Saturday, January 28, 2012

I need out....

One year ago today was honestly the worse day of my life, a spine surgery that was hopeful to go right went totally wrong and a look in a surgeon's eyes didn't prepare me for the words that would cut my soul. A day that was going to change my life dramatically for the worse.  GOD has used for good, turned it all around, taught me that trials are blessings in disguise and once again showed me a caring compassionate surgeon whose best interest is J, along with a hospital, town who supported us.  Jeremy's has healed and made a remarkable recovery, although still not where he was but there was also healing of my heart to come to an acceptance.  I will forever be grateful for our super-hero, Dr. Dan, Holly, MU Children's hospital staff, Kelsey, Kaitlyn, Corrine, Lauren, Amber, all the nurses, Pacale's Pals, Aleatha, Jackie, Julia, Heidi and the Town of Columbia.  I wasn't sure where we would be this time last year, but I LOVE where we are at, my attitude and only by the Grace of GOD am I here and have the acceptance.....

We went back to see our home away from home, we had a great trip, Jeremy traveled very well, was very happy, content, talking up a storm and even took a nap on the way there and the way home.  We seen Mike and got measured for a new TSLO brace, went to the hospital to visit all of our friends, we even ran into Dr. Dan and visited with him, Jeremy was the master of attention in the PICU, with Elizabeth and Steph and was having a blast.  Dr. Dan got to see J playing, being happy in someplace that wasn't an office visit.  J was just very verbal and just had lot to stay about everything.  We did X-rays and Dr. Dan feels that the upper spine is more than likely fused itself, the lumbar curvature looks to have progressed a bit but that could be the way he was sitting.  This also doesn't mean that it won't progress or that we won't be discussing spinal fusion and the risk that will go with it.  We got our story recorded for the upcoming radio-thon picked up our brace and headed home.    The plan is Dr. Dan will check him again in 6 months, he wants to see how J does have the botox injections the middle of February.  

Mr. funny boy everytime we would stop would try to unbuckle his seat belt and say, "I need out", it was so cute and cracked me up.   

J with Mike... We love him

Elizabeth brave letting J have her Iphone

J with Elizabeth and Steph

J with Steph

Mr. big radio man

Friday, January 20, 2012

I said...........

                We have transitioned back to “normal” life after the holidays in Jeremy world.  Jeremy is in school, I’m back at work and we have got our groove going. 
                Jeremy has became a little pig, eating good, trying new food items and staying healthy.  We have a regime that is working for him right now and his last UTI was Christmas Eve.  I added a cranberry tablet with a probiotic and no pop allowed.  If he starts to act like he isn’t feeling well, no energy, not eating we leave some of the gentyamacian solution in overnight.  He has also became good at carrying on a conversation in an expressive manner, not sure where he got that.  
                We are truly enjoying this awesome fall/spring weather because Jeremy gets to play outside and loves it.  I came home from work Monday and he was out in the carport with the nurse rolling the ball, having a blast so we sit out there before coming in to cook dinner and he didn’t want to come in.     
                We are going to our home away from home, Columbia, Missouri next week.  We leave Wednesday morning, January 25 to see Mike Jackson that afternoon to get measured for a new TSLO brace and if there is enough time we will go visit our friends at the Children’s Hospital.  The next morning we go see our Super-hero, Dr. Dan in clinic at 8am and Mike will bring the new brace to fit Jeremy for it.  I am not expecting much from the visit in way of future plans unless the scoliosis has progressed which that chance always exist.  We then have an appointment at 10:30 at the Zimmer Radio Group to do a pre-recorded montage for their upcoming radio-thon, where I will share Jeremy’s story and what the University of Missouri Children’s Hospital has meant to us.  They have all been so awesome through the journey and I’ve wanted to do this for the past few years but it just never worked out.  I would love to be there for the radio-thon but it’s March 1 and 2.  I am planning on returning March 9 for the Pascale’s Pals auction and really want to support their efforts.  They supported us while we were there, brought Jeremy his colored Nook, his DVD player, DVD’s and a signed hat by Nascar driver Carl Edwards.   
                Jeremy started his new job this week as an office aide in the Middle School, his teacher said he really likes going down there and everyone just loves him.  I know he has been in an awesome, great mood.  This week Jeremy has been very verbal, has had a lot to share.  I have a video of him sitting on the cabinet I will download this weekend, it's funny several times you hear Jeremy say, "I said"