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Thursday, March 10, 2011

Hope thou in GOD...

We switched things around and Jeremy started his outside PT on Monday, I think this will be in his best interest since he has school PT on Tuesday and Thursday. J’s tone is better and he makes progress each week. He was using his knees to do some crawling motions, stood in a toy train with assistance to play and of course was in heaven when he was rewarded to play in the ball pit. We all know how he loves to throw balls, he was laughing so hard as he threw them out and I made a big deal about chasing them down. His center balance improves daily. We will get a gait trainer either Friday or Monday for the house, this will provide him with support as he builds muscles and strength plus give him a way to get around the house. Monday evening I put him in the center of the living room floor and said, “Jeremy you have to learn to get around.” I left the room and came back to my son setting up against the wall smiling. He works so hard. I had a transition fair on Tuesday so it was late when I got to pick him up, they told me that he had fallen asleep. He had a 9:30am appointment with Dr. Cyrus on Wednesday so I let him sleep in, so I’m not sure if he was exhausted or the schedule change threw him off, but he had an “OFF” day. Dr. Cyrus said he looks good, we are leaving his ADHD meds where they are at, he was happy he gained a little weight, his incision looked good, no issues with me cathing him and PT notes show progress. Dr. Cyrus put in orders for Jeremy to get some nursing, so last night the agency came to do their assessment, they send that to the Oklahoma Health Care Authority. This will help me out because I currently am doing this on my own, I’m the only one who can cath him plus the constant lifting him up and down and most days I start my day exhausted.


We go back to see Dr. Dan on Thursday, March 17 at 1:40pm for J’s 6 week post-op appointment. I’m sure there will be discussion on future placement of rods and a possible better idea of what he is thinking of when it will need to be done. I can say however it is not with as much excitement as when we went back in September when Jeremy had fully recovered. I know Dr. Dan wants to see more leg recovery before proceeding with the rods. I admit in Jeremy World, there have been GOOD days, MEDIUM days and LOW days that I struggle. I am thrilled, thankful and excited with each step of progress J has made, but then again I am so dishearten and desire more than anything for my son to walk and have back his mobility. I miss J buzzing around the house and doing the things that J does. I want him to be able to play outside on his jungle gym or just play around the yard.

“Why are thou cast down, O my soul? And why art thou disquieted within me? Hope thou in GOD.” Psalm 42:11. I do have my faith, hope, and trust placed in God and am working hard to be patient and wait.

I am super-de-duper excited that on Sunday we spring forward and will have daylight longer. I am taking off Thursday and Friday of J’s spring break. I am excited that after our visit with Dr. Dan we are going up to the hospital so we can see all the wonderful people who took such great care of him and me while we were there for 31 days. It will be interesting to see J’s reaction when we get there.

I am trying to convince my sister to take the trip with us so I’m tempting her with a few days in Branson and shopping. I must admit a road trip staying in motels with indoor-heated swimming pools/whirlpools, a break from reality sounds fun to me. I’m not a big shopper and the mood must hit me, but after going through my closet to find out that I really didn’t have much in my closet but jeans and casual and cleaning out J’s closet the mood has hit. I’ve been asked to speak at a United Way function about the respite care J gets through Show and I’m helping with the CMN sponsor luncheon and need some dress clothes to wear to those events.

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