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...

New Pics

I guess at this point we cant help but take tons of pictures of Levi's new smile. There has actually been a decent amount of development since the last update. Levi has started smiling much more frequently. He is cooing and even giggling a little when you get him excited. I know thats what babys do but for Levi we are hanging on every little sign that the brain bleed didnt have a major affect on his neuro status. Levi has also started mimicking one noise. So if we make that noise he will make it back at us. His feedings are getting easier which is a blessing because they have been a nightmare for alot of the time. Thursday Levi makes his bimonthly trip to Chapelhill. Please pray for safety and good reports from the neuro team. Please also pray for Anjie and I. The stress of this past year has really gotten to us. We really dont have many people we can leave him with so we dont get much alone time. I guess this is normal for a family with young kids. I guess its just finally catching up to us.

A Beautiful Smile!

First off all I apologize for the lack of updates. I never meant to let it slip that long. I have been worn down and we are of course busy with Levi about every second he is awake. A huge blessing we have seen in the last couple of weeks came in the form of something so simple as a smile. This may not seem huge but it is for us. After seeing Levi suffer through so much pain during his short little life its an amazing feeling to see that little smile start to develop. It also means larger things in the scheme of Levi's development. Levi not only has started smiling but also started smiling in response to us. This means a lot because it shows neuro development is happening. If you listen really close you can even here a little giggle when he gets really excited. He has also started picking up rings and bringing them to his mouth.


Other things to note are his Physical therapy is going well. We are seeing some big differences in him do to that work. Levi has seen the eye doctor and pulmanologist (lung) since the last update. The eye doc cant tell a ton right now. He thinks Levi does have vision but who know how much. He goes back in Nov. We are watching that he keeps developing and that his eye motor control gets better as he grows. If not he may get glasses soon. The motor control can be corrected by surgery but we hope that does not need to happen. The lung doctor warned us that he should have been off of O2. This means that he may have a more serious case than originally thought.   He seemed to think this was due to the airway and not lungs. Either way its a wait and see approach for that too. He will continue to see that doc and if no improvement happens they will take a look with a scope to rule out surgery on Levi's airway. Please pray that Levi need no more surgery! He is not out of the woods yet. 


With cold and flu season coming up we will have to be even more careful. Please pray that Levi doesnt catch anything. If he does his airway is very unstable and he is at high risk for hospitalization.

Chapel Hill Update

Yeah I know this is pretty late and people were curious about how the Chapel Hill checkup went. It was actually last Thursday and everything checked out fine. He saw his Neuro team and all they really did was look at his shunt and measure his head. Every thing looks good and he goes back in two months. Then he saw ENT and they said he looks good to follow up in four months. His PT is still working on him with some tightness in his shoulders and calming himself. His upper body is behind also. Coming up he sees the eye doc to see if he needs baby glasses. Later in the month its the pulmanologist to see how he is doing with his lungs and oxygen requirements. Anjie and I do see progress here. I know alot of people want to know if he is on O2. He is but on the lowest settings and actually is fine off of it while sleeping. Please continue to pray for his progress that he will catch up to his age development.

6 Months Old

I know my posts are much more spread out but please believe me that no news is good news. Levi has been staying very busy with appointments. The consensus is that he is about 2-3 months developmentally. This is good since his due date was May ninth. He is right on track for that. We feel so blessed right now to have Levi doing so well. Of course he has a long way to go but God has seen him  along this far. His physical therapist is working on some upper body strength and calming techniques. His eye exam was yesterday and his retinas look good although is showing signs of being nearsighted. He has been referred to a pediatric optamolagist to take a look. Before Levi has been seeing a specific retina specialist. So now this new Doc will focus specifically on his sight and possibly putting him in glasses in the near future. That may sound crazy but it can stunt his development if he cant see. He will not be able to learn to crawl and walk as well if he cant see well. 

So I hope that is a good update. Just know that those of you that are praying are having your prayers answered. We thank you so much for joining with us in that. Please pray this week for his trip to Chapel Hill Thursday. He will see the Neuro team and and ENT Doc. Please pray for safe travels.

Levi's great grandma got to hold him for the first time this weekend

Growing Up

As you can imagine its been a very busy time in our lives. Levi is more than a handful to care for and has be staying busy. He has had all good reports so far from his doctors. The physical therapist worked with him on Friday and she said he needs work on his upper body. He was super fussy but now seems to be getting a little past that bad stage. He has gas and reflux but we are working on the gas by using different nipples. Levi is still on oxygen as you can see. We think he will be completely off in the next couple of months but for now we know he needs it. He went to his developmental appointment yesterday and the doctor said he looks good. He called him chunky which given his past is a complement. The psychologist said that he is about 2-3 months adjusted age developmentally. Thats really very good since he did have the brain bleed. His due date was May 9th so he is right on track with that. He was 10lbs 2oz at his last visit! 

For Levi's prayer warriors:

For him to get off oxygen

For a safe trip to Chapel Hill next week (neuro appt)

For the reflux to go away

For his upper body strength

We know God has been with him so far so we must have faith He will see him through the rest of this.