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)