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