Seeing Clearly

1 Timothy 6:6 

Now there is great gain in godliness with contentment

I just realized I haven't posted a picture of Levi with his new glasses on the blog. We are bad about giving updates on Levi through facebook as well as posting pictures but not putting them up here. I will definitely keep this blog going for the forseable future but if you want to more updates on our family feel free to find us on Facebook. I guess you would search Trent McCumbee and Anjie McCumbee on there. Anjie actually posts more updates on there than I do. We will both be glad to accept your request but maybe just put a note in it if we don't know you well that you follow the blog.

Anyway just a quick update. Levi is 14 months old actual but about 9 or 10 months adjusted. He weighs about 17.5 lbs now. We are learning more and more just to live in a content manner. Levi is definitely still developing which is a great sign. It is just very slow compared to most kids. We know God has a plan but its still human to want things to just go away. I truly believe God has brought us to a new stage of growth and contentment is what he is teaching us.

He just got his glasses which will help some but its hard to keep them on him if you would imagine. He loves smiling and laughing and making a lot of different noises but no words yet. You will not meet a cuter or happier baby than Levi.

He just finally broke through a tooth and another one came in right beside it. So now he has two teeth on the front bottom. For some reason they came in super crooked though!

Levi still can't sit on his own for long but you can tell he is close as is back is straighter and not hunched. His muscles are getting stronger. He actually can now push himself up off of our chest when we are sitting on the couch. Its supper cute because he will push back and sit on his knees and just let a huge grin. He isnt quite strong enough right now to push up while laying on the floor though.

Levi has been off of his O2 for about a month now! Praise God for that right? After a year of needing support thats a huge step. Its also less stressful on us to not need to lug it all around. We took him out some where last weekend and were just blown away by how we finally felt like normal parents. Most people would take it for granted. You might even think we are crazy for this. We realize how extraordinary Levi's life has been and we feel blessed for that but some times you just want to blend in.  

Levi's biggest issue right now could be feeding. This is very common in preemies but that doesnt make it less frustrating. He went through a period of eating very low volumes of fluid. He would vomit everyday for weeks. He quit eating his baby food altogether. We just recently switched him over to a different formula that is more for older kids. It smells like a milkshake and he really likes it. We still havent gotten him back eating his food well though. We are finally getting some OT help soon. Sometimes the wheels turn slow but we are thankful that its coming. Please pray for this issue specifically.

Another more major issue is his left side weakness. I am not sure how much I have told about that here? Anyway he basically doesnt use his left side nearly as much. Picture him just being extremely right handed. If he is holding something in two hands its probably because we moved his left hand over and put it there. Its not a paralysis or anything. His Physical therapist is great though and has stayed positive on it. Please pray though that he will learn to use his left side more. Its possible if improvement doesnt come he would get slapped with a CP diagnosis.

Comforter

John 14:26, "These things I have spoken to you, while abiding with you. "But the Helper, the Holy Spirit, whom the Father will send in My name, He will teach you all things, and bring to your remembrance all that I said to you.

Rom. 8:26, "And in the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words"

Eph. 4:30, "And do not grieve the Holy Spirit of God, by whom you were sealed for the day of redemption."

Last year when we started this blog it was purely out of a desire to share with friends and family Levi's life and progress. I will be the first to admit that and also the first to admit it was somewhat out of selfishness. Although we are humbled that so many people love our son and are interested in his well-being. It can be exhausting to answer the same questions over and over about his health. So from that sprang up this simple idea of "Loving Levi Like Crazy". As you know the blog grew into much more. This blog has become a place of emotional release for Anjie and I. It also has become somewhat of a window pain into the world of parents with sick children and the struggles that come along with that. From someone who has never written a blog post in his life it has become quite an enjoyable hobby for me. I have had many people proclaim to me over the past year "Trent I didn't realize you could write like that." While it's hard to tell if that is a compliment or not all I can do is agree "Yeah me neither". The truth is writing my thoughts on this blog has turned out to be a huge blessing to me. I have discovered truths about myself that I never knew. I hope to continue for years to come even to the point of one day allowing Levi to share here also.

I promise there is a point to all of this. It just took me a while to get here. God hit me with something today that in the christian life may seem absolutely simple. For some reason though I missed it and for that I have to apologize. It's the Holy Spirit! The truth is I can't write like this without His help. Most of these thoughts are not mine at all. I have just reported to you the truth's he is teaching us along the way. If you have been impacted by this blog at all I can promise it has nothing to do with Trent, Anjie or Levi. Its the Holy Spirit! He is our helper. He is our comforter. He is our leader through all of life's trials. He is our teacher during times of trouble and times of peace. When we learn lesson's in life He is the one who teaches them. When we remember lesson's taught to us in scripture He is the one who brings them back to remembrance  He is the one Jesus spoke of in John 14:26. When Jesus left us he did not leave us alone to fend for ourselves. Even though I have always known these things about the Holy Spirit I haven't always given Him the credit. It's all to simple to give credit to ourselves when we stumble upon wisdom. I pray that all of you will realize the same thing. Allow the Holy Spirit to dominate your life. Don't push Him onto the back burner for any reason. Let him lead you through all decisions in the future.

Now for the update on Levi. He is now 16 lbs 11 oz. Which is crazy because he was sick for a few weeks. We are past the worst of it though. First Levi had an ear infection that gave him some trouble for 5-7 days. As soon as he got over that he got his first cold. The cold has really rocked his world. We are just at a point the doctor wanted to pull him from his 02. He was just using it at night anyway. Because of the cold he landed back on 24/7 o2 for a few days. We have since weaned him back to over night. We actually pulled him completely off for last night so we shall see. Please pray he can sustain on his own without 02. These sicknesses really threw off his feeding. For preemies that usually one of the biggest struggles. We have really had a time getting him to take enough formula and he has been refusing baby food altogether. Things seem to be slowly getting better. In other big news Levi is getting glasses! His eye doctor believes he is very nearsighted so this should help his development. It takes 4-6 weeks to have them made so we will get a pic up as soon as they are in. Physical therapy is moving along. Levi is now able to sit for a few seconds at a time on his own. He is doing much better on his tummy. Things are slow but our prayer is that he will become mobile in the next few months.

Enjoy the pictures!

Happy First Birthday Levi!!!

Psalm 139:16

¹⁶ Your eyes have seen my unformed substance; 
And in Your book were all written 
The days that were ordained for me, 
When as yet there was not one of them.

I can't even begin to describe the feelings we have been experiencing lately. Just absolute thankfulness for God's provision over this first year. He knows every day before it happens. He knew a year ago today that Levi would survive even though we doubted. He knows right now all that will come ahead for our son. Please join us in thanking God for a year of life for Levi!

Levi if you ever read this down the road always remember this. God spared your life for a reason. You owe every thing you do to Him. We will do our best to point you in the right direction as you grow. Ultimately you will one day to have to make these choices on your own and we pray that you will choose to become a slave to righteousness rather than to sin (Matthew 11:28-30). We love you more than words can possibly say. You inspire us every day.

I would like to give a quick medical update to everyone that continues to pray. We get asked a lot "How's Levi doing"? Well its a lot easier to say just fine than to describe in detail all that he deals with. We aren't lying because he has done remarkably well since coming home. Only one sickness in 7 months which was an ear infection last week. Here are all of his issues along with how he is faring with each.

Details:

-VP Shunt - After the shunt placement Levi sailed on. He hasn't had any issues but this will be a life long maintenance issue. He is always at risk for malfunctions which would require future surgeries.

-Eyes - Levi's focus is getting better. He still has trouble locking in on objects. The eye doc has deemed him to be near sighted already. Some of this could get better over time. Most likely he will get glasses at a young age. If the focus issues dont clear up he may need surgery down the road for that.

-Airway/lungs - His airway is healing and getting stronger. He still has a long ways to go though. The path he is currently taking is good and wouldnt require surgery. He still relies on O2 for eating and sleeping. We may be pulling him off completely soon. If you watch him breath you would notice increased work compared to other babies but he is improving.

Physical - Levi gets PT twice a week currently. He is getting stronger. His legs are strong but his trunk is weak. He currently can sit up and push up with help. He is improving and we think he is getting very close to becoming more independent. He loves standing and bouncing in his jumper now. He does roll over pretty well now too. His left side is weaker than his right. We are told that many Preemies favor one side over the other though. We are seeing definite improvement.

Cognitive - With preemies in general there can be delays and disabilities. With having the brain bleed Levi is at even higher risk. We are seeing very good signs in this area though. He loves smiling and laughing now. He makes a good amount of noises and even repeats back some noises. Its still too early to tell what if any struggles he may have in this area.


Weight - Levi weighs 15lbs now! Up 31.5 from his birth weight.

All in all he is doing great considering where he was a year a go. He is more like a 6-7 month old than a one year old. We have a ton of work to do to catch him up. Levi has to be taught some things that babies normally learn on their own. Anjie and I are up to the challenge though! We are going to fight for this kid. 


PS We had a small party today to celebrate! As much as we wanted to throw a big bash it cold season and thats not the best idea for Levi.

Merry Christmas From the McCumbees

Sorry this is late but we had to wait until all of the Grandparents got to see his Christmas pictures before I could post them online. We are so grateful to have Levi with us this first year. We are so grateful for all of you and the support you have given us to get through what was the toughest Anjie or I have had to endure. Its all worth it now. Thanks again for you prayers, the financial gifts and the encouragement. We look forward to many more years of Loving Levi Like Crazy! We are so honored to share his special life with you all. We can not wait to see what God does with Him.

Plenty to be Thankful for

1 Chronicles 16:34

 ³⁴ Give thanks to the LORD, for he is good; 

   his love endures forever.

I heard an interesting perspective on thanksgiving this year. It makes practical sense but I guess I have never thought of it this way. In order for us to be thankful for something we must be thankful to someone. Its a simple concept really but I am not sure we realize that most of the time. As for us we know with out a doubt God has orchestrated many things in our lives and its to Him we are thankful. We thank him for his provision in every aspect of our lives. It can be the big things like our jobs and our health or it can be the little things like every meal that we eat. Some times though even people like Anjie and I even with a large faith in God can just be down and discouraged. Lately I have kindve been down and struggling with Levi's situation. As a father I feel like watching him struggle is the same as if I was going through it myself. So right now I am thankful to God for encouragement when I needed it. When I  prayed before dinner tonight I asked God to strengthen Levi in a bigger way than he already has. I shared with him our frustrations and asked for Him to intervene. As we ate dinner we did as we usually do these days. We put Levi on the floor and let him play. He always makes us laugh as he makes noises and sucks on his toys. Its normal for him to roll to his side but up until this point he hasn't rolled all the way to his stomach. Tonight we could tell was different though. Levi started pushing himself further and further each time he moved to his side until finally he rolled right over. We had to have been the proudest parents in the world at that moment. I must admit that it wasnt until later that God reminded me of the prayer I prayed. God showed us in a small situation that He is still here, that He is still giving Levi strength and that He does answer our prayers. You may shrug it off as a coincidence but I am not so inclined to ignore God's providence in our lives.

For Levi's prayer warriors:

-Please pray for strength specifically in his upper body

-Please pray for his eye sight. We know he is very nearsighted but his eyes are

still developing.

-Please pray for his cognitive development

Enjoy the pics and video. Levi just started laughing...

Our NICU Journey

This may be hard to watch but I wanted to share with those of you who have followed along. Our sister in law made it for us. It was more difficult than I thought because I could feel a lot the pain all over again. It was also encouraging to have the reminder of how far God has brought us in such a short time. 

The Great Unknown

Once again life is just flying by post NICU with Levi. I am losing track of time but here is an update if anyone is still checking in. Last time we asked for prayer for Levi's Chapel Hill trip. Its really fairly routine but the reason he goes is so they can track his head growth and adjust his shunt as needed. This past trip he actually had it adjusted back because his head was growing a little under normal size. Its not something you would notice but it can make a big difference in his development. Right after that he started sleeping through the night for the most part. Levi is weighing in a heavy 13lbs 2oz which is great growth from where he started this year. His growth has slowed though so we gave him a calorie boost in his formula. Levi is now being weaned from his O2 and is doing very well. He only uses it eating and sleeping now with the hope to pull him for good in January. We are so sick of having him on leashes as we call it. We cant wait to get that O2 and the monitors out of our house! 

Now everything isn't always great news. We try not to complain about anything because Levi is such a huge blessing to us. I will be completely honest with you that Anjie and I really struggle sometimes with looking into Levi's future. We realize there is nothing we can do. We realize that its in God's hand. Unless you have been in a similar situation then I promise you can't fully understand. We actually stay positive most of the time. We both see good things in Levi's development to think he may escape serious issues as he get older. It is very hard though for us to not have doubts at times. Especially when doctors tend to lean on the negative side of things. Its really hard to sort out what is real and what is opinion. They throw around Cerebral Palsy and Mental retardation as if its not a big deal. I mean statistics show only 25% of micro-preemies have serious issues long term. We know Levi beat the odds just living to this point so...why worry right? Just know its not that easy and we do lean on God often for His peace. 

This week we took Levi to his developmental appointment at the hospital. The staff determined that he is only developmentally like a 3 month old baby. Levi is today nine months old. Thats a hard pill to swallow! Its understandable after his year and we knew he would probably develop slowly but here we are trying to internalize these things and push forward giving him all the love we can. The main reason he graded low is that he doesnt track well with his eyes yet. This is understandable to us understanding his surgery history. We actually have a specialist coming next week to start vision therapy with him. Hopefully that starts to help. We see the Eye doc in November so maybe he can give us more insight into what Levis vision may be. I hope this doesnt sound like we are depressed. It is the exact opposite. I am not sure how I could possibly love another person more than I love him. This experience has bonded us together in an amazing way. I just wanted to give an insight into the emotions we deal with. Thats the only way people may be able to understand what life is like for us right now. Maybe you will pray for us? Thats all we ask...