EEG Results

Wow I just realized its been since October since I have given an update. Time is really flying by. Its been a really eventful month. 

One big development is that Levi got measured this week for leg braces. He is just so low tone in his legs that he needs some help to get upright. We are excited to see if we get any results. He clearly wants to get more mobile. He spends a lot of his free time rolling all over the floor. Its been a long slow process but Anjie and I remain positive that he will walk one day. The desire is clearly there. 

I will try and explain this second big development as best I can but I am not a doctor. Starting back this spring Levi began throwing up every time he woke up from a nap. We thought that was really odd but it was explained away has just being reflux. Over time it actually turned into him throwing up and having what we describe as spasms. His arm would fly up and his body and head would jerk. This would repeat multiple times and then would pass. This has been like clockwork for months on end after every sleep. It made it difficult to get his calories in because he threw up so often. It also was frustrating because we didn't really have answers as to what it was. For a while it was thought this was something called Sandifers Syndrome. This is a pain response to something like reflux, This was frustrating because there really isnt a cure for it but in a way was relieving because sandifers isnt harmful and isnt considered neurological. 

Fast forward to now. After seeing many specialist we finally landed in front of a Neurologist. His first gut feeling was that the other doctors may have been wrong. He immediately felt that Levi was having Seizures and the seizures are causing the reflux. We were skeptical at first but Levi has now has two EEG tests as well as a video test. After further review his doctor diagnosed him with mild clonic seizures. While this is a shock to us we are relieved to know the truth now and anxious to begin treatments. Apparently some people with seizures do have "after sleep" seizures. While this type is easy to diagnose it is more difficult to treat. The preferred treatment would be an Adrenal treatment using steroids. Levi will not start off with this treatment because of possible harsh side effects and his already complex history. Levi will start off with anti-seizure medications and vitamin B6. You can read on the internet the B6 treatment. Its actually very interesting. 

I want to be clear after all of that Levi is not in a lot of pain. For the most part he is a very happy kid. He loves to roll and jump in his jumper and smile and laugh. He really has no idea that he has this many medical issues. That is a huge blessing in my eyes. His reflux is not nearly what it was early this year. He is talking some solid foods with the help of a speech therapist. Levi is a huge inspiration to those of us who are blessed enough to be close to him. Anjie and I have experienced a load of pain through out Levi's short life but we also have experienced enough joy to far out weigh the pain. Believe it or not we see a large amount of good from the struggles. We have learned so much from this about who we are and have been forced to deny our selfish ways to focus on someone else. 

Hopefully I will check back in soon to report some good news on the seizure treatment! Please pray with us...

Levi wasn't happy about all the tests!

Home Safe

Sorry for the delay. We have been trying to get ourselves back to normal after not really sleeping much for two days. Levi's surgery was a success. The two larger cysts were removed that could have been a high risk to swell this winter. Hopefully this is the last time they will have to do that. We will go back sometime next year for a follow up scope and they will keep a close watch until hes preschool age. Levi is pretty tough as we know. He slept all day Friday and then Sat morn he was back to normal. We took this harder than he did I believe because they stuck us in a short stay pod overnight. There was basically no way to sleep more than 30 min at a time. Thanks for the prayers and support. I will try to keep the blog updated with any new developments. We appreciate those that are still following along with his journey.

Trent, Anjie and Levi

Surgery Tomorrow

Just a quick update on what's going on with our family. Levi is scheduled for surgery tomorrow morning. We don't have an exact time yet. It should be in the morning. This will be the surgery I mentioned before to remove cysts and scarring from his airway caused by being on the ventilator for so long. There is also a discussion about going ahead and taking his tonsils while they are in there. Levi isn't of age for that yet but if they are still enlarged we may not have a choice. I can't tell you a lot about the surgery other than it is inpatient and we are hoping he gets to go home this weekend. I will be sure to post a recovery update at some point tomorrow. Please be in prayer for us. For Levi's recovery and for our nerves/rest as we care for him afterwards. 

I promised an update on his reflux issues as well. The new medicine did seem to help. Levis not throwing up as much after his naps. This week has been a little rough but before that he was actually down to about one small throw up a day. The medicine can be slowly increased and we are about at half the max dose right now. There have been no negative affects so we are cautiously optimistic that we will hit a point that will stabilize this issue. There is still the constant watch out for him refluxing. He still has the Sandifer's syndrome where he has spasms from the severe episodes. I am not sure if any of that is going away soon but at least the reduced vomiting is a good step. Please keep praying for this issue.

STILL TRYING

Sorry for taking so long to update on the Chapel Hill visit. I honestly thought I had already done it. The visit was some what successful but not necessarily in finding answers on the reflux. The biopsies all came back normal which of course is a good thing. The only problem with that is with all the tests showing normal is that we really still don't know why Levi has such terrible reflux. He still throws up everyday. Its still a daily struggle to get the calories he needs to stay down. Yesterday He actually had a follow up to see where we were after some minor changes. Basically since nothing has worked its just another chance to try something new. Starting today we are trying a new medication that is supposed to relax his stomach and allow it to stretch more. They claim to have good success with it but all we can do is wait and pray. I will post an update on that in the next week or two if we see some positive results.

The other good/bad that came out of that procedure was that a bronchoscopy done at the same time. Its pretty common to go take a look at an airway while they have a patient sedated for something else. We didnt think anything of it but we ended up getting some not so good results. He has a lot of damage in his airway that was found. Rightfully so after being on the vent for so long. They found a decent amount of scarring and some cysts growing in there. They also found his tonsils are already inflamed and blocking off his airway. Basically dues to all of this Levi is breathing through the equivalent of a straw. So the right thing to do is surgery to open it up some and get those cysts before they grow larger and cause issues.  The surgery is scheduled for October 26th. On that day a decision will be made as to whether his tonsils will also be removed. He is still too young to have them out but they may not feel there is a choice. Although this is not a super invasive surgery its still a big deal on a baby and a much bigger deal when its your baby! Please pray for all of this. We are at peace with it for now but when the time comes it may be a different story.

One more note on his development. He is still not quite there on the pushing up  but he is rolling all over the floor now. Hes getting much more stable on his legs as well. In our reading micro preemies generally take much longer to catch up than just a preemie. We still believe he will get mobile its just on his schedule. 

The Next Step

I know its been a long while but there really hasnt been much to say. His main hurdle as or right now is the reflux still. He is throwing up on a regular basis up to 4-5 times a day. It is still very painful at times and also interrupts his sleep often. We have been able to get more volume in him with the new formula he was put on and he seemed to be growing again. The next step in this journey is to head to Chapel Hill for his first hospitalization since he left the NICU over a year ago. While its a huge praise he made it a year we are obviously not excited to spend any time at all in a hospital. He will have an endoscopy done early Thursday morning (August 30th) and at that time a biopsy of his esophagus will be taken. The purpose it to try and explore to pin down whether a root cause can be singled out for all of his reflux. We know his esophagus will probably be damaged but hopefully the biopsy will give us an exact diagnosis and from there a new treatment plan. Please join us in praying for a speedy recovery and most importantly answers. Please pass this request on to others that you think would pray for Levi.

On a side note I think Anjie and I are slowly growing into our roll as Levi's parents. That may sound crazy but for the longest time we were barely keeping our heads above water. We may have never shown it outwardly or complained much but parents of kids with special needs often try to bear the burden for their children. We have found over time we really just have to give it our 100% and then at the end of the day let it go and start over in the morning. We still struggle a lot with certain things. We struggle with not looking too much into the future. We still have a hard time feeling "normal" around families with "normal" healthy children. We spend a lot of time at home because its not easy to get out. We even struggle making it to church on Sundays these days because Levi's reflux won't allow it. We can't exactly just drop him off at the nursery like most can. There are many more struggles I could list here but you get the idea. It was a hard adjustment to make but I think we are finally finding some sort of contentment in the middle of all this. Its odd but just like we started to feel at home at the hospital this life has become normal to us as well. I guess its all relative right? Its just the season of life we are in I guess. We ask for your prayers for us as well.

I want to also catch you guys up on his development. Things are really very slow moving but Levi is a fighter and he is trying hard to get stronger. He loves rolling on the floor and jumping in his jumperoo. He is just starting to push up some and can briefly support himself on hands and knees. The big fallback is always his left arm. Its still weak and not as coordinated so it gives out on him first. He wants to crawl so bad though and that drives gives us encouragement he will get there one day. Levi is a huge blessing to us even through all of these struggles. He loves to smile and laugh.When he gets really wound up he screams out to let you know it. We have had Doctors in the past tell us none of this may ever happen so we get so much more joy out of the little things because of that. Its interesting how that works huh? The instant reaction is always of anger but in the end those Doctors are just expressing opinion. The only opinion that matters to me is God's. He is the only one who truly knows what Levi's path is. 

Levi is ready for some football!

New Plan of Action

Just a real quick update. Yesterday we had a feeding eval, saw a gastro specialist and met with a nutritionist. The plan that we came out with is to switch formulas to something synthetic that is considered pre-digested. It also doesnt have milk proteins which Levi doesnt seem to digest well. We also are adding a new medicine that will hopefully speed up his digestion which should help add time where he has an empty enough stomach to play more. We also are now getting a referral for a speech therapist to start working specifically on a medically based approach to feeding which will hopefully start getting him back to eating baby food and eventually solids. We are optimistic that this will help but it may take a while to see if that is so. At least its new things to try because clearly what we were doing wasnt working. We also are scheduling a GI study here at New Hanover. We are possibly headed towards an endoscopy which would require sedation on possibly on over night stay in the hospital if these solutions dont help. Surgery was part of the discussion if the things we are trying now dont work we will have to consider it down the road. Thanks for your prayers. I will try and post a report back once we give this time to work itself out.

Trent, Anjie and Levi  

Begging For Help

This is just a quick drop in to let everyone that's still checking in know what is going on. One of the updates I gave last time was about Levi's re-flux. This issue is not resolving itself on its own like the Doctors had hoped. It may have even gotten worse. He is in pain everyday even if he doesn't vomit. Most days he does vomit 2-4 times which as you can imagine is rough on a baby. Every time Levi wakes up from a nap he has a re-flux fit. Its very hard to get him to keep his food down at these times. Many nights when we put him to bed he will wake up a little while later screaming in pain from re-flux. This issue is also stunting his physical development preventing him from being able to do much floor play time at all. When he has food in his stomach he has to sit upright in a chair. I tell you all of this to ask for prayers specifically on this issue. We have a specialist appointment in Chapel Hill on June 27th to talk specifically about this issue and try and find him some relief. So far nothing we have tried helps including medications. We are praying for this to be dealt with using medications but we are now open to surgery if that's and option. At this appointment Levi will have an upper GI study done and then possibly will be scheduled for an endoscopy on a later date. I will be sure to update you next week but like I said...Please Pray!

As always we just keep taking as many pictures as possible of Levi. I don't think when he gets older he will have any trouble piecing together his entire childhood through photos.

Give Us Rest

When the righteous cry for help, the Lord hears, and rescues them from all their troubles. (Psalm 34:17)

I am sorry if people are checking in and I am not getting these up soon enough. Time is just flying by lately. Its interesting to read what I wrote about Levi's progress a month ago and compare it to now. There is some good news to share and definitely  some frustration there as well. I will just go ahead and put it out there so you can continue to pray for our family. We thank you so much for your continued support. Recently Anjie and I really just hit a wall. We are both just spiritually drained. Things seem to be moving so slowly that we have let doubt and frustration creep in. I believe it's only human for this to happen. I believe it was bound to happen eventually. I know many of you would think "How can this be?". "But God has brought Levi so far he will continue to do so." The truth is there is no way someone who hasnt been through a similar situation could understand. Those of you that have children could probably only grasp it this way. When you children are sick you have that parental feeling of compassion and would do anything to see them feel better. We feel that every day of our lives. We want nothing more than to see Levi grow out of all of these issues. We want nothing more than to see him not struggle so much with ordinary everyday task. So picture that and realize how draining that could be to live it day in and day out. Its really finally taken a toll on Anjie and I as well as our marriage. While we realize we shouldnt worry and that its only in God's hands. We also know that God gave us these parental instincts as well so its a natural process to go through. We don't want to complain. We just recently realized that when people ask a lot of times its easier to say OK than to explain our struggles. Please pray that God will give us rest and peace of mind to continue forward. We cannot do it on our own that's for sure. 

As for Levi I will follow up on the previous post with updates:

-Levi is still off of oxygen! Thats a huge praise after over a year we may finally be past that.

-He had two teeth as of the last post. He now has six total! You can only imagine how fussy some of those days were .

-Levi doesnt do well with his glasses but we have noticed and improvement in his sight any way so he seems OK even when he doesnt wear them.

-His Pt is going along still. No real big new developments. He still isnt able to sit on his own for long. We are still working with him to build strength. It may be more of a balance issue though which make sense with a brain injury. He seems to sit up but he falls over to one side when you let go. We do see him trying to lunge forward in his chair which is new and a great sign he is trying hard. He is rolling better and try to push up. Its difficult because of the left side weakness his right arm is trying to do the work. We do notice more strength in the left arm. He also reacts now much more to touch on that side. He actually gets upset and pulls away when you hold his left hand. Thats new and a great sign. Before he showed no reaction to that sort of thing. While on his stomach he does a good job of bringing his knees under him but his arms fail to lift the other end.

-I did mention before a possible CP diagnosis could be coming. After more reading and talking to his PT we believe its too early for that. He does have all of the signs to be diagnosed but since that is only to be diagnosed in the case of permanence. He is slowly still progressing forward so right now its too early to tell if anything could be permanent. It would be much more likely if he had tight muscles. Since he has low tone (weakness) then he is much more likely to over come these issues. Please continue to pray for strengthening on his left side specifically. We have seen positive signs just this week on that.

-OT: Levi  has since started OT. I will try to give a quick summary. He started to help with feeding issues but she will also be working on sensory problems. He is slowly learning to drink from a sippy cup but he cant really balance it well enough to take it himself. His feeding has gotten better. We have started smaller more frequent bottles and use music and nursery rhyme videos to distract him into focusing. He is still having an on and off again with baby food. Currently he is refusing it. His OT isnt concerned and would rather skip over pureed foods. This could just be sensory related also. Sensory issues basically means he processes things different than most people. Sun light irritates him. Crowds make him become introverted. He get distracted easily and doesnt focus on toys for long or eating. His OT diagnosed him with Low Arousal which is a sensory ADD basically. This stuff can be dealt with through therapy and really explains his delays.

-Levis reflux is till very bad. So bad you can hear it coming up into his throat and swallowing it again. Please pray with us this will end soon! He throws up from it almost daily so we are seeing a specialist soon.


Levi got his first haircut a few weeks ago as you will see.

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.