Friday, January 30, 2015

Whoa!!! We Skipped a Year!!!!

Where Did 2014 go? I received a not so subtle reminder from my mother that I haven't kept the blog up to date and I need to get something up here. I guess over time I slowly let it slip away. In my mind there just wasn't much positive to report and why would people want to hear the negatives? I am sure that's not how people really feel though and there definitely is plenty of good to report now.

Levi just turned four and he is such a joy. I hope if we can encourage others it would be by living in a way to show people that just because a child may have limitations they can still be loved fully. Levi is constantly smiling, laughing and giggling. He has been in very good health lately and even went on his first diet back in 2014 because he ended up overweight for a little while. He hasn't had any seizures in well over a year at this point and has actually started to sleep through the night. I am not sure if I can express how much more rested Anjie and I are. He likes eating yogurt and pudding as of just recently so we are slowly trying to start getting to where we could wean him off of a bottle.

While Levi is still non-verbal he has over the last year started with some normal sounds such as bababa or dadada. We are still hopeful he will develop some speech soon. He is definitely fully mobile at this point. He is full on crawling now and is in to everything. We have to keep a helmet on his head anytime we aren't right with him because you never know where he might end up. For the most part its just between his tent which has toys in it and his toy box. The best part is just his awareness and vision compared to early last year. He can definitely see much further than we thought. He sees toys across the room and goes after them. This is not what we expected without wearing his glasses after all of those surgeries. He also knows his way around the house and can find his toy box whenever he pleases and chooses his own toy.

I am not sure if we can accurately convey on here what a huge difference we have seen since his seizures came under control. Another HUGE development has been starting school last fall. We moved into Topsail school district and Levi now attends the EC preschool class at South Topsail. After a lot of anxiety we decided it was best for his development and we released him to go part time. Its hard to trust others and let go after all we have been through with him. We are so grateful though because he has some amazing teachers and gets to interact with other special needs kids. It has been nothing but a positive experience so far.

I apologize for the long delay but hopefully this gets us caught back up to a certain extent. I know some people are finding this blog through online searches or NICU nurses at New Hanover and Anjie and I just want to encourage you. If you are in a similar situation just know that the storm will pass at some point. When the storm does pass you will find a new normal and you will love your child just as much as you would have if they were born "normally". There is a pot of gold out there and its all worth enduring these challenges. Please feel free to reach out if you need us at all.

Trent, Anjie and Levi

Monday, December 30, 2013

End of Year Update!

I have recently heard some rumblings that people still check this blog for updates on Levi. I apologize for not keeping it going. It became at times more of a chore than a pleasure mainly because I feel like there wasn't very much good to report. Levi has made a ton of medical progress since my last post. I am not sure its possible to hit on everything without boring you all to death but I will do what I can. 

Levi has only really had one sick visit to the hospital since March and that was due to his seizure activities and some changes that happened there. We talked multiple times about his Infantile Spasms and the negative developmental impacts caused by them. The great news is that he finally grew out of them! They were very resistant to medication so we had no choice but to sort of wait it out. That happened I believe a few months back. The bad news is Levi started about two weeks after that having seizures. It was sort of devastating to say the least. We knew that it was a possibility for it to morph into a new form of epilepsy and he was shortly diagnosed with a type of seizure called myoclonic jerks. These are also sleep related like his spasms were. He went from spasms after sleep to the clusters of jerks before sleep. We tried to catch them on an EEG in the hospital but of course Levi didnt cooperate. The doctors still feel comfortable diagnosing them from video clips we have. So he started a different medication for them and slowly ramped it up until we believe we have gotten some sort of control over it. He went from having an episode every 2-3 nights and some day times ones to now none in the past three weeks! So yeah thats crazy to say but for the past 3 weeks hes been seizure and spasm free for the first time in almost two years! Its hard to not be on the alert at all times and I doubt our battle is over but its encouraging that medication is finally working to control them.

So I guess the seizure activity was the big battle of last year. Levi has had plenty of battles but a lot of them are resolving slowly. The re flux has gotten much better. He sometimes goes days without throwing up and as he gets stronger that should resolve. We always have to watch his exposure to germs and probably are more reclusive than most people our age because of it but thankfully he doesnt often get more than a light cold. His lungs seem to be in good condition and his airway has given him no problems since the cyst removal. I believe his tonsils will come out at some point but we are waiting as long as the doctors say its OK.

As far as development Levi is what you would call Globally delayed. This means in every aspect his is behind for his age. Its still too early to know for sure his long term outlook but he will likely start in on some special preschooling with the school system in the next year or so. Physically we have recently started to see real progress with his core strength. He is just now starting to push up with his arms and rock back and forth some. His left arm as usual is the weak link but he is adapting to that. He can now sit on his own for as long as he likes but usually after a short time he likes to plop back down and work on his rolling. His legs are very weak still. He started with braces and a walker just standing some but he out grew his braces so we are waiting on the new ones. He doesnt like to put much weigh on his legs and when he does its usually jumping in the jumper. Vision wise I think hes doing better than expected. His world of awareness seems to have increased. Some times now he leans forward to grab for stuff when you least expect it. The eye doctor was impressed with his last check up but its still difficult to get hims to wear his glasses. Levi has started to vocalize a little more. He still doesnt say words but at home when its quiet he will let lose with a lot of different sounds at times. He is getting communication therapy during the week and has shown some real progress there. He is starting to be able to identify certain objects when asked by grabbing them. He also works on hitting a button during the reading of a book when he wants to turn the page. This is all very positive! Sorry to ramble but I wanted to catch everyone up if thats possible. As you can tell there's some good and bad in there. He is not close to where a three year old should be obviously but I think thats to be expected.

Finally just a snap shot into our lives as his parents. Raising children is I believe one of the most challenging and rewarding journeys for any person. We go through highs and lows almost every day. One day you might catch us just beaming with excitement over Levi and the next day we might just break down and cry if you ask us how we are. All and all its all worth it though. We still pray for miracles for Levi but we also try and stay grounded enough to realize its not our plan or our timing. God is in control. Being a parent of a special needs kid is very difficult at times and we still need your prayers and support as much as we did on day one of this journey. 

Thanks Trent, Anjie and Levi

Saturday, March 9, 2013

Great Progress

Sorry to not keep this updated. It's much easier to get updates on facebook. Just a quick summary. Levi is still in the PICU. He was moved her on Wed night. Thurs morning things were getting serious enough that we were told the ventilator was the next step. We have since realized that this whole episode is likely caused by a new medication  he was on. We have since stopped that medication and have seen remarked improvement in his condition. That along with steroids and anti-biotics and he is headed back in the right direction. He is being weaned from his oxygen and is tolerating very well. The next step is getting his feeds back up to a level he can go home on. He went on a hunger strike due to feeling bad so this may prove to be a hurdle. Please pray for continued progression.

Wednesday, March 6, 2013

Crazy Cold

Some of you may know already Levi Landed in the hospital this week. Its nothing short of a miracle that this is his first sick visit to a hospital since his NICU journey ended. A kid with his medical history should be making frequent trips for this sort of thing so we thank God for His protection over the past two years.

Basically Levi caught a common cold as far as we can tell. His chest X-ray was negative as well as the RSV swab. We are fairly certain that this ACTH treatment he was on wiped his immune system to the point he just can't fight this cold. We made two trips to the doctor on Sunday and then Tuesday and the was a progressive worsening to the point yesterday it was time to go. Levi's airway was already compromised so the irritation caused by the cold has all but shut it off now. Immediately upon arrival the good breathing treatments and steroids got going and we saw an immediate impact. Levi was feeling much better last night and this morning and even took a couple bottles. It looks like he could be stuck in there a little longer though. His body is pretty much wiped out so he is trying to sleep a lot to catch up and not eating enough to sustain himself. He has IV fluids until he gets back to it though. This afternoon Levi hit a rough patch again and had a freak out session crying until he eventually fell asleep. It looks like he's not quite out of the woods so please pray for him if you will.

While I am here I will give a quick update on the infantile spasms. The last post I made talked about the treatment he was starting called ACTH. Levi has since completed that treatment and it was not fully successful. Although the spasms were greatly reduced they were not gone which is the necessity when treating this. So he was weaned off and is now on a drug called Sabril. Sabril is more of an anti-convulsant I believe but is the other drug considered to be top notch in IS. The downfall is this drug has possible lasting vision side effects. We are praying that Levi doesn't get any of this damage as his eyes are already not 100% due to the ROP as a preemie. We are trusting God in this and praying for a resolution of the spasms for his brain to normalize and his development to continue. 

Monday, January 21, 2013


Today is Levi's birthday. He turns two today. We are so grateful for the blessing of the gift he is to us. Levi is the toughest most inspirational person I have ever met. Many of us draw inspiration from different people overcoming all kinds of obstacles. Anjie and I are so blessed that in our lives that person lives in our house. He makes us smile every single day with his infectious happiness. He has fought so hard for his own life that many everyday struggles no longer seem relevant to us. Please join us in giving all of the credit to his life and story to God Himself. He is the giver and sustain-er of everyone of our lives. We may never understand why Levi had to bear this burden but what we do know is God has a plan for him. We are so anxious to find out the whole revelation of that one day. Just think in some states we could have made the choice to abort Levi at his gestation instead of allowing him his right to prove himself. Its sad our nation thinks that is OK but I guess that's a whole side issue for another time.

On a sadder note Levi is right in the middle of another fight. As I have written already this condition of infantile spasms is very bad. This is a giant our family is currently facing. We are hopeful still to get them stopped. We believe if so we are giving Levi a good chance to speed back up his development. We made the choice to go aggressive with the treatment at this time. The choice we made is to immediately start Levi on ACTH therapy. You can read about it here Basics of ACTH therapy 
 Basically its a high dose steroid treatment that when effective has been shown to wipe out the spasms. The treatment does come with a high cost. The side effects can be very taxing. It also causes immune suppression which means we won't be taking Levi anywhere for the duration of the treatment.  The doctor said we could take him out but not around sick people, We realize this time of year that is virtually impossible so we are choosing to be conservative. We expect this treatment will last about 4-6 weeks beginning tomorrow. Anjie will give Levi a shot each day. As usual we ask for your prayers. We are praying specifically that the spasms will stop and the side effects will be minimal. Please pray for Anjie and I to have patience and strength throughout this. I will try to keep the blog up to date as we move forward. 

Levi is getting stronger in his sitting. Check him out in his Cam Newton jersey.

Monday, January 14, 2013

No Luck Yet

I really wish I had good news to report. We have tried to remain hopeful during this whole process. We just can't seem to make a ton of progress on Levi's more major issues. The Doctors remain hopeful that he will just grow out of it all. That is not what you want to hear as a parent. You go to specialist looking for solutions. The truth is these are complicated issues Levi has. 

The reflux remains about the same. His last GI visit they decided to increase his medications again. I don't know if we see an improvement. A really good day is Levi not throwing up at all. The worst days now don't seem as bad though so maybe he is making some progress. 

The seizure treatment started about 6 weeks ago now. I don't believe we have seen any large improvement. His medication for this was recently also increased with no luck so far. Levi has woken up the past week straight in the middle of the night having an episode. After wards he just wants to play and it is very exhausting  for us. He still has an episode every morning and after every nap. So here is the new plan of action. We increased his current med and in about one week we will add another med on top of that. We will try that for two weeks. If at that time there is no improvement then we have no choice but to try steroid treatments. This is not the route we wanted to go. These treatments should be very effective but they also come with major side effects. With Levi's history the last thing he needs is more medical problems. The good news is these treatments have proven very effective. The negative is that if the seizures do return after two rounds then we have to stop and we are out of options. This is starting to feel like a hopeless situation. It is not easy to swallow that your child may end up just having to live with this type of condition.

I really hate to give this type of bad report. Believe me there is plenty in Levi's life to be thankful for. The reason I wrote this the way I did is to try and be very transparent about the situation. We are asking for you guys to join us in prayer over the next three weeks as we try this newest treatment. Our prayer is to see Levi respond well and not need steroid treatments. We are praying that the seizures will stop or minimize to a manageable level. 

Levi in the ball pit.

Our friend summer took these for Christmas.

Friday, December 14, 2012

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!