Saturday, July 3, 2010

he wants no covers...

So, it is after 11pm and my parents (yes they are here with us!!!) and I just got back from a huge 4th of July celebration! we were able to sit in box seats and with other families from the unit. Ben was not able to go because it was too late but he had a full evening of watching John Wayne movies...his favorite! wow...this week so far has been very interesting and has had it highs and craziness! Ben has been complaining of pain on the left side of his chest (ever since his feeding tube was pulled) area and every test has been done and every lab drawn! As you know I was told on Sunday am that Ben had a kidney stone on his left and right kidneys. He has been on IV fluids and meds to help pass them. As much as we know he has not passed them but his pain has been getting better. That is a good sign! On Monday he had an ultra sound and it should possible gall stones. This has not been confirmed yet and they are looking into a few other things as well. They also think that he may have formed an ulcer in the inside of where his peg tube was...not uncommen. So, they are still trying to get to the bottom of it and I hope it is soon! I think that Ben had enough of it all on Tuesday! He either just wanted to be left alone or was just darn uncomfortable! They tried to give him his meds and he would just spit them out! He has never done this before! It didn't matter how much we talked to him and tried to convince him that the meds are going to help he would just spit them out! He got his way but then another nurse was able to come in a few hours later and he took them. The rest of the morning he was moody and then after a nap and a decent afternoon he got better....until that night! That night he took all his blankets off, ripped his gown off, was trying to take his bottom sheets off and everything else that was touching him! Of course I told him in order for me to snuggle he had to at least have a sheet on....he kind of agreed when I had him put his arm around me so that he couldn't pull anything off! I usually leave around 9pm but it was not until 10:30 that he finally fell asleep! What a draining evening! The next day Ben was a bit tired in the morning but then he perked up the rest of the day! He has had a few moody times since then but not as bad as this night! As much as this is frustrating and I am trying to keep him clothed and covered it is a good thing because it shows what Ben wants and he has to move to do all of these things! Move all you want Ben! :) Ben has been doing really well in his therapies despite his ups and downs. He has done more standing and kicking ball (see video below), answering questions with his mouth (still no sound but words) instead of head shakes, improving his pool skills and excelling in neoropsychology and memory improvements!! Praise Jesus! There was an OT that was in a conference with Ben's other therapists this week and he flew out to check out Ben and his wheelchair stuff. He worked with Ben for a bit and then when we were on our way out he said to Ben's PT, "that guy is going to make alot of improvements from here on out!" I almost started bawling as I walked away with Ben. This man has never met Ben before this day and I found his comment to be prophetic! It boosted my hope yet again! I have been reading the book of Romans and I came across these verses in my reading. "Oh how great are God's riches and wisdom and knowledge! How impossible it is for us to understand His decisions and His ways! For who can know the Lord's thoughts? Who knows enough to give Him advice? And who has given Him so much that He needs to pay it back? For everything comes from Him and exists by His power and is intended for His glory! All glory to Him forever!" Rom. 11:36 The first few verses talk about the Lords' wisdom and knowlegde...I want this too! As I got to thinking about the rest of it I was truly humbled! I cannot give advice to God, the One who knows all adn there is no way that I have given Jesus so much that He would owe me anything! He has given me so much more and that means I get to worship Him and not the other way around! Ben and I exist because of Him and because we exist we will give Him all our praise and glory! Ben and I were blessed with another lil nephew this week...Kasen Isaac. He was born to my bro and sis-in-law! That makes 13 and one more due this month!

First video is Ben singing the Praise God melody, 2nd in standing frame and asked to kick ball...his first attempt ever, 3rd is his second attempt at it...go Ben go!! This took so much concentration and he worked so hard! He has only a small belt around his waist and support for his arms. He had to put all his weight on one leg, pick up the other and then kick the ball! Sorry they are sideways...turn those laptops around...those with desktops, your head! :)
My parents are with us for a few more days so it might be a few before I can get more updates on!

Blessings to you all!

PS....anybody know where a good place to stay in Santa Barbara or has a time share?? have a wedding there the end of the month and don't know the area!! If you do e-mail


Meg said...

The video of Ben singing Praise God makes me cry. Keep on praising our great God Ben!!
2 Corin 1:3-4
Praise be to the God of all comfort who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God."

Nicole said...

Im praying! Sharing your story with others for more prayers!