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!
