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Friday, November 26, 2010

Our OU Students....

Last week was the last visit with our OU-for our Family Practicum Intervention Plan.  Jeremy got 3 girls this year, Nicole, Maryella and Emily so he had so much fun with them.  They got involved with us when we first came home from Jeremy's 1st spinal surgery and Jeremy was working to re-gain motor skills.  They got an initial visit with us, and then was able to observe our SLP at the house one day, they never got the opportunity to observe Jeremy at school or outside the home.   One of the concerns I have with Jeremy is him being able to interact with his typical peers, I want him to build up friendships with his peers.  This is a life skill that everyone needs, his peer of today are going to be his future employer, business owners and he needs to be social.  The part of this program is for them to observe Jeremy at home, gather information, research which is always a challenge with FG syndrome but they always come up with new information I've not seen, then come up with a plan.  They came up with Jeremy join a local boy scout troop, I had actually thought of that in the past so this was a good idea.  

Here are some pictures, mostly Jeremy playing ball with the girls, getting them to chase the ball and throw it around.  Jeremy was so tired when they left, he was ready for bed. 



 

Saturday, November 20, 2010

I'm thinking....

The other morning, while we were getting dressed I asked Jeremy if he was ready to get dressed and it sounded just like he said, "I'm thinking"... he cracks me up

Thursday, November 18, 2010

Jeremy growing up

Jeremy has started waving at people and it is beyond the cutest thing in the world to see this.  We will be out somewhere and occasionally he will meet someone and he will stop and wave, as if to say, "do you see me waving at you"  He is just growing up in so many ways.

Last Friday Jeremy was scheduled to get a cavity fixed so that requires us doing dental rehab at the hospital.  We check in at admissions and go up to Pediatric surgery/waiting.  While we were walking out I noticed Jeremy's Pediatrician walking up the stairs, I told Jeremy, "there is Dr. Cyrus" I was going to say something to him but J took care of that and started squealing and Dr. Cyrus, stopped and said, I know who that is.  We visited for a bit but Jeremy was not quit sure he liked seeing Dr. Cyrus at the hospital.  Jeremy played in the waiting room, interacted with another little boy and did well.  When it was time to go back the tech got him ready, the nurse came in and there was Dr. Winder.  It was awesome it happened so quick.  I tried to give Jeremy the verstat but in the process it squirted everywhere so he got very little in his mouth.  The nurse put up the edges of the bed, Jeremy slung his arm over the edge of the bed, "Like mom, hold my hand" and I did until he turned the corner and told him, you are such a big boy, you go with the nurse and she is going to take good care of you.  I watched her wheel him down the hall and he was looking at the scenes.  I went to the waiting room and got a special treat, got to visit with one of the mom's I've been supporting, they were also having surgery.  I visited until they took her back, then went down to get my cup of coffee and a muffin.  They came and got me at 9:30 to speak to Dr. Winder and by 11:30 we were on our way home. 

Jeremy was sleeping so soundly, got a video of him doing his cute little snore....

video


Jeremy was very verbal and in a great mood.  I stopped at Arby's to grab him a bite to eat, got him some waffle fries, probably not the best choice of foods since they were fried, but he literally ate every last one of them and only offered me 2.  

Monday evening, I went to Taco May to get us a taco salad, the lady at the drive-thru window was Jeremy's bus driver when he was in pre-school and she always makes over Jeremy.  I rolled down his window so he could see and when I turned around as we were pulling away, he was waving at her.

Tuesday, November 9, 2010

Where we were last year.....

Wow, I can't believe this time last year, we were on our way to St. Louis to meet THE surgeon who was going to fix Jeremy's spine.  I knew this because after a disappointing visit to Shriner's, visit with a local surgeons, Dallas-Scottish Rite not returning phone calls this was literally my LAST option.  I admit thrilled was not on my mind for the 8 hour drive, 400 miles one way.  The reason for the trip was just heart wrenching to me as a mom, the spine is scary and the fact I was playing a part in making decisions on my son's spine was scary.  I always hoped the TSLO brace would slow down the progression and eventually the spine would start to grow correctly, but that August appointment with Anagnost them thoughts were quickly dismissed.  I had belief that GOD had a physician/facility in place, I've always asked and GOD has always been faithful to send us awesome, Christian doctors who truly have Jeremy's best interest in mind.  I know GOD'S plans are not always my plans so I went through the motions waiting for the day that GOD would heal Jeremy's spine.  I didn't like the surgeon from St. Louis right from the start, he walked through the door with I am holier than though attitude, which I can live with but he treated Jeremy as less than a person, and was degrading to me as a mom.  When he looked at me and said, "you need to let grandma tend to HIM and pay attention to what I'm saying", he was literally the third physician in the long line we have seen that I wanted to do bodily harm to.  I think had there been another option on the table I would have walked out that door and not even looked back.  I know that I can't burn my bridges.  I remember all the way home secretly pouring my heart out to GOD, it this the one? was it hurt pride? should I turn the other cheek? he is qualified to tend to Jeremy's problem. I dealt with a great sense of hopelessness and this sent me deeper into a minor depression.  My son had needs and this was the last option, but didn't feel right.  I couldn't mail him Jeremy's X-rays, I struggled with that.  When I was in the search mode, Columbia, MO wasn't even on my mind.  Here we are 1 surgery down and the 2nd one scheduled.  THANK YOU GOD FOR ANSWERED PRAYERS, AND that we aren't traveling back to St. Louis for J's spine surgeries.....

Wednesday, November 3, 2010

Awesome "Fall" week

It has been an AWESOME fall week here in Okie land, the weather has been beyond words perfect.  I am so loving it.  It's been a little chilly in the mornings but not to bad and the days are super nice.   We started our week off bright and early on Monday with an 8:15am Pre-op appointment for Jeremy's upcoming dental surgery on November 12.  It's pretty bad when the security guard knows when I walk through the door with Jeremy we are there for him, if I walk in by myself there must be a meeting.  He tells me don't even bother you know where you are going.  We got checked in on level A, then down to level AA to the Day clinic for blood draw for Dr. Kayser.  I was so proud of Jeremy he sit there like a big boy and let them take blood, even when she couldn't get it in the first arm.  Then up to level 1 to see the nurse and anesthesia, Jeremy again being a perfect little boy.  The nurse asked me, "will this require an overnight visit" and I said, "NO" in a are you totally insane voice, course I'm having major anxiety of thoughts of being admitted.  I said, "wait, this is Jeremy, have you met Jeremy? he doesn't always do things as expected, so let us say it's not planned for an overnight visit"   When we got ready to leave Jeremy cracked me up, he had to make sure the light was on and the door was shut.  The nurse thanked him for being so helpful.  He also collects magazines and was trying to grab up as many as possible, I finally convinced him to leave them for others.  We went up to level 5 which is our NICU and was going to visit Tina Smith, who was our lactation nurse when Jeremy was in there 11 years ago and was so helpful, but she was out sick.  Then on Tuesday, we had a visit with Dr. Cyrus, we have to see him before dental surgery.  It was a good visit and Jeremy was so tired he fell asleep on the way home. 

The rest of the week is cruise time, nothing planned until next Friday when Jeremy has dental surgery.   I will be off the entire day with him. 

We will have to make another trip to Columbia, MO before our admission.  We are going on Thursday, December 30 to see Dr. Dan in clinic at 9:15am and anesthesia at 10:15am.  I am off that week for Christmas break so I am planning a leisure drive up on Wednesday and more than likely leisure drive home on Thursday.  The other plans remain the same, admission on January 18 for Dr. Dan to put Jeremy back in halo traction and posterior spinal fusion on January 28, 2011.