Friday, May 4, 2012

Give Us Rest

When the righteous cry for help, the Lord hears, and rescues them from all their troubles. (Psalm 34:17)

I am sorry if people are checking in and I am not getting these up soon enough. Time is just flying by lately. Its interesting to read what I wrote about Levi's progress a month ago and compare it to now. There is some good news to share and definitely  some frustration there as well. I will just go ahead and put it out there so you can continue to pray for our family. We thank you so much for your continued support. Recently Anjie and I really just hit a wall. We are both just spiritually drained. Things seem to be moving so slowly that we have let doubt and frustration creep in. I believe it's only human for this to happen. I believe it was bound to happen eventually. I know many of you would think "How can this be?". "But God has brought Levi so far he will continue to do so." The truth is there is no way someone who hasnt been through a similar situation could understand. Those of you that have children could probably only grasp it this way. When you children are sick you have that parental feeling of compassion and would do anything to see them feel better. We feel that every day of our lives. We want nothing more than to see Levi grow out of all of these issues. We want nothing more than to see him not struggle so much with ordinary everyday task. So picture that and realize how draining that could be to live it day in and day out. Its really finally taken a toll on Anjie and I as well as our marriage. While we realize we shouldnt worry and that its only in God's hands. We also know that God gave us these parental instincts as well so its a natural process to go through. We don't want to complain. We just recently realized that when people ask a lot of times its easier to say OK than to explain our struggles. Please pray that God will give us rest and peace of mind to continue forward. We cannot do it on our own that's for sure. 

As for Levi I will follow up on the previous post with updates:

-Levi is still off of oxygen! Thats a huge praise after over a year we may finally be past that.

-He had two teeth as of the last post. He now has six total! You can only imagine how fussy some of those days were .

-Levi doesnt do well with his glasses but we have noticed and improvement in his sight any way so he seems OK even when he doesnt wear them.

-His Pt is going along still. No real big new developments. He still isnt able to sit on his own for long. We are still working with him to build strength. It may be more of a balance issue though which make sense with a brain injury. He seems to sit up but he falls over to one side when you let go. We do see him trying to lunge forward in his chair which is new and a great sign he is trying hard. He is rolling better and try to push up. Its difficult because of the left side weakness his right arm is trying to do the work. We do notice more strength in the left arm. He also reacts now much more to touch on that side. He actually gets upset and pulls away when you hold his left hand. Thats new and a great sign. Before he showed no reaction to that sort of thing. While on his stomach he does a good job of bringing his knees under him but his arms fail to lift the other end.

-I did mention before a possible CP diagnosis could be coming. After more reading and talking to his PT we believe its too early for that. He does have all of the signs to be diagnosed but since that is only to be diagnosed in the case of permanence. He is slowly still progressing forward so right now its too early to tell if anything could be permanent. It would be much more likely if he had tight muscles. Since he has low tone (weakness) then he is much more likely to over come these issues. Please continue to pray for strengthening on his left side specifically. We have seen positive signs just this week on that.

-OT: Levi  has since started OT. I will try to give a quick summary. He started to help with feeding issues but she will also be working on sensory problems. He is slowly learning to drink from a sippy cup but he cant really balance it well enough to take it himself. His feeding has gotten better. We have started smaller more frequent bottles and use music and nursery rhyme videos to distract him into focusing. He is still having an on and off again with baby food. Currently he is refusing it. His OT isnt concerned and would rather skip over pureed foods. This could just be sensory related also. Sensory issues basically means he processes things different than most people. Sun light irritates him. Crowds make him become introverted. He get distracted easily and doesnt focus on toys for long or eating. His OT diagnosed him with Low Arousal which is a sensory ADD basically. This stuff can be dealt with through therapy and really explains his delays.

-Levis reflux is till very bad. So bad you can hear it coming up into his throat and swallowing it again. Please pray with us this will end soon! He throws up from it almost daily so we are seeing a specialist soon.


Levi got his first haircut a few weeks ago as you will see.