, for I have redeemed you;
   I have summoned you by name; you are mine.
² When you pass through the waters,
   I will be with you;
and when you pass through the rivers,
   they will not sweep over you.
When you walk through the fire,
   you will not be burned;
   the flames will not set you ablaze. 

Isaiah 43:1-2

Day 35

Seton was up most of the evening crying and fussing, it started around 4:30pm and continued until around 1:30am he finally decided to stop crying but did not want to sleep…at 5:30am he finally decided it was time for bed. I wish I knew what was wrong with him we tried everything, Tylenol, Mylicon (an anti-gas medicine), Orajel, rocking, patting, swaddling, surrounding him and touching as much of his little body as I could…nothing worked. We had a nurse here last night so Zane and I got to stay in bed...although for some reason I am still tired. This was the first day & night he seemed to be in pain, the other nights he just did not want to sleep but was not fussy. I hear him in there fussing now so he slept til 8am --2.5 hours is not enough for his brain, that’s not enough for anyone! Maybe he will go back to sleep after we get his food hooked up in a little bit. Poor little guy, I just feel so sorry for him and don’t know how to help him. I thought he had more teeth coming in but since the Tylenol and Orajel did not work my theory may not be right…I guess we will see in a day or so. I know that babies go through spells of not sleeping and fussing but with his brain being small it needs all the rest it can get so that it does not have more seizure activity; it also needs to rest in order to function to its highest ability.

Today’s prayer request is for peaceful sleep (at night, preferably) and pain-free days, nights, and even weeks.

~Shawna~

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.

Isaiah 40:29-31

Day 34

We have covered the entire brain…don’t you all feel smarter knowing what each part does? I never did understand much in Neuroscience class.

Today’s prayer request is for his muscular system, there are approximately 639 muscles in his tiny body (wow that’s a lot). For those of you that know me…I would like to go through each one of them individually and pray for them but I will not put you all through that torture! So today we will pray for all 639+ muscles, that they will grow and function properly. Pray that Seton’s brain and each muscle can communicate properly and Seton can move with intention instead of spastic activity.

~Shawna~

³⁸ For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, ³⁹ neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.

Romans 8:38-39 (NIV)

Day 33

Today we are going to pray for Seton’s brain stem.

The brain stem is deep in the brain and it leads to the spinal cord. Its functions are:

• Breathing, Heart Rate, Swallowing Reflexes, seeing and hearing (Startle Response)
• Controls sweating, blood pressure, digestion, temperature (Autonomic Nervous System)
• Affects level of alertness
• Ability to sleep
• Sense of balance (Vestibular Function)

Observed Problems

• Decreased vital capacity in breathing, important for speech
• Swallowing food and water (Dysphagia)
• Difficulty with organization/perception of the environment
• Problems with balance and movement
• Dizziness and nausea (Vertigo)
• Sleeping difficulties (Insomnia, sleep apnea)

As you all know Seton does not really know how to swallow and here recently he doesn’t seem to remember how or when to sleep…he was up til 6:30am! So he is crashed out in bed right now. He was awake yesterday for most of the day he took 1 short nap around 1:30pm and started dosing off around 7:30pm so we had him in bed by 8:15, (normally he is in bed by 9:15pm). The earlier bed time did not work. We have tried everything from baths, reading books, calming lotion, listening to music, to sleeping on his changing table (which he likes the most) nothing seems to get him in a pattern, what works one night will not work the next…

~Shawna~

Two Blind Men Receive Sight

 ²⁹ As Jesus and his disciples were leaving Jericho, a large crowd followed him. ³⁰ Two blind men were sitting by the roadside, and when they heard that Jesus was going by, they shouted, “Lord, Son of David, have mercy on us!”

 ³¹ The crowd rebuked them and told them to be quiet, but they shouted all the louder, “Lord, Son of David, have mercy on us!”

 ³² Jesus stopped and called them. “What do you want me to do for you?” he asked.

 ³³ “Lord,” they answered, “we want our sight.”

 ³⁴ Jesus had compassion on them and touched their eyes. Immediately they received their sight and followed him.

Matthew 20: 29-34 (NIV)

http://www.neuroskills.com/brain-injury/brain-function.php

Day 32

Happy Monday!

Sweet Boy decided to stay up til 3AM so he is still snoozing away! 

Today we are going to pray for the temporal lobes, these are located on the side of the head above the ears.

Functions of the Temporal Lobes:

• Hearing ability
• Memory acquisition
• Some visual perceptions
• Categorization of objects

Observed Problems when injured:

• Difficulty in recognizing faces (Prosopagnosia)
• Difficulty in understanding spoken words (Wernicke's Aphasia)
• Disturbance with selective attention to what we see and hear
• Difficulty with identification of, and verbalization about objects
• Short-term memory loss. Interference with long-term memory Increased or decreased interest in sexual behavior
• Inability to categorize objects (Categorization)
• Right lobe damage can cause persistent talking
• Increased aggressive behavior

I hope you all have a great week.

~Shawna~

The Power of Faith over a Demon

 ¹⁴ When they reached the crowd, a man approached and knelt down before Him. ¹⁵ “Lord,” he said, “have mercy on my son, because he has seizures and suffers severely. He often falls into the fire and often into the water. ¹⁶ I brought him to Your disciples, but they couldn’t heal him.”

 ¹⁷ Jesus replied, “You unbelieving and rebellious generation! How long will I be with you? How long must I put up with you? Bring him here to Me.” ¹⁸ Then Jesus rebuked the demon, and it came out of him, and from that moment the boy was healed.

 ¹⁹ Then the disciples approached Jesus privately and said, “Why couldn’t we drive it out?”

   ²⁰ “Because of your little faith,” He told them. “For I assure you: If you have faith the size of a mustard seed, you will tell this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you. ²¹ However, this kind does not come out except by prayer and fasting.”

Matthew 17:14-21 (HCSB)

Day 31

Well, Seton had one really good night this week, a few okay nights and the last 3 have not been so good. He has decided that he really doesn’t need to sleep at night and that an hour here and there will do him just fine, so he can fuss all afternoon when we keep him up… So please pray for his sleeping schedule to line up with the rest of Texas at least and not the other side of the world. J

Just for fun...This is an old picture but I love the expression on his face

Today’s prayer request is for the occipital lobes of the brain to be fully functional. These are the most posterior lobes, at the back of the head.

The only function of the occipital lobes is vision.

Observed Problems when injured:

• Defects in vision (Visual Field Cuts)
• Difficulty with locating objects in environment
• Difficulty with identifying colors (Color Agnosia)
• Production of hallucinations Visual illusions - inaccurately seeing objects
• Word blindness - inability to recognize words
• Difficulty in recognizing drawn objects
• Inability to recognize the movement of an object (Movement Agnosia)
• Difficulties with reading and writing

~Shawna~

A Girl Restored to Life and a Woman Healed

¹⁸ While he was saying these things to them, behold, a ruler came in and knelt before him, saying, “My daughter has just died, but come and lay your hand on her, and she will live.” ¹⁹ And Jesus rose and followed him, with his disciples. ²⁰ And behold, a woman who had suffered from a discharge of blood for twelve years came up behind him and touched the fringe of his garment, ²¹ for she said to herself, “If I only touch his garment, I will be made well.” ²² Jesus turned, and seeing her he said, “Take heart, daughter; your faith has made you well.” And instantly the woman was made well. ²³ And when Jesus came to the ruler's house and saw the flute players and the crowd making a commotion, ²⁴ he said, “Go away, for the girl is not dead but sleeping.” And they laughed at him. ²⁵ But when the crowd had been put outside, he went in and took her by the hand, and the girl arose. ²⁶ And the report of this went through all that district.

Matthew 9:18-26

Picture and information from  http://www.neuroskills.com/brain-injury/brain-function.php

Day 30

What an experience this has been so far! I can not believe I followed through with the plan and have posted daily for the last 30 days! Thank you to all our followers for the prayers for Seton, Zane and I. We appreciate the time you have taken out of your day to read this blog and pray for our family.

30 days also means that Seton will ONE in 20 days…WOW! That is amazing!

Today we are going to pray specifically for the parietal lobes of Seton’s brain, to be fully functional. The parietal lobes are located near the back and top of the head.

The Functions of the parietal lobes:

• Location for visual attention
• Location for touch perception
• Goal directed voluntary movements
• Manipulation of objects
• Integration of different senses that allows for understanding a single concept

Observed Problems when injured:

• Inability to attend to more than one object at a time
• Inability to name an object (Anomia)
• Inability to locate the words for writing (Agraphia)
• Problems with reading (Alexia)
• Difficulty with drawing objects
• Difficulty in distinguishing left from right
• Difficulty with doing mathematics (Dyscalculia)
• Lack of awareness of certain body parts and/or surrounding space (Apraxia) that leads to difficulties in self-care. Inability to focus visual attention
• Difficulties with eye and hand coordination

 Thanks again and have a great weekend, enjoy the moisture for those of you that are getting some this morning! 

~Shawna~

Jesus Heals a Paralytic

¹And getting into a boat he crossed over and came to his own city. ² And behold, some people brought to him a paralytic, lying on a bed. And when Jesus saw their faith, he said to the paralytic, “Take heart, my son;your sins are forgiven.” ³ And behold, some of the scribes said to themselves, “This man is blaspheming.”⁴ But Jesus, knowing[a] their thoughts, said, “Why do you think evil in your hearts? ⁵ For which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? ⁶ But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic—“Rise, pick up your bed and go home.” ⁷ And he rose and went home. ⁸ When the crowds saw it, they were afraid, and they glorified God, who had given such authority to men.

Matthew 9:1-8 (ESV)

Picture and information from http://www.neuroskills.com/brain-injury/brain-function.php

Day 29

Seton wanted to say Good Morning to everyone; I guess that is why he did not sleep much last night…to make sure I got a picture with his eyes open before writing the blog. And Happy Birthday Grandma!!

Good Morning! Happy Birthday Grandma!

Yesterday we tried some more rice cereal. Just to see what he would do… I gave him the spoon a few times and I put some on his hand. Of course he rubbed it all over his clothes and his face. Here are a few pictures.

I think he got tired of holding his head up

Today we are going to pray for the Frontal Lobes of the brain, they are the most anterior, right under the forehead.

Frontal Lobe Functions:

• How we know what we are doing within our environment (Consciousness)
• How we initiate activity in response to our environment
• Judgments we make about what occurs in our daily activities
• Controls our emotional response
• Controls our expressive language
• Assigns meaning to the words we choose
• Involves word associations
• Memory for habits and motor activities

Observed Problems when injured:

• Loss of simple movement of various body parts (Paralysis)
• Inability to plan a sequence of complex movements needed to complete multi-stepped tasks, such as making coffee (Sequencing)
• Loss of spontaneity in interacting with others. Loss of flexibility in thinking
• Persistence of a single thought (Perseveration)
• Inability to focus on task (Attending)
• Mood changes (Emotionally Labile)
• Changes in social behavior. Changes in personality
• Difficulty with problem solving
• Inability to express language (Broca's Aphasia)

I hope you all have a great Friday!

~Shawna~

Jesus Heals Many

¹⁴ And when Jesus entered Peter's house, he saw his mother-in-law lying sick with a fever. ¹⁵ He touched her hand, and the fever left her, and she rose and began to serve him. ¹⁶ That evening they brought to him many who were oppressed by demons, and he cast out the spirits with a word and healed all who were sick. ¹⁷ This was to fulfill what was spoken by the prophet Isaiah: “He took our illnesses and bore our diseases.”

Matthew 8:14-17

Picture and brain information from http://www.neuroskills.com/brain-injury/brain-function.php

Day 28

Seton did really well yesterday and was very relaxed when we were getting his splints made. Now if he will just be relaxed for our nurses that have to put them on 3 - 4 times a day.

Over the next few days we will be praying for a specific area of his brain and the functions it provides. So I have included a drawing of the brain so you can see the specific area.

Today’s prayer request is for his brain, specifically his cerebellum, located at the base of the skull.

The functions of this part of the brain are:

• Coordination of voluntary movement Balance and equilibrium
• Some memory for reflex motor acts

Problems observed when people have injury to that area:

• Loss of ability to coordinate fine movements
• Loss of ability to walk
• Inability to reach out and grab objects
• Tremors. Dizziness (Vertigo)
• Slurred Speech (Scanning Speech)
• Inability to make rapid movements

This is the portion of the brain that the doctors told us was very small or not there; when we did the fetal MRI last January. I believe it is there and God can make it fully functional no matter what size it is.

~Shawna~

Jesus Heals a Man Born Blind

 ¹ As he passed by, he saw a man blind from birth. ² And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” ³ Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. ⁴ We must work the works of him who sent me while it is day; night is coming, when no one can work. ⁵ As long as I am in the world, I am the light of the world.” ⁶ Having said these things, he spit on the ground and made mud with the saliva. Then he anointed the man's eyes with the mud ⁷ and said to him, “Go, wash in the pool of Siloam” (which means Sent). So he went and washed and came back seeing.

John 9:1-7

Picture and brain information from http://www.neuroskills.com/brain-injury/brain-function.php

Day 27

Good morning everyone! Just a quick update…My wonderful Dad came over last night so that Zane and I could get some good sleep; Seton had the best night he has had in a few months! He did not need any suctioning between 10pm and 7am (THAT IS 9 HOURS!!! J), he did wake up a few times coughing but was able to swallow the secretions! Yay, Seton! Keep it up! Thanks again Dad!

Today at 3:00 we are going to get new splints for Seton’s hands. Please pray that Seton will be relaxed enough that his OT can get this set almost flat (or in neutral).

I could not get him to look at the camera

Today’s prayer request is for his feeding button. I know that we have prayed for this a few times already, the infection on his skin around his button is slowly getting better but the button continues to leak. The more it leaks the less chance the skin has to heal because it is always wet. Insurance will pay for a new button every 6 months, so we will get a new one in a few weeks; but I do not think that the button is the problem. When he coughs it leaks…if you hold him wrong it leaks…if he lays wrong it leaks…and sometimes it just leaks for no reason. When it leaks stomach acid and milk leak, he is not getting all his milk and the acid irritates the already infected skin. It is an endless cycle. I spoke to Dr. H yesterday and we are going to try coconut oil and tea tree oil mixture to see if we can clear up this infection.

Just in case you do not know what I am talking about when I say Feeding Button I have included some pictures. These are not pictures of Seton's button. In the first picture the balloon at the bottom keeps it in his stomach. 

This is all we see on his skin, except his skin is red and angry looking. 

~Shawna~

Jesus Heals a Blind Man at Bethsaida

 ²² They came to Bethsaida, and some people brought a blind man and begged Jesus to touch him. ²³ He took the blind man by the hand and led him outside the village. When he had spit on the man’s eyes and put his hands on him, Jesus asked, “Do you see anything?”

 ²⁴ He looked up and said, “I see people; they look like trees walking around.”

 ²⁵ Once more Jesus put his hands on the man’s eyes. Then his eyes were opened, his sight was restored, and he saw everything clearly. 

Mark 8:22-25

Day 26

Happy Valentine’s Day to you all! We don’t have too much going on around here today; Seton is still sleeping so it is pretty quite around our house. Today I would like to pray for Seton’s voice and talking skills. I know… I know he is only 11 months old. J I do not expect him to tell me a story, not yet at least. He is finding new tones in his voice and really enjoys talking to Daddy. I would like to pray that he understands what we are saying so that one day he will be able to have a conversation with us. Right now he does a lot of one syllable grunting and cuing, sometimes he gets a good 2 syllable grunt (ugh-umm) out there especially when he is talking with Zane. He also likes to sing (or make sounds) when I have music on. 

In order to speak, you also have to have good use of your tongue and facial muscles, so please pray for these too.

Here are a few pictures

Sitting in my new high chair

Not enjoying my rice cereal

He was too tired to open his eyes for me

Thanks for your prayers

~Shawna~

¹⁹ and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Ephesians 3:19

Jesus Heals a Deaf and Mute Man

 ³¹ Then Jesus left the vicinity of Tyre and went through Sidon, down to the Sea of Galilee and into the region of the Decapolis.³² There some people brought to him a man who was deaf and could hardly talk, and they begged Jesus to place his hand on him.

 ³³ After he took him aside, away from the crowd, Jesus put his fingers into the man’s ears. Then he spit and touched the man’s tongue. ³⁴ He looked up to heaven and with a deep sigh said to him,“Ephphatha!” (which means “Be opened!”). ³⁵ At this, the man’s ears were opened, his tongue was loosened and he began to speak plainly.

 ³⁶ Jesus commanded them not to tell anyone. But the more he did so, the more they kept talking about it. ³⁷ People were overwhelmed with amazement. “He has done everything well,” they said. “He even makes the deaf hear and the mute speak.”

Mark 7:31-37

Day 25

Today’s prayer request is for Seton’s motor control. He is getting a little bit better at getting his hand up to his mouth, but sometimes it is really hard for him. This morning he kept trying to suck on his hand and he kept hitting and scratching himself on the cheek and the ear instead. Please pray that his motor skills be activated and operated to perfection in every way.

If you don’t mind say an extra prayer for Zane and I that we will fight off these colds that are trying to catch up to us.

Today is MY DAY! So I am off to snuggle with my little sugar bear and watch the snow melt.

~Shawna~

Jesus Heals on the Sabbath

¹ Another time Jesus went into the synagogue, and a man with a shriveled hand was there. ² Some of them were looking for a reason to accuse Jesus, so they watched him closely to see if he would heal him on the Sabbath. 3 Jesus said to the man with the shriveled hand, “Stand up in front of everyone.”

 ⁴ Then Jesus asked them, “Which is lawful on the Sabbath: to do good or to do evil, to save life or to kill?”But they remained silent.

 ⁵ He looked around at them in anger and, deeply distressed at their stubborn hearts, said to the man,“Stretch out your hand.” He stretched it out, and his hand was completely restored.

Mark 3:1-5

Day 24

As each day comes and we get closer and closer to Seton’s birthday, I am amazed! Amazed that God has blessed us with such an incredible boy, amazed that God chose us to be his parents, amazed that Seton is doing so well, AMAZED! Thank you LORD!

Thanks be to God for this indescribable gift.                         2 Corinthians 9:15

Today I feel like we should pray for complete healing. Please pray that Seton’s entire body be healed from the top of his head to the tips of toes.

Have a blessed Sunday!

~Shawna~

Day 23

Today our prayer request is sleep, again. Seton has reverted back to on a good night only sleeping for about 45 – 60 minutes without needing attention; on a bad night he needs us every 5-15 minutes. Around Thanksgiving he was sleeping for 5-6 hours without needing attention. He even had one night where we did not touch him for 9 hours. Usually when he wakes up and needs attention he needs one of two things; either he has coughed and needs us to suction his mouth and nose, or he needs to have his clothes changed because his feeding button has leaked and his entire mid section is wet, he very rarely needs his diaper changed at night…thanks to him being big enough for night time diapers! Those are amazing!

When Seton is waking each hour he does not get good rest and is tired all day, so we get to keep a grumpy boy awake all day and does not want to do any of his therapy…which makes it hard to learn new things. Zane and I (and anyone that is helping us) do not get any sleep either. During this cold and flu season, everyone around us is sick or has sick kiddos…we are trying so hard not to get sick again this season and expose Seton to another illness. It is really wearing us down, we need more sleep.

Thank you for your prayers for all of us.

~Shawna~

Truly my soul finds rest in God; my salvation comes from him.

Psalm 62:1 

Day 22

Today’s prayer request is simple PEACE. This is what my devotional Destined to Reign Devotional by Joseph Prince touched on today. He said that the Hebrew word (Isaiah 53:5) for “peace” means completeness, soundness, health and prosperity. Sounds like something I pray for everyone in my life, especially Seton. I want him to be complete, sound, healthy, and prosper in life or be peaceful in life. Simple but complex all at the same time… So many people wish or hope for these things and who wouldn’t want them, right. The good news is we already have them…they are ours thanks to Jesus dying on the cross. All we have to do is ask for them and accept them. Thank you Lord!

Today we are asking God to give Seton PEACE, to heal his body completely, protect him from other illnesses and take away all his pain.

I pray for PEACE over each one of you and your homes. Have a great weekend!

~Shawna~

But he was pierced by our transgressions,

he was crushed for our iniquities;

the punishment that brought us peace was on him,

and by his wounds we are healed.

Isaiah 53:5

Oh, and if you are looking for a good daily devotional I highly recommend this one.

Destined to Reign Devotional by Joseph Prince

Day 21

Seton is 11 months old today! I honestly can not believe it for many reasons; I was not sure he would still be here; we were told by so many people that he would not be, and it feels like it has only been a few weeks since we were sitting up at BSA waiting on the clock so we could go hold our sweet boy in the NICU. In the past year, we have felt a world of emotions, some I did not even know I was capable of feeling. Now we are planning a Birthday Party for a ONE year old! How exciting!!

Tuesday night I fed Seton some rice cereal for the first time! I do not have his high-chair put together yet, since he obviously has not needed it yet. So I held him in my lap and tried to feed him…it went pretty well for a first time. I am not sure that he ever swallowed any but he did play with it in his mouth and moved his tongue toward the spoon a few times. Seton had it all over his hands and face and I had some on my shoulder, overall not as messy as I was expecting. J Sorry the picture is a little fuzzy I wanted to get his first reaction to the taste…

First taste of Rice Cereal

Today’s prayer request is that his desire to eat by mouth increases and his ability to swallow properly will increase also.  

~Shawna~

Take delight in the LORD,
and he will give you the desires of your heart.

Psalms 37:4

Day 20

Sorry for the delay this morning…Seton woke up at 3:00am this morning and then every 10-15 minutes after that coughing and crying out in pain. Pain that I am guessing is related to teething. So guess what…

We are going to pray for all pain in Seton’s body to be relieved and never return again. Pain that interrupts his sleep and is not relieved by Tylenol or orajel is what bothers me the most because as a mother you feel helpless. All you can do is pray for sweet baby to for the pain to disappear so he calm down and get some good sleep, which I did over and over and over last night. 

Thank you all for your prayers, again sorry this is late and brief this morning I am running on little sleep.

~Shawna~

¹³ Moses answered the people, “Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The Egyptians you see today you will never see again. ¹⁴ The LORD will fight for you; you need only to be still.”

Exodus 14:13-14

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