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