God Needs Little Angels

Colin Gladman wrote this AMAZING song for Seton. Please listen!

http://www.youtube.com/watch?v=4LFByf-WUDA&sns=em

Obituary and service information

Here's the link to Seton's obituary and service information.  You are all welcome to join us.

http://amarillo.com/obituaries/2012-12-06/seton-blaine-oliver

For those we haven't had a chance to communicate with yet, Seton passed on to his eternal life last night around 9:16 PM.  Our hearts are very heavy right now, but our spirits are so happy for him.  He made us forever proud, and we know he has no more struggles and has won the prize.  We will post an update in the near future when we're able to get some time, but for now - God is good.

Zane

I have fought the good fight, I have finished the race, I have kept the faith. - 2 Timothy 4:7

Keep Praying

We took Seton off the bipap machine, waiting for God to take him around 2:20am.

Little did we know Seton and God are not done yet. His stats have improved...he
is still struggling dont get me wrong, we are in no way out of the woods, but
ISN'T GOD AMAZING! 
So here we sit with our boy, he has been talking (babbling) to us all, cries a little. Loved it when his daddy brushed his and fixed his hair, drew some kaleidoscope pictures with mommy. Sat in everyone's lap tonight. Gave fist bumps or knuckles (knuckle chucks if your his Grammy)  :-)
 He lays here in bed beside daddy taking a nap...with just an oxygen mask on, breathing like he does at home most nights.

Dear Father,  we love you and thank you for every minute you have given us with our sweet, Seton Blaine Oliver. He is in your hands and you will do your will, like we have asked from the beginning, almost 2 years ago when we found out there was possibly a problem. He is your child and you love him far more than we do. Comfort Seton and bring him peace, and healing on Earth or in Heaven with you. I ask these things in Jesus Name, Amen. 

Fighter

Seton is still hanging on, being the little fighter we all knew he is! 👊 I always knew his hands were in fists for a reason! Ready to fight!

Prayers Needed

Just to give everyone a quick update...
Seton started throwing up blood Sunday morning, so we headed to the ER. We started feeling better about all that he has been going thru the past few weeks, he has been extremely fussy and in pain but we did not know why. Once in the ER they found out that he probably had a stomach ulcer, so they admitted us to PICU. Once in the PICU Seton started struggling to breathe so we got to have the end of life discussion with Dr.Kim our new in hospital doctor...because DrH no longer has hospital privileges, which is another story. In order to get his oxygen saturation level back up they had to turn his oxygen up to 8 LPM @ 100% which is extremely high, with breathing treatments every 2 hours and a CPT vest for 15 min with every breathing Today they are pulling lots of blood to test everything again and add some tests also (coagulation, phenobarbital, CBC, etc). The chest X-ray showed some pnuemonia in his lungs and his CO2 levels are extremely high. Seton is now on a bi pap machine to help pull the CO2 out of his blood. Right now we are still letting his stomach contents drain to get all the blood out, to help comfort him. That is our main goal right now, COMFORT!
He is a little fighter and is still hanging in there. We are standing on Psalms 18 for him. God is his strength and helping him hang in there. He is wrapped in God's Arms. I will post an update as often as I can.
Please pray for comfort, CO2 levels to decrease, blood pH normalize, and wisdom over the Hospital staff and us as we make future decisions for our little WARRIOR!

Summertime 2012 & Seton is 18 months old

Well, it has been a while! We have been fairly busy with Seton and work this summer. Summertime did not slow down for us at all. We are still battling Seton’s seizures, and trying to get his medications right for him.

Seton was admitted to the hospital the day after Father’s Day for seizures. These seizures were more severe than those he has had in the past year. We decided it was best to head to the ER, since he was turning blue and had stopped breathing during both seizures he had the first day. Dr. Habersang was out of town so we had an on call doctor. It is hard not to have your regular doctor that knows Seton, and knows how we like to work through problems. We were in the hospital for 3 days and Seton was treated for everything except his seizures. He spiked a fever one time and they did a chest x-ray to check for pneumonia, which he did not have. The one fever that he spiked was inaccurate, the xray showed a small amount of fluid in his lungs which was taken care of with the oxygen and increased breathing treatments. Then after 2 days of IV fluids it caused his to have low potassium levels so we had to stay another day to get his potassium levels back up with and IV potassium bolous. Finally, we were able to go home. 

The next few weeks were uneventful in the Oliver House. We tried to get Seton back on a non-hospital schedule, started working on his eating by mouth again. He seems to have lost almost all swallowing abilities with his last set of seizures, actually he lost almost all progress he had been making with everything…eating, sitting up, holding his head up, and all other intentional movements.

Zane and I took Seton on a quick weekend trip to Ruidoso, NM. It was our first trip for just the 3 of us. Seton did great while we were there, other than trying to cut a few teeth. It was great to get away, just the 3 of us.   

Seton finally outgrew his carrier car seat so he got a “big boy racing” car seat (that’s what I like call it), because it is made by Recaro.

This summer we took a Family Vacation to Florida. We went with my parents, my sister’s family, my cousin’s family, and my aunt and uncle (16 people in all). We rented a condo on the beach. We sat on the beach, swam in the ocean and floated in the pool, and ate and ate and ate all week.  It was fabulous! I think Seton loves the ocean… like his parents. Here are a few pictures from our trip.

Sitting by the pool

In the Ocean

Our Family

Chillin' in the sand

Since we have been back we have been battling Seton’s seizures and our own illnesses. Seton has had a set of seizures almost every week until lately. These were quick episodes where he stopped breathing for about 20-30 seconds, his eyes become unaware, and his lips turn blue. Dr. Habersang said they are breakthrough seizures that are caused by his thresholds being raised due to his teething. He is cutting quite a few teeth right now. He has 7 that are in completely, but he has 6-8 that are just poking through or almost cutting his gums. He has been such a big boy through this painful process, he has not been as fussy with most of these teeth but you can tell he is uncomfortable. The seizures do seem to be slowing down, but as soon as we make any changes in his medicines they start right back up. So for now we are working on getting his seizure medicines lined out where he does not have any seizures or episodes. He is currently on 3 different medications just for seizures and a 4th medicine when he has breakthroughs. We seem to be on the right track because his total body jerking movements have decreased, his overall muscle tone is good. He is also increasing his intentional movements, like pulling his knees towards his chest, bringing his hand directly to his mouth, looking around when lying or in a supported seated position, and rolling to his back or tummy from his side. He even tried to get up on his knees and crawl, but his arms would not cooperate. Seton has been playing with his vocal cords and is learning to make several different noises& sounds or grunts & growls. Even with all his setbacks we continue to see progress and WE KNOW THAT GOD IS WORKING MIRACLES IN HIS BODY.  

He turned 18 months old on Sunday! Sorry he did not want to open his eyes for any of the pictures. 

He is such a big boy now! 

He has so much hair, it is getting longer, thicker and he has yet to have his first hair cut. We are looking for a way to style his hair.
I played with his hair one day and he had many different styles, here are a few. 

Straight up

His normal style - Messy

It is very curly when it is wet.  This is his smile, I think.

Just to show its length... it is usually curled up in the back and is right at his collar. 

We have been unplugged this summer from the blog and writing updates, and for that I am sorry. We are still learning how care for Seton, be a married couple with a special needs child, and LIVE every day. God has truly blessed us with Seton, and taught us so much. We are thankful for all of our readers that pray for Seton and our family. We are thankful for all God has done in our life and given us all the people that help us take care of Seton each week.

We still believe that Seton will be fully healed, someday. We thank God for Seton’s healing everyday, not just the progress he has made but the progress God promised us he will make.

Jeremiah 33:6

⁶ “‘Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security. (NIV)

14 Months Old & Prayers Needed

Seton will turn 14 months old tomorrow, and we are about to celebrate my 2nd Mothers Day, for that I am extremely thankful!
Seton has been having a rough time over these past couple weeks. He can't get comfortable, can't stop shaking, can't quit coughing, his button is leaking again, he can't sleep...and the list goes on and on. A few weeks ago we thought we had turned a corner and he was doing better but it didn't last long. He needs your prayers, we need your prayers. It is so hard as a mom to sit here and watch him struggle or fuss and you don't know how to help him.

We saw Dr. Habersang yesterday to try to get some answers for Seton.
We are increasing his sleep medicine, but not his Baclofen (his muscle relaxer), because his shaking (jitteriness) is not muscular or his CP...it is seizures.
We went this morning to get blood drawn to check his vitamin D and phenobarbital levels. He did so good and they got plenty of blood on the 2nd stick! Which was a miracle! He only screamed at them one time and fussed only a little bit! Such a big boy! As soon as we get those results we will make some changes, to help with his seizures.

Being a big boy, letting them poke him looking for a vein. 

His allergies have flared up like everyone else in town which it causes him to cough more and have more drainage. Which also makes it hard for him to get comfortable.
He finally got comfortable yesterday in his new nap nanny (Thanks Kelly!) for a few minutes. He looked so comfortable I just had to take a picture.

I think he is trying to hide from the camera, just like his daddy ! :-)

I hope all of his health issues are resolved when we get his seizures under control. We have been making plans for the first summer he can enjoy. Last summer was spent in and out of the hospital, so we are looking forward to this summer! We will be spending time in the pool with Seton and having therapy sessions in the pool. We are also planning Seton's first plane ride and trip to the beach! I will be sure to take lots of pictures and update you all as our summer adventures take place. 

I hope you all have a great week. 

Shawna 

³ Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, ⁴ who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. ⁵ For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. ⁶ If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. ⁷ And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.

1 Corinthians 1:3-7 (NIV)

The Party

I know you all have been patiently waiting for an update so here it is… The past month has been pretty busy in Seton’s world, but I will cover His Birthday Party & Spring Break today. 

First -- SETON”S FIRST BIRTHDAY Party!

My mom and sister worked so hard to help me get ready for Seton’s FIRST BIRTHDAY PARTY!

THE CAKE – My sister is so talented

Seton was very interested in that big cake

IS THAT FOR ME??

WOW THAT'S BIGGER THAN ME!

Digging In

Tasting the Icing

We were very proud parents

Seton was being past from person to person and he did so well! He did not get fussy one time…I guess he knew it was a party!

Seton is in the middle being moved from one lap to another

Sitting with his Great Papa

And with his Great Nana

The Extra Sweets 

A small portion of the 96 cupcakes! 

The Party Favors

The Decor! 

View from the Street

Front Porch Planter

Streamers above the Cake

Entry Streamers

The Table and High Chair Waiting for Seton

THE PRESENTS!! 

Making sure he gets a good taste! 

His Shirt

Spring Break

We did not do anything different over Spring Break, other than enjoy the fabulous weather. We took Seton and Laney for a walk almost everyday. Seton did have his EEG and an appointment with Dr. Habersang.

Laney gets too tired and has to rest in Seton's stroller

Riding in his wagon, it was a little bumpier than his stroller. 

Next the EEG…

As we drove up to the hospital, memories of the last year flooded to our minds. Zane even told Seton, “Buddy last year I was making this drive every morning about this same time, only you were not with me.”  We went through the very familiar registration process and tour (“ I am going to attach this bracelet to his carrier instead of his arm” … “The closest bathrooms are here on your right, if you need them while you wait” and “Here is your pager, it will go off when they are ready to take you back for your test”) I was just happy that it was the first time in several months, we were not going to the radiology department and none of the BSA workers  said, “You are back again”!

Seton did really well through his EEG. We sat in a big recliner and snuggled for an hour.

Next was Seton’s Appointment with Dr. Habersang. Everything was good news there. The EEG showed the same spikes as his last one, which is activity in the back of his brain that is a precursor for seizures. His Phenobarbital levels were in a good range, but his Vitamin D levels were very low. He did however had 5 seizures in the following 2 weeks. So we increased his Phenobarbital dosage and he has not had another one.

I know that is not everything but it is a start. I will begin working on the next update, so hopefully I can get it up this week.


"And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work."

2 Corinthians 9:8 (NIV)

DAY 50 - 1st Birthday

I thought I’d write a blog post so no one forgets me J  Shawna has done a wonderful job of keeping things updated and driving the 50 days of prayer for Seton.  I, on the other hand, have fallen down on the job a bit as I cling to the merry-go-round of life, spinning faster and faster.

As I reflect on our life and journey over the past year, I am flooded with memories and emotion.  From Shawna and I standing in our living room sobbing after learning for the first time what we were about to face, to preparing the celebration for Seton’s first birthday party, we’ve experienced more of life than I ever thought possible.  I am overwhelmed.

So many instances, both good and bad, have shaped my heart, my personality, my existence.  These are some moments I want to share…and never forget:

Devastation of thinking life could end before it starts

Realizing every thought of control I had was a farce

Witnessing the miracle of birth and the look on my wife’s face as she saw our son for the first time

The overwhelming power of family, friends, and community

Inexpressible pain and fear as I woke so many mornings

Unmerited Grace and Mercy

Unconditional love

Cherishing moments holding my son, fiercely praying those opportunities wouldn’t cease

Bringing him home to live when we had been told he’d surely die

A new understanding of Mother’s Day and Father’s Day

Cooing

Graveyard nursery shifts

Family vacation at Dairy Queen and a nursing home

Knowing the best food at the hospital (and the names of most of the staff)

The firsts of Easter, Thanksgiving, and Christmas

Hanging out on the couch watching TV

Pictures, pictures, and more pictures – I don’t say cheese

The baby mullet that mom wants us to cut

The perfect symphony of simultaneously shooting snot-rockets from both nostrils while destroying a diaper

And to that effect, how much poop a baby makes (seriously - it’s just milk)

I could continue, but I won’t prolong this for you.

We still long for “normal” milestones of life like smiling, crawling, and playing, but our hope is securely 

placed, and we will persevere.  So much progress has been made, and there’s so much more to come.

I can’t say too much that I haven’t said before, but some things bear repeating.  We’re blessed.  We’re humbled.  We’re amazed.

Our family and friends tell us we have a testimony.  I’m not sure what to think about that, but I feel like we’re a privileged part of a living example of our God at work.  If anyone else sees it too, praise God.

Thank you for walking with us, thank you for praying for us, and thank you for loving us.

Attitude out of the gate

My monkey man today

Today's prayer request is for Seton's future and our future as a family. We look forward to many more years and birthdays to celebrate with our boy. He is such a joy and a blessing to us each and every day. 

- Zane

Give thanks to the Lord, for He is good; His love endures forever – Psalm 107:1

Day 49

LET THE CELEBREATIONS BEGIN!! Tomorrow my baby boy will be ONE! I can not believe it is here. Last year, Zane and I were finishing up things at work and packing. Then we headed to the hospital for a few days that I will never forget! From the first night there, Zane made fun of how many things I packed and then he had to sleep on the window seat… to the next night having a baby in the NICU… and the last night they let me stay and I left my baby at the hospital and cried all the way home. When we headed to the hospital that evening for the induction we did not know what our future held. We knew one thing… by the end of the following day we were going to have a baby boy. We did not know if we would have him on earth for a few minutes, hours, days or even years. He would be our son no matter where he was. He still did not have a name other than “Baby Boy Oliver”. We had no idea what kind of a journey God had for us, and we still don’t. God forgot to include us on the decisions when he was planning our life! J

One year later here we are with a son, Seton Blaine Oliver, who will be one tomorrow. God is so good and works in ways we could never imagine. How amazing is our LORD!

Seton did not have a great night last night but it wasn’t awful. He did wake up a few more times and did not get into a real deep sleep ever. He is still coughing a bit more than normal so we are going to up the breathing treatments to see if we can thin out some of his mucous and secretions for him.

We took Seton for a walk yesterday (with no pants) to absorb a little vitamin D and enjoy the warm sun, since it was 80 yesterday and it is going to SNOW today. We did forget to put on his sunglasses... 

Enjoying the sun on my legs! 

Laney was worn out and hopped up in Seton's Stroller to finish the walk. 

Today’s prayer may seem a little silly but it is something that I have been praying and thinking about for a few days… I pray that Seton has an interest in his birthday cake that he just tears into it (sorry Tiffani, I know you are working hard on his cakeJ) while we are taking pictures and singing ‘Happy Birthday’. That would just make my day!

I hope you all have a wonderful day!

~Shawna~

“In their hearts humans plan their course,

but the LORD establishes their steps.”

Proverbs 16:9

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

Day 48

Well Seton did not have a good night last night. He did not sleep much after 3am. He coughed every 15-30 minutes. He did pretty well from 9pm-3am, I think Zane only got up for him a couple of times. He has been coughing a lot more this morning also. He may be producing more secretions due to a teething or something.

The skin around his button is looking so much better! We know that he is not allergic to the button, but something on his old button was causing him problems, maybe it was too short and pinching his skin, maybe it just needed to be cleaned…who knows? We are going to pray today that his skin continues to heal and get better and that we never have to go through that again!

~Shawna~

Praise the LORD.

   How good it is to sing praises to our God,
   how pleasant and fitting to praise him!

 ² The LORD builds up Jerusalem;
   he gathers the exiles of Israel.
³ He heals the brokenhearted
   and binds up their wounds. 
⁴ He determines the number of the stars
   and calls them each by name.
⁵ Great is our Lord and mighty in power;
   his understanding has no limit.
⁶ The LORD sustains the humble
   but casts the wicked to the ground.

 ⁷ Sing to the LORD with grateful praise;
   make music to our God on the harp.

 ⁸ He covers the sky with clouds;
   he supplies the earth with rain
   and makes grass grow on the hills.
⁹ He provides food for the cattle
   and for the young ravens when they call.

 ¹⁰ His pleasure is not in the strength of the horse,
   nor his delight in the legs of the warrior;
¹¹ the LORD delights in those who fear him,
   who put their hope in his unfailing love.

Psalm 147:1-11

Day 47

Seton had a great night last night. He slept all night from 8:30pm – 6:30am then went right back to sleep until 8:30am…that’s pretty much 12 hours! This new medicine is helping a lot. We have to give it to him 2 times at night, 4 hours apart, I still have not decided on the best schedule for us to get up and give it to him...but we can work that out as we go since we are getting more sleep! I can definitely get up 2 times a night instead of 30 plus!

Today’s prayer request is for his congestion, coughing, and swallowing ability. He does really well some days and other days it seems just too much for him. He coughs continuously throughout the day and has all year…can you imagine coughing all day everyday for an entire year! The only way I can compare to what he goes through daily is like when you take a drink and swallow wrong and it makes you lose your breath and cough…that is what he does all day every day. I would love for his lungs and throat to be able to take a break. I pray for his tongue and throat to work properly so that he can have a permanent break from coughing.

~Shawna~

² Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.

Romans 12:2 (NIV)

Day 46

It is Monday and I am a little behind this morning. I have been snuggling with my boy all morning. He slept pretty well last night. We will continue that feeding and medicine schedule and see how it works for him. He could have just been really tired since he did not sleep much Saturday night and only took one 30 minute nap all day Sunday.

Button update: His skin is looking better around his button, it is still a little irritated looking but it is getting better again. J The skin under the button we taped to him never even turned red. So I am waiting to see what Dr. H has planned for our next step.

Today’s prayer request is for strength. Seton needs strength is several muscles to sit up, hold his head up and learn to walk and crawl.

Thank you for your prayers!

~Shawna~

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

            Psalm 28:7

Day 45 -- only 5 more to go

Seton had a fairly good day yesterday; he did not sleep much during the day and was never really fussy either. His button was looking amazing! I say "was" because last night when I cleaned it before bed it was red and bleeding AGAIN! The skin under the other button (the one we taped on to check for an allergy) looks normal, just a little red from the tape. So we left it on for another day and we will see what it looks like today. I hate that we can not figure out this silly button, but I have to say this is wwwaaayyy better than the ng tube he had before this one. We have not been to hospital in several months; I actually can’t remember the last time we were there. I guess it was in August for his g-button surgery.

Seton did not sleep well last night, even with his new medicine. So we will try something a little different with his medicine and food tonight. We did get a new feeding pump and it worked perfectly last night.

I feel like we are always going back to square one. Some days are great, and then it all goes down hill. Seton has improved so much over the past year, but like I said a few days ago…This is not God’s best for him. I know God has bigger plans for his life and he will not only be a little better, he will be completely healed.

I want to pray for all of these things we have been waiting on to show progress, his skin around his button, his sleeping patterns, and complete healing. I pray that he reaches square 2, then square 3, and so on…that he continues to get better daily and not worse or go back where we started.  And that we find answers and solutions to his button problem.

Thanks again for your prayers!

~Shawna~

I will leave you with one of my favorite verses.

¹¹ For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11

Day 44

Good Saturday Morning!
Seton decided he wanted to be a good boy and sleep pretty well last night for his daddy. We started his new medicine that will help him relax more at night. It did help, 12:30am the 2nd dose helped until 5am. So we will have to play with a little and see what 2 times a night work best for him and us. We also have to plan his feelings around it because it has to be given on an empty stomach which means (for him no food 1.5 hours before and at least 0.5 hours after.
Our problem last night was his feeding pump...it kept beeping and showing error messages every time I turned it on. So I just gave up and went to bed. I assumed Seton would wake up if he got hungry and I guess he did not.
Today's prayer request is for something completely different...his veins. We still have to go back to the lab and have blood drawn again. We will wait a few days and probably go the week after next but I want to pray that his veins will expand do they are raiser to stick. Dr. H (jokingly) recommended some weight lifting for him because heavy weightlifters always have big veins from the repetitive resistance. Haha maybe I should go get Seton some weights today. :-)

I hope you all have a wonderful relaxing weekend!

~Shawna~

The Lord will rescue his servants;
no one who takes refuge in him will be condemned. (Psalm 34:22 NIV)

Day 43

In one week Seton Blaine Oliver will be ONE! God is awesome and has truly blessed us with this sweet boy!

We spent the morning at Dr. H’s office and we now have a new game plan for Seton’s button. The skin around his button no longer looked infected to Dr. H, only very irritated and broken down. We removed the current button (1.0 cm long) that he has and put in a different one, the new is a 0.5 cm longer. It is the old button (1.5 cm long) we had when his tummy was still swollen from his surgery.  We took the 1.0cm one out and cleaned it really well, then taped it to the right side of his tummy. We are going to check his skin for allergies to this type of plastic. There are several different brands of feeding buttons on the market. So for the next 1-3 days Seton’s will have 2 buttons on his tummy. I am supposed to remove the tape and check the site every 24 hours and note and changes in the skin. Since the new button is a little bit longer we are expecting it to leak more, hopefully not causing any more skin break down or irritation.

Then we discussed blood work… Seton’s Phenobarbital levels are still in a good range so we do not have to increase his dosage! Yippee! That made me very happy. They also tested his Vitamin D levels and they were very low. So we are starting him on some vitamin D drops for the next few months. Dr. H said that when your vitamin D is low it causes the muscles to be more spastic and have higher tone. Like I said yesterday, they did not get enough blood to do his allergy testing so we will go back in a week or 2 and get blood drawn for that testing.

We also discussed Seton’s lack of sleep over the past few weeks and he gave us a prescription for a medicine that slows down the sympathetic nervous system to help him relax and sleep better.

 Today's prayer request is for everything to work as Dr. H planned and that we find out the true cause of all his button trouble. 

Overall it was a good visit! I promised some pictures of his battle wounds from giving blood.

~Shawna~

Contend, LORD, with those who contend with me;
   fight against those who fight against me.
2 Take up shield and armor;
   arise and come to my aid.
3 Brandish spear and javelin
   against those who pursue me.
Say to me,
   “I am your salvation.”

Psalms 35:1

Day 42

We are going to pray for his skin around his button again. It started doing better last week but this week his skin turned really red and irritated around the button. Then yesterday it started bleeding. We are going to see Dr. Habersang first thing in the morning, so he can check his button and also look at his blood work results from yesterday.

Seton was such a big boy while they were attempting to draw his blood. He is so hard, even with the extra water we gave him. It still was not enough. They stuck him 4 times trying to find a good vein. They got 2 veins but did not get enough blood from either one of them to complete all the blood tests. They did however get enough to test his Phenobarbital levels, which Dr. H will look at tomorrow. We will have to go back in a few weeks to get the allergy testing done. Seton only cried one time when they stuck his foot and only fidgeted a few times trying to get his arm back.  Here are a few pictures of my BIG boy, trying to prove it anyway. 

waiting on a supervisor to come feel my veins

Mom, what are they doing to me?

relaxed after being stuck once 

 I will post pictures of his battle wounds tomorrow. 

~Shawna~

The LORD is good to those whose hope is in him, to the one who seeks him;

Lamentations 3:25

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