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.