Saturday, October 30, 2010

What a fun week.....

OH, we have had such a fun week with all the festivities.  Here is a re-cap of Jeremy's fun week. 

Monday, Jeremy was so tired from the corn maize trip that he fell asleep on the playground.   It was adorable and I couldn't believe he was that tired.   


Tuesday was show your school pride, wear your favorite jersey or school shirt.  Jeremy wore his Jefferson-Heights Panther shirt to show his school pride.   

Wednesday was wear red day, Jeremy wore his OG&E 2010 Sapulpa Expo team shirt.  I didn't get a picture this day.    

Thursday was, wild hair/sunglasses day.  I sprayed Jeremy's hair blue &green, put on his "Going Bonkers" t-shirt which was tie-dyed.  His head matched his shirt.  He wore his batman sunglasses.  He was having fun and looked so cute.  There are a couple of pictures of Jeremy with Misty, his favorite Para and the HTS over the summer.   

Friday they bring their costumes and put them on after lunch for their class parties.  Jeremy was a TMNT (teenage mutant ninja turtle) I called him JeremyRay-O, the NEW TMNT.  

Jeremy is having a party at respite today, with pizza and we provided the cupcakes which he was proud of, he came home with a goodie bag.  We are meeting my 2 sisters and their children at the 1st United Methodist church in Sapulpa, for trunk-n-treat and a carnival at 6pm for some fun...... Then it will be time for bed so we can get up for church in the morning....  

Sunday, October 24, 2010

The corn Maize...

Friday evening we had made plans to go with 2 of my sisters, their children and my mom to a corn maize outside of Bristow, Oklahoma and then spend the night with Granny and Papa.  If it rains too much they cancel it and through the day it looked like it would be cancelled and especially when I got off work at 4pm it started to rain pretty good.  I had figured we would probably end up staying home.  I was happy to find they didn't cancel it, in fact it was an AWESOME, perfect evening to do something outside.  We all had a good time.  Jeremy walked quite the distant in the corn maize, ran around the field and had a good time but I do think he was exhausted.  We got to Granny & Papa's and almost went straight to bed.  We slept til 9am the next morning...  Jeremy fell asleep in the hallway last night, but woke up in time to take his bath.  When we got home from church we have just been slugs, I think Jeremy is still tired and I know that I am......Here are some pictures of our family "fall" fun....

This was the famous corn maize, they have a path through it and you find a station and you have to stamp your card. 

Thursday, October 21, 2010

The Great Pumpkin Patch....

Jeremy is on fall break so I took off yesterday and after we went to see our AWESOME Pediatrician I took Jeremy to the Carmichael Pumpkin Patch in Bixby, Oklahoma, for some fall fun.  It is sad to say the last time I was there Jeremy was 4 years old and we went with Grandpa & Grandma Roberts which both have passed away.  Grandma Roberts passed away October 6, 2004 and Grandpa Roberts passed away November 4, 2008, they were both so dear and special in my life and Jeremy's. I kept thinking how much fun Grandma Roberts would have had with Jeremy, she loved doing things with him.

Jeremy would not pick out a pumpkin for nothing, he just wanted nothing to do with them. We walked around checked out the animals.

He kept coming back to the pony rides. I asked him if he wanted to ride and he tried to climb the fence. We went and purchased him a ticket. Here is picture of Jeremy on “blaze” he loved the ride.

Jeremy stuffed ghost at OT and SLP and this was him with Barb and Stacy hanging them on his porch.

We ended the day going to Wal-mart with the main purpose to return a pair of sweats that were too big for Jeremy and purchase him an activity book that would keep him busy while he sit in church.  We got the item returned and was extremely proud of what a big boy Jeremy was, he stood there with me in a long line and only touched the Wal-mart computer twice and he never ran off.  I found him a cute activity book that came in a holder, 4 wonder color markers and an activity pad.  I was cruising down the little boy isle to see if they had anymore sweats in different colors for Jeremy, which they didn't.  Jeremy then cruised this one toy isle for 30 minutes or more, he did very well and I was proud.  He would touch, pick up lots of different toys and occasionally tried to slip one in the basket, which my response was, "we are not buying that."  I was proud of the fact that he was fine with that decision.  He found this tree-house, that had windows that would open, a little swing and it would all open and close.  It was going to be a knock-down, melt-down fight over that.  I found a scanner and it was $20.00.  I didn't want to be a mom that would buy their child a toy just to keep them from throwing a fit, but I was yesterday.  He has been good and I haven't bought him anything new in a long time other than clothes.  He with great pride walked out of wal-mart carrying his tree house.    

Tuesday, October 19, 2010

Just for the record...

I am not a big football fan and I don't get into the games, honestly don't watch games. I am also an OSU OSU fan and love wearing Orange. This weekend is the the OU and Mizzou football game, many of you know we spent 12 days at the University of Missouri Children's Hospital and my view directly from Jeremy's window was the football stadium, "The Zou"... We were right on Missouri University Campus. We go back in January and could spend approximately 21 days, but the Children's Hospital has moved to it's new home and we will no longer be on the MU campus.

I was always giving the guy who made Jeremy's back brace, Mike a hard time and often told him I was bringing him an Orange shirt with me when we returned.

Tuesday, October 12, 2010

The day the Cop showed up.....

Oh yea, it happened. I often times last spring made the comment my neighbors were some day going to call the cops on me. Jeremy, ah precious, sweet, lovable, funny, ornery, attention seeking Jeremy who loves to throw his ball into the road. This is a game, why? It is because his mom is going to run down the road as fast as I can to grab the ball before it gets to far down the road, then when I turn to come back he darts to the road. This gives me heart failure, so what do I do, scream like an idiot for Jeremy to stay out of the road and waving my arms. We live on a busy street and cars drive fast. My little boy thrives on attention, the more he gets no matter good or bad, so it is now a game. I revised his little game, if he throws the ball into the road, we walk hand-in-hand to get the ball, he gets a spanking and the ball goes up. Jeremy just recently started the game back up, he is feeling more like himself.

Monday, Jeremy has OT & Speech therapy at the house with Stacie and Barb (who are just AWESOME). Jeremy knows when he gets off the bus they are coming so we hang out in the driveway. Jeremy helps Stacie go through her bag of goodies to pick out what he wants to work on. Jeremy worked really hard on Monday. When it was time for Stacie and Barb to leave, we go outside and Jeremy throws his ball into the road. I told him come on you know the rules. We get the ball, I throw it over our fence and Jeremy wanted me to carry him, I told him, "No, if he was going to throw the ball, we were going to go get it and he was walking with me." When we got to our fence he wanted the ball, I told him stay here and I will get it. I turn my back and he runs to the road. I spanked his butt and explain why this can't be done and made him go inside and the ball goes up. After supper he wanted to go outside, I told him wait and let me get my shoes on and I hear the door open and he is gone. I have to fly out the door to catch him, and he gets another spanking. We started walking along the ally next to our neighbors because his dog comes to the fence and Jeremy likes to pet the dog. I left the front door open we weren't that far.

I noticed a Cop car drove by and waved. I look up and he had pulled into our driveway with his lights on. My heart stopped and I thought OMG, it happened, someone finally called the cops on me. I asked him, "is there a problem?" The cop was very nice, and said he got concerned when he seen us walking and the front door open. He started asking Jeremy, what was his name, how old he was? I explained to him that Jeremy was 11 years old, has special needs and mostly non-verbal and the front door was open because he ran out the door and I had to catch him.

I remember after J's spine surgery when he quit using his legs and I had thoughts even week after we were home was he ever going to use his legs, walk, run do the things that Jeremy does.

Friday, October 8, 2010

Genetics 201....

The reason for this title, if you know me or talk to me it is no secret that Genetics fascinates me to no end and we have advanced way past Genetics 101....

Jeremy was "clinically" diagnosed on March 23, 2005 with FG syndrome by Dr. John Optiz at his clinic in Salt Lake City, Utah. We went to see him because there was no blood test and he was one of the founders, so who better to see Jeremy. The burning issue with genetics, it's a slow turning wheel, nothing happens fast, you need a geneticist who is willing to actually take on a syndrome, study, figure out what chromosome has the mutation and come up with a blood test. There are so many chromosome mutations that there just is no information on because they have not been studied.

Greenwood Genetic clinic decided to research FG syndrome and to my knowledge they have a blood test for FG1, FG2 and working on FG3. Jeremy did not test for FG1 or FG. In fact, Greenwood clinic felt that Jeremy was in fact not Fg syndrome.

FG syndrome is an X-recessive disorder. Females have 46XX chromosomes and males have 46XY chromosomes, so boys get their X from their moms. That would mean that one of my X chromosomes has some issues and Jeremy received that one.

On the long arm of the Xq28 chromosome is the L1cam gene, also known as the brain gene. Jeremy having hydrocephalus, Agensis of the corpus callosum, they wanted to test that one. Jeremy had a significant mutation but the syndromes associated with the L1cam, Jeremy did not fit he had other issues that could not be answered with this finding. They tested mine and I have the same mutation. The thought is this is not significant to Jeremy's findings. Who knows in reality until someone decides to research the L1cam gene.

Jeremy added a new twist to his picture or it's a fluke but the spine MRI we did last year showed that Jeremy had a loose ligament around his vertebrae which is common finding in people with down syndrome. Jeremy has 46XY chromosome.

Dr. Kayser our geneticist in Tulsa, recommended that we do a modern-array CGH test, this will test Jeremy's chromosomes to see if there are any mutations on any of the chromosomes. This test has only been available in the last 5- 6 years so we never did one on Jeremy. Dr. Optiz agrees and wants to see this done on Jeremy before they set in concrete the FG3 criteria. If it comes back normal then Jeremy will more than like be classified as FG3.

Dr. Optiz and Dr. Kayser both say, Jeremy is typical, clinical FG syndrome. We remain FG syndrome until further notice. If the blood test comes with a mutation this could be a whole new chapter in our live in which I will title Genetics 301....

Thursday, October 7, 2010

Precious little sleeping boy...

This morning Jeremy got up with me at 6am, he sit in the bathroom while I took my shower. When I started getting ready for work, I put him back on the bed, fluffed the pillows around him, covered him up in the comforter and turned on his leap frog night-night songs. I checked on him and this is the vision and what a precious vision it was. I bent over kissed his little face and took this picture. Heck it made me almost want to call in to work, crawl back in bed and start the day over later on........

Wednesday, October 6, 2010

Fall findings...

We went to see Dr. Winder on Monday, this is an appointment due to recent events I have rescheduled several times, but we were not too far past our 6 month check. There was a possibility at our last appointment that Jeremy had a cavity but Dr. Winder combines his work with other procedures and was excited to find out we were having surgery this past summer, but then disappointed to find out it was going to be in Missouri. Dr. Winder felt this could wait.

It was such an awesome, cool, nice morning and we had a leisure drive into T-town, Jeremy was in such a good mood. On the way to the appointment I kept thinking I really need to get Jeremy some follow-up appointments with Dr. Hall (ENT), Dr. Groves (Eyes), Dr. Kayser (Genetics). The appointment went well, Jeremy climbed in the chair and I thought he is going to sit there and let them clean his teeth well that thought didn’t last long. The good news is I only had to hold down his hands this time. Jeremy does have a cavity and it needs to be fixed and at the same time Dr. Winder will check his teeth real good and do X-rays. We have a Pre-op appointment at St. Francis Children’s on Nov. 1, Dr. Cyrus on Nov. 2 and dental surgery on November 5.

When we left Jeremy climbed into the back seat of the car, sit down and was putting on his seat belt just like a big boy. He is also pretty good about waiting until I'm going down the road to get out of the seat belt. This requires me to stop the car, wrestle him into his car seat and buckle him in. I told him, if he would sit he could ride out of the car seat but if he takes off his seat belt or gets up he will have to go into the car seat. I kept a close watch on him, but each time I looked back there he was sitting perfectly still, looking out the window and he rode all the way to school.

Some of our upcoming fall activities. Jeremy is out of school October 20, 21, 22 for fall break. I am going to take off that Wednesday, and after our 6 month check on his ADHD meds & our flu shot with Dr. Cyrus we are planning a trip to the zoo to spend the rest of the day. J’s Para-professional who is also our HTS will watch him Thursday and Friday, so he will have fun with Misty being back at his house. Then after I get off work that Friday, we are going out to Granny & Papa's and will go with Granny, my 2 sisters and their children to a corn maize outside of Bristow. You go through the maize with flash-lights when it’s darker, there are other fun things for the children to do. I think Jeremy will have fun with his cousins. We will probably spend the night with Granny & Papa. Friday, October 29 I will be up at the Children's Hospital helping with the fall party for the children who are in the hospital. Saturday, October 30, Jeremy has a Halloween party at Respite and then I plan to take him down-town to the Sapulpa trick-or-treat, or go to my sister's church for trunk-and-treat. We are going to skip Jeremy's school carnival this year, he doesn't really like the games and just likes to walk around so I think something outdoor he will enjoy more.

Saturday, October 2, 2010

The word is.....

Jeremy will have his posterior spinal fusion on January 28, 2011. That would put us doing a pre-op appointment on January 17, the next day Dr. Dan putting him in halo traction either under general or sedation. J will stay in traction until his surgery. Holly was going to verify that with Dr. Dan but from what he was saying in our office visit that all sounds right. We will become residents of Columbia, MO at the University of Missouri's Women & Children's Hospital for about 21 days.

Prayer request: Jeremy to stay healthy, tolerate traction so his spine can relax and stretch naturally. Dr. Dan as he prepares to put J in traction and the spinal fusion. He feels the less he has to do to J's spine during surgery the better it is for Jeremy.