ACTH THERAPY/HAPPY BIRTHDAY LEVI

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.

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.

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!