Day 12

Today we are going to pray for head control. Seton needs to get stronger in his core, back, and neck so that he can hold up his head. When we place him in certain positions he is able to hold his head for a short amount of time, then he gives up and lets it relax back or forward. He rarely lifts his head on his own…unless he is sneezing and shooting snot rockets, as Zane likes to say. J He will turn his head to look in a different direction sometimes too.  His favorite position is lying on his back on his boppy pillow with his neck fully extended backward, watching TV upside down. I think it opens up his airway completely so he can breathe better that way. I can’t believe I don’t have a picture of this…I will take one today and post it tomorrow. This position does not help work his neck muscles. He will see his occupational therapist today and she will work with him on sitting up and controlling his head.

Thank you for your continued prayers and support for us as we take this journey with Seton. We are blessed to have you all in our lives and praying for our son. We really appreciate it.

What then shall we say to these things? If God is for us, who can be against us?

Romans 8:31

Zane, Shawna and Seton 

Day 11

This will be brief today because it is MY MONDAY! I love that God has given me this day (and every Monday)...the most dreaded day of the week for most people is the VERY BEST DAY FOR ME! I get to spend all day with my boy! 

Today we are going to pray for strength in his core, arms, and legs; specifically for weight-bearing. He does not have the ability to crawl or roll-over yet, but we are working on it. He can sit on his knees and bear weight through his hips if someone holds on to his shoulders or we rest his elbows (or upper body) on the boppy pillow. He needs more strength in his neck and back also to help him hold his head up in the crawling position.

“I can do all things through Christ who gives me strength.”   

Philippians  4:13

Have a great week everyone!

~Shawna~

Day 10

I can not believe it is Sunday again! That means I get to spend all day tomorrow with my boy by myself!! I get excited every week! Anyways on with the prayer for today…

Today will be praying for Seton’s hands, He does not seem to have much control over them most of the time. His hands try to stay in a fist and have since he was born. It made for some interesting handprints at Christmas. J

Can you tell by his face...Hand splints are not his favorite thing to wear

He wears these splints for 2 hours 4-5 times a day. Once a month we take him and his splints to see Misty, one of his occupational therapists, to get them readjusted for the new range of motion in his fingers, which we need to do this week or next. 

  

He is trying to suck on his thumb and feel is soft PJs

The splints are helping to stretch the muscles and tendons in his hands so that he can use them more. If he feels something he wants to touch or grab (like his hair and ears that he pulls on frequently) he can a little. I have not found any textures that he really wants to feel or toys he will hold on too…any suggestions? 

 

³⁰ As for God, his way is perfect:
   The LORD’s word is flawless;
   he shields all who take refuge in him.
³¹ For who is God besides the LORD?
   And who is the Rock except our God?
³² It is God who arms me with strength
   and keeps my way secure.
³³ He makes my feet like the feet of a deer;
   he causes me to stand on the heights.
³⁴ He trains my hands for battle;
   my arms can bend a bow of bronze.
³⁵ You make your saving help my shield,
   and your right hand sustains me;
   your help has made me great.
³⁶ You provide a broad path for my feet,
   so that my ankles do not give way.

Psalm 18:30-36 (NIV)

Enjoy the rest of your weekend!

~Shawna~

Day 9

Today we are going to pray for Seton’s lung health. The doctors have diagnosed him with chronic lung disease, part if this diagnosis is due to his inability to swallow and the risk of aspiration. We currently give him a breathing treatment and CPT (chest physiotherapy or percussions) every 8 hours, but when he gets congested (or sick like he was a few weeks ago) we give them every 3-4 hours, with a saline treatment in between.

This has improved over the last 10.5 months, when we first brought him home from the hospital we were giving him a breathing treatment every 4 hours, even throughout the night. Now if he is sleeping we delay the treatment until he wakes up. I want to pray that his progress continues and that we can stop the breathing treatments completely, because I can think of a million better (more fun) things to do with our time. J

¹⁰ In His hand is the life of every creature and the breath of all mankind. 

Job 12:10 (NIV)

~Shawna~

Day 8

Today is Friday, which means that Seton will see the speech therapist today so naturally I am thinking about his eating ability. Today I want to pray for his facial muscles. He has strength in some of them and no strength in others. These muscles also help him to suck on a pacifier, bottle, or sippy cup. Currently he will chew a little on things you put in his mouth and feel them with his tongue.

Seton is 10.5 months old and has not smiled yet, but he can pout with the best of them. It is very hard to discern his feelings and personality because of this. This is extremely hard for me! I want to be able act silly and have him grin or laugh at me or play with a toy and know he enjoys it. The only response we usually get from him is a pout or a blank stare. He likes to talk and he is finding out how to use his vocal cords to make different sounds. 

Seton was not happy about sitting in his own chair at Thanksgiving Dinner 

Check out that bottom lip! 

It will just melt my heart the day I see him smile and hear him giggle. 

I am looking forward to see what God has in store for us over the next 42 days, as we continue to pray for Seton’s healing. 

“⁵ If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. ⁶ But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. ⁷ That person should not expect to receive anything from the Lord.”

James 1:5-8 (NIV)

Thank you all!

Shawna

Day 7

Today we are going to pray for Seton’s caretakers (nurses, therapists, grandparents, doctors, etc.); all of the people that come in our home daily and those outside of our home that help us take care of Seton. God has truly blessed us with some great people in our lives and we could not take care of Seton like he needs without them. We are going to pray for their health and their family’s health, that no illness will attack their homes.

I have listed the previous days below if you want to pray for any (or allJ) of these again.

Day 1 – Restful Sleep

Day 2 – Digestive system (suck/ swallow reflex)

Day 3 – Motor control

Day 4 – Complete Brain Development

Day 5 – Skin

Day 6 – Immune System

Thank you all so much for joining us in prayer, prayer is so powerful and I truly believe that Seton will be 100% healed this year. He will be made whole and that our life (what Zane calls the new normal) will be completely different, again.

I hope you all have a wonderful day!

“² He was with God in the beginning. ³ Through him all things were made; without him nothing was made that has been made. ⁴ In him was life, and that life was the light of all mankind.”   

John 1: 2-4

"¹⁶Rejoice always, ¹⁷Pray continually, ¹⁸give thanks in all circumstances; for this is God's will for you in Christ Jesus."

1 Thessalonians 5:16-18

Shawna 

Day 6

I think Seton is finally over the winter crud he caught a week or two before Christmas, so today we are going to pray for his immune system to get stronger and for him to stay healthy through the rest of cold/ flu season. We were told when he was born that if he ever caught a cold that he may not live through it. Since he has a weaker immune system we have been (and will continue to be) very cautious with him…We do not take him very many places and we are careful about who touches and holds him when we are out in public. We are also careful about who comes over to the house and make sure everyone washes their hands…all the time. Seton has not even been on our floor without a blanket underneath him. I know at some point we will have to start introducing him to more germs but for now we will pray for his immune system to get stronger, so that we don’t freak out every time someone coughs or sneezes around him.

Thank you again for all your prayers.

“In all these things we overwhelmingly conquer through Him who loved us”

Romans 8:37 (NASB)

Day 5

This may be odd for some of you, but we are going to pray for his skin...specifically the skin around Seton’s feeding tube (mic-key button) on his stomach. Since this button goes straight into his stomach, it can leak stomach contents. When it leaks it causes his skin to break out in a rash or gets an infection. It is basically a piece of plastic that sits on his skin, never moves and stays wet…can you imagine that feeling?

We are currently fighting an infection that he has had for a couple of weeks. It can be very painful for him when we clean it, which we do several times a day. We have to also be extremely careful when we are cleaning it so that we do not spread the infection anywhere else, like the diaper area. 

Please pray that his skin and button site will clear up and stay clear and that no other area of skin will be affected. If we can get the infection clear…the button will fit better and not leak as much.

“Nothing, you see, is impossible with God.” Luke 1:37 (MSG) 

Thank you all so much for your prayers, it means so much to us! 

A little side note --- Seton has had 4 good restful nights in a row! J

Day 4

Today we are praying for Seton’s Brain Development. Please pray for complete growth and healing of his brain, spinal cord, neurons and nerves.

Today the post is short because Mondays are my days alone with my boy, so I am off to snuggle with Seton.

I pray that you all have a wonderful week. Thank you for your prayers! 

“I have come that they may have life, and have it to the full.” John 10:10

Day 3

Motor control, that is our prayer focus for today. Please pray that Seton’s brain develops in the right areas so that he can control his movements. Right now he works so hard to get his right hand up to his mouth so that he can try to ease the pain of teething; he usually ends up scratching his face in the process because he just can not seem to make his hard go where he wants it. He was using his both arms about the same, but in the last week or so he has only been using his right and has been tucking his left arm back behind him and keeping it straight…that makes for a fun time when trying to change his clothes J. He has an occupational therapist and a physical therapist that he sees every other week to help with his muscle control, we also perform range of motion exercises and stretching 4-6 times a day to help with his muscles.

“I can do all this through Christ who gives me strength.” Philippians 4:13

I just have to show you all his hair this morning! He had some serious bed head after a pretty good night!

Please say an extra prayer for Tessa Rayne and her development today.  

Thanks again for all your prayers!

Zane, Shawna and Seton

Day 2

Today I want to pray for Seton’s digestive system, mainly his suck/swallow reflex. The doctors and nurses early on told us that he did not swallow at all when they watch him under radiation. This has improved some he can swallow some of his secretions. We see a speech therapist every week and she works with him with a bottle of water or milk, he can swallow some of what we squirt in his mouth but will not suck on the nipple at all. He has tried to chew on the nipple, but that is not a frequent activity either. In order for us to try to feed him any real amount by mouth, he has to pass a swallow study at the hospital. If you want to know more about this study, I have attached an explanation of a swallow study below from Childrens Memorial Hospital in Chicago, Illinois http://www.childrensmemorial.org/depts/rehab/swallowstudy.aspx.

Seton had a swallow study several months ago and he did not pass, all he would do is push the food to the back of his mouth and then up his nose, where we suctioned it out. He did not fit in the chair very well and it was not at a good angle for him to even hold his head up.  

As for the sucking ability, I only remember seeing him suck on his pacifier twice. One time was the day after his g-tube surgery (when he could not eat for 2 days) and the other time was early this past Wednesday morning when I was trying to calm him down…he was screaming in pain from his top front teeth that were trying to come in. Yes I did say teeth – he got his 2 front top teeth this week (no bottom teeth yet but I don’t think they are far behind.

Sleeping away Wednesday night  -- Notice his pacifier ;-) 

We have 2 friends whos kids also need prayer for their digestive systems, Marley Kate and Brecken Layne. Please say an extra prayer for these babies and their parents.

First walk of the season

 It was too nice outside on Thursday night not to take Seton out for some fresh air. 

Thank you all for your prayers...he had a pretty good night last night. 

Zane, Shawna and Seton 

²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.  Ephesians 3:20 -21 (NIV) 

Videofluoroscopic swallow study (VFSS)

• A swallow study is a procedure used to test children experiencing difficulties with feeding and/or swallowing.
• The swallow study is performed in the medical imaging department with a speech-language pathologist and a radiologist. Special equipment is used to provide a "moving x-ray" of the child's swallow.
• During the test, the child is placed in a chair next to the x-ray equipment. The speech-language pathologist feeds the child a variety of foods mixed with barium. The barium makes the food visible during the x-ray.
• The speech pathologist closely watches the x-ray to see how the food and drink move through the mouth and into the esophagus during drinking, chewing and swallowing and watches for any signs of aspiration (when the food or liquid goes "down the wrong way" into the airway).
• Once the test is complete, you will be given recommendations about feeding strategies and changes to your child's diet if needed to decrease the risk of choking or aspiration.

http://www.childrensmemorial.org/depts/rehab/swallowstudy.aspx

Day 1

Today we are praying for peaceful, restful sleep at night for Seton, for some reason he can sleep great during the day?? He has a continuous cough that wakes him up all night long. Sometimes he is able to go right back to sleep, other times he needs suctioning, and sometimes he just gets upset and can not settle back down. He is also teething and this causes more drool and secretions that sometimes he can not swallow correctly, which causes more coughing.

“Come to me all who labor and are heavy laden, and I will give you rest.”  Matt 11:28

Blessings to you all and thank you for your prayers,

Zane, Shawna and Seton

We have several friends with sick kiddos also, would you all send up an extra prayer of healing for them. There are too many to list names. 

50 Days of Prayer

Over the next 50 days leading up to Seton's 1st Birthday I will be writing a blog post of specific prayers for Seton and his healing. I will start tomorrow morning with 'Day 1'. I will try to have them posted by 10am daily, I am not as punctual as Zane but I will do my best. If you want to join us in prayer for Seton's healing, please do. I will be praying everyday all day, as always. We will be also be praying over him as we put him in bed at night between 9:00-9:30 (That is the only consistent scheduled time for us). 

I am just guessing but ... some days they might be long and more specific and other days they may be as short as one sentence. I hope this will help all of you that want to be more involved in the healing prayers for Seton and it will give you all something specific to pray for daily. 

"So I say to you, keep asking, and it will be given to you. Keep searching, and you will find. Keep knocking, and the door will be opened to you." Luke 11:9

Thanks for praying!

~Shawna~

10 Months Old

This past Monday, Seton turned 10 months old. We have not updated in a while because there really is not much to update. We are finally getting into the stride of our new life, what Zane calls “the new normal.” Seton has therapy appointments twice a week, with a speech therapist every week, occupational and physical therapist every other week. We only have to go see Dr. Habersang every other month, unless something goes wrong (like his mic-key button leaking, which happened this week).  

It was a year ago this week when we first found out something might be wrong with our baby boy. And our journey of seeing specialist doctor began. What a way to start out 2011… a year that I am very glad is OVER.

We took Seton to meet Santa at Santa Brunch at Amarillo Country Club this year. Seton got to meet Santa and Mrs. Claus. 

In Santa's Sleigh with Landon and Gracie

Meeting Santa with Landon and Gracie

Mrs. Claus & Seton

We had a very Merry Christmas. God decided to bless Seton with a white Christmas for his very first Christmas. It was perfect. We still loaded him and all his gear up and took him all over to different family gatherings, but Christmas Eve and Christmas morning we sat around in our pjs and just spent time together as a family of three. Having just the 3 of us happens so rarely in our house, and we really enjoyed it. Seton loved looking at the lights on the Christmas trees and garland around the house. I really hated to take it all down. Here are a few (or several) pictures…

Staring at the Christmas lights

My Little Santa

Hanging out with his giraffe Christmas Morning

Looking out at the White Christmas

Our Family

I hope you all don’t mind me sharing some of my thoughts…

When people ask me, “How is Seton doing?” I really have a hard time answering that question. Don’t get me wrong, I do not mind being asked. Sometimes I just have a hard time answering. If you ask when Zane is with me, I usually look to him to answer (I am not much of a talker). The other 10% the time I say, “He is good” or “He is okay,” without much more detail. Do you really want to know that I was up all night because he can’t get over this crud, or that he cried most of the night for unexplainable reasons that I chalk up to teething…even though he does not have any teeth yet? I cannot talk about my fear of him never walking, crawling, eating, playing, or even smiling.  Yes, it is a miracle that he is alive and gaining weight. Overall he is doing well. He made it through his first sinus infection/ flu.

Then people ask, “How are you doing?” I have a hard time answering that also because I do not talk about my pain or my troubles. No one needs to worry about me. No one needs to know the pain I struggle with daily. Do you really want to hear me talk about how I was up all night listening to the baby monitor to make sure Seton was still breathing, or that I saw an adult driving his wheelchair down 45^th street and had to pull over because couldn't quit crying because that is not the life I want for my son? There hasn’t been one day this week I have not cried while driving down the street. When I hear people talk about finally being out of diapers, I sit in silence because that may never happen for my family. I sit in silence a lot because I do not want other people to worry about me; I have always been “the fixer” not the one who needs “fixing.” I have a lot of negative thoughts in my head that I have to fight most days.

We had a calm New Years Eve; again just hanging out as a family…I think we were all in bed by 11:30pm. We are excited for the New Year and all God has planned for us. We might be the only family that had a baby last year that will not say it was not the best year of our life.  It was a difficult year, it had good times, and it changed our lives; but I am glad it is over. I can not believe how much we have changed and grown over the year. We made some really great friends this past year, and would not have made it without the help of our family and friends. 2012 is going to be a GREAT year for our family.

I don't know why God chose us to be Seton’s parents, but I am glad he did. I love that little boy so much. Do I wish things were different? Honestly, yes, sometimes I do, and then other times I could not imagine anything better.  We still expect a miracle of complete healing for Seton; and pray for it every minute of every day. I know God has a plan for us and that we are just in a difficult season right now. He has brought us this far and will continue to carry us through our journey as Seton’s parents, because we are not strong enough to do it without HIM.

This song is perfect for us. I have loved it since the first time I heard it last year.

 Matthew West - Strong Enough

 Here are a few more pictures of Seton. I have not taken any 10 month pictures yet, but I will post them when I do.

9 months old

I just love these toes! 

 ⁹ “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. ¹⁰ For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.”    Luke 11:9-10 (NLT)

Thank you for all your prayers and support!

~Shawna~