Tuesday, March 26, 2013

Renewing of your soul....

I have decided we might need an intervention for Jeremy, yes it's true.  Jeremy has became a trash diver and I'm not kidding.  His HTS brought over some Arby's and gave him some fries, he ate most of them but when we got ready for bed they had sit out so I threw them in the trash.  The next morning we come into the kitchen, he dug the arby's sack out of the trash.  The other morning getting ready for church, I threw a couple of old makeup containers away and when I turned around he was rushing to the trash to get them out.  He continues to become more verbal, but I'm not sure what the trash thing is about but he does provide me with entertainment.   He was in his closet the other day and discovered I still had all his baby blankets, and that he must look at them, then the decision was made that his little fellas needed the blankets.  I was able to negotiate putting back the ones that were hand crocheted for him.

We have been enjoying our spring, although we had some cold weather and snow flakes on Sunday it was such a glorious day.  My flowers are starting to bloom and the grass is starting to get green and grow.  "Be ye transformed by the renewing of your mind, that ye may prove what is that good, and acceptable, and perfect, will of God."  Romans 12:2.  We have been doing some renewal of our souls, personally, spiritually and emotionally.  I purchased me the John McArthur study bible so I can really start studying the word of God not just read it, but study.

I have been on the Zeal wellness since September, it's 120 vitamins and minerals that I otherwise would not get, I feel great, energy, eating healthy and exercising.  I put Jeremy on it a few weeks ago because he otherwise wouldn't get this in his system, he already eats pretty healthy but as you know he deals with urinary tract infections.  It has just been a demon that we have fought and he's been off and on antibiotics for the past 2 years and I hate that.  I have researched, tried everything I can think of but nothing has slowed them down.  I put a 1/2 scoop of  the Zeal wellness in his applesauce in the morning with his vitamin.  He did the week before ran a fever and had chills but broke that with 1 dose of Tylenol and it hasn't returned.  He's had cloudy urine a few times but it cleared up.  Jeremy has been sleeping so amazing well which is good for the renewal of his body.  He started last week decided that he would stand up by the couch and stand there as long as he could.

Last night as we got ready to go to bed, this is what HAD to be on the bed with him.  It cracked me up, I did negotiate that the tub of babies was NOT going onto bed.

Friday, March 15, 2013

Spring is approaching....

I always love the time of year that we spring forward with time, so I was super excited that last Saturday, we sprang forward so we are having daylight longer.  Our Oklahoma weather has been awesome, it's warming up and spring is in the air, which technically, Wednesday, March 20 is the 1st day.....

My mom and I took a trip to Columbia, Missouri last weekend, it was nice to get away and fun to have a trip with just mom and I.  I wanted to go to support Pascale's Pals, they are the organization when Jeremy was in the University of Missouri Children's Hospital, brought him a basket with a colored Nook that we used so much when he was in the hospital, she also sends Jeremy a Christmas gift.  I like to give back to what was given to us, plus it helps support and make sure their efforts continue for other children.

Jeremy is on spring break next week, so excited for his break.

I had a resource fair last night out of town so when I got home, Jeremy was a lump on the couch fast asleep.  He continues to talk up a storm, you can start to understand more and more of what he is saying plus he continues to build them leg muscles.  The nurse took him out yesterday evening and she told me that he used the ramp at the church from our house and walked all the way up and back down then said, "you did it".  She ordered pizza for them and said he ate 3 1/2 pieces and told her "thank you".  I've not heard that word yet.  I continue to hear, "I wan tat", "I sed tat", "wha up wi tat".  His voice is so adorable....

Wednesday evening we were sitting outside and I caught this picture of the monkey as he pulled up to stand....


Friday, March 1, 2013

Winter days in the Life of J....

We have had some snow lately, or actually the Weather channel used the term, "Thunder snow".  We get heavy snow, then rain, then either hail or sleet, then lightning and thunder then its cold for a few days.  The snow doesn't stick around, but that has been our pattern for the last two weeks.  

We went to see Dr. Marouk, Neurosurgeon for our yearly follow-up and to get the results of our MRI we did on February 14.  I had wondered with an episode a few months back if his shunt wasn't working correctly and sure enough the MRI showed Jeremy's ventricles were a tad larger than last year MRI, but not enough to rush off for surgery.  Jeremy is still progressing physically, emotionally and cognitively.  We will be watching J, see Dr. Marouk in 6 months with a CT scan.

This past weekend, there was a time J got really agitated with me, rubbing his eyes really hard like he got something in there, but wouldn't let us look in his eyes, pointing to his head saying, "fix it".  I was ready to call Marouk.  He was showing signs of getting a UTI earlier in the week so I took a sample in on Friday.  Jeremy cratered fast.  Our Super-Awesome Pediatrician, Dr. Cyrus always comes through for Jeremy, got the results called in an antibiotic and he started them Sunday.  Jeremy did stay home for 3 days but was improving daily.  The good news is the UTI are getting farther apart, which is what we want to the point they don't exist.

Jeremy got another round of botox injections on Wednesday in both legs.  I'm gearing up for another round of great improvements in him.  I told him to tell Dr. Miller and Heather by, he just folds up his little arms puts them in his lap, sticks out his tongue and is silent.

He is getting brave, sometimes he looks at me like just darn me to let go, I tell him, "go right ahead".  He does this side kick that is hard not to laugh at because it's so cute, he will be standing there, stick out his tongue and start kicking his leg sideways or backwards.  He continues to be verbal and responding to commands, "help me dress you" he will put up his legs, or hold out his arms.  This is a boy who knows what he wants.  His nurse brought him a hamburger one night, he finally ate the meat so I wadded up the bun in the package and thew it away, the next morning after my shower I come into the kitchen to find him sitting at the table with that wadded up hamburger bun on the table.  I negotiated that for some corn tortillas.  Then this morning he knew the nurse had her chips on top of the ice-box so I come to the kitchen and he's trying to get something off the ice box, which I knew what it was I told him the chips on on the table.   He insisted they go to school with him.

Here are a few pictures of the ornery little boy.
He wrote on his face with a dry erase marker

He insisted he wear his glasses to bed (he was asleep)

He got in one of his tickle me Jeremy modes