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!
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