Month 2_Day 14 - Great Weekend

1Chronicles 16:34 Oh, give thanks to the LORD, for He is good! For His mercy endures forever.


We are so thankful for a good weekend. He is so good to us. He is of course good even through the rough times. I think we just tend to not give Him the credit untill after the fact. We know that hindsight is always 20/20. He is the beginning and the end. He is the same every single day. He doesn't ever change but for some reason we dont give him that credit. We live as though His love is conditional. We live as though He only loves us when things are going well. The truth is we must learn how to recognize his love in the midst of the storm instead of after it passes. I am not saying our storms have passed. We are in a calm right now and I am overwhelmed by His love. I am just trying to give Him the praise He deserves while I am alert to it.

 

Levi had a great weekend. He had a few little hiccups but not anything he didnt handle. He is still plugging along. He is relaxing fairly well. He is getting weened off of the steroids. He Still has the helium right now but it will probably be weened tomorrow. The doctor is putting him on even higher calorie formula. Levi held his weight for a few days so hopefully he is on the upswing.

 

 

For My prayer warriors

 

Levi - Stay off the vent. No infections. Good feeding. No swelling.

 

Trent & Anjie - Rest

 

Check out Levi. He is under all of that stuff somewhere. I cant wait to see his eyes again.

 



Month 2_Day 13 - Still Off of the Vent

1 Peter ^6(M) Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, ^7(N) casting all your anxieties on him, because^(O) he cares for you.


I am very tired right now. I didnt sleep well last night due to be anxious. Levi still has a long way to go. He hasnt proved himself quite yet. This is already going way better than last time though. they should be weening him off of the helium in the morning. After that hopefully he will slowly get weened off of vent settings as he proves himself. The next big step is to switch from the non-invasive mask to cpap. Levi is still eating well. He tolerated the formula really well which should help him pack the pounds on. He seems very comfortable and is sleeping well. One more thing to add to Levi's list. He will definately need a hernia procedure before he leaves to go home. This little boy has been through more in his short lifetime then most of us ever will. It is such a blessing to know him.

For my prayer warriors

Levi - Stay off of the vent. Tolerate feedings. No infections. No swelling.

trent & ANjie - sleep & peace


Off of the Vent .- Update

I promised a update. Levi is doing great so far. His chest xray was not perfect so they increased his pressures. He is requiring low oxygen settings. He has had a couple of short episodes but nothing like last week. Please keep praying.

Month 2_Day 12 - Off the Vent

1 Thess 5¹⁶ Rejoice always, ¹⁷ pray without ceasing, ¹⁸ in everything give thanks; for this is the will of God in Christ Jesus for you. 

You want to start memorizing scripture? Here is a great place to start. Vs 16 Rejoice always & Vs 17 Pray without ceasing. It means nothing unless we apply it to our lives. I haven't been living Vs 16 nearly as well as Vs 17. I think we have no choice to pray continually right now. It's very easy to not rejoice or give thanks though. I mean there is no excuse of course but our flesh makes that choice very easy. Right now we are really rejoicing.

Levi did get off of the vent today...almost. He got the tube out. He still has a ventilator but its feeding a mask instead. The approach was much different this time. He even has some helium added in to keep his lungs inflated. Levi will probably always walk to a different beat. He is doing very well so far but dont stop praying. Another change is high calorie formula every other feeding. They want to try and pack on the weight. I will try to post an update in the morning with progress through the night. Pray especially for no infections. The steroids break down the immune system.

For My prayer warriors

Levi - To stay off of the vent. Tolerate formula. No infections. No swelling. No apnea.

Trent & Anjie - Peace!

Check out the size of these helium tanks.

Levi resting very comfortably.

Month 2_Day 11 - Back On

Psalm 18

 ¹ I love you, LORD, my strength.

 ² The LORD is my rock, my fortress and my deliverer;
   my God is my rock, in whom I take refuge,
   my shield^[b] and the horn^[c] of my salvation, my stronghold.

I feel like we are going into battle tomorrow. Levi is supposed to be extubated tomorrow. Anjie and I are very nervous. We just can't handle watching him struggle. All we can do is run to our fortress. All we can do is trust him to give us strength and protect us. We shouldn't even be worried. We know that God is ultimately in control of this. What we don't know is what He plans to do. Thats what makes us nervous. Its the fear of the unknown. Its the unwillingness to live outside of our comfort zone. Please pray for calm nerves and peace. Most of all pray for Levi to have a smooth transition this time.

Levi is doing really well ever since he started the steroids. He has been weened downed on his settings alot. He seems comfortable enough for now. Its hard to think of anything else here. Just pray that he stays off the vent this time.

For my prayer warriors

Levi - To stay off of the vent. No more infections. Tolerate feedings. No swelling.

Trent & ANjie - Peace



Month 2_Day 10 - Hair

Luke 12 ⁶ “Are not five sparrows sold for two copper coins?^[a] And not one of them is forgotten before God. ⁷ But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows.

Levi actually has alot of hair for his age. He seems to be growing more and more. God knows exactly how many he has. He loves Levi and has a plan for him. We must rest in that truth. He is going to see him through this. I am really starting to hit a wall now. Its wearing on me everytime we have to go back up to that hospital. We really have to continue to fill ourselves with his truth to get through this.

Levi is still doing well. He has responded to the steroids and will be extubated Friday if all goes well. We are still very nervous about this. He was still up on his weight tonight so it must be for real. His head circumference remained the same over the past few days. It is really a blessing that he hasnt had and swelling to deal with.

For my prayer warriors

Levi - No more infections. Get off the vent. No swelling. Continued feeds.

Trent & Anjie - peace when he comes off

 



Month 2_Day 9 - Ocean

Verse 1:
He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realise just how beautiful You are,
And how great Your affections are for me.

Pre-Chorus:
And oh, how He loves us so,
Oh how He loves us,
How He loves us all

Chorus 1:
Yeah, He loves us,
Whoa! how He loves us,
Whoa! how He loves us,
Whoa! how He loves.
Yeah, He loves us,
Whoa! how He loves us,
Whoa! how He loves us,
Whoa! how He loves.

Verse 2:
We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
So Heaven meets earth like a sloppy wet kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…

Find More lyrics at www.sweetslyrics.com
Chorus 2:
He loves us,
Whoa! how He loves us,
Whoa! how He loves us,
Oh how He loves.
Yeah, He loves us,
Whoa! how He loves us,
Whoa! how He loves us,
Whoa! how He loves.

Anjie and I love the Dave Crowder Band. Their music has been the center of many praise and worship sessions for us. Yesterday we recieved a card in the mail from the Dave Crowder Band. It was signed by all of the band members & said they are praying for us and Levi. Its amazing they would even take that time to encourage someone they dont know. Its even more amazing the friends we have. To go out of your way to make that happen is a beautiful display of love. By the way that one is going straight in the scrapbook. I say all of this because they sing this song. Its been one of our anthems during this time. DCB didnt write the song but instead a man named John Mark Mcmilan did. He wrote it after losing a good friend in a car accident. He was just floored how much He does love us in the midst of these trials. It is amazing really that He does still love Anjie and I. After all of the frustration, anger and distrust we have shown him. After consistantly showing a lack of faith. He still allows us to swim in his ocean of grace. I am unaware of these afflictions eclisped by glory...

Levi is still growing. I haven't posted on his wieghts much because they fluctuate. I only do now because he has been above 2 lbs for three days now. Tonight he weighed in at 2lbs 3oz. The doctor is concerned its fluid but he looks bigger and we feel he is finally hitting a good growth spurt. The doctor started Levi on steroids again today. If he responds he will be most likely extuabated again in the next couple of days. This is making us nervous for sure. After the experience last week out nerves are shot.
He really needs to get off of the vent. Lets pray he is strong enough.

Levi - To get off the vent. No more infections. Continue to eat well. Minimal apnea once off of the vent.

Anjie & Trent - Rest & peace