The plans of change....

Life is all about changing, nothing stays the same and plans are not immune from that theory, in fact plans are just that.  Plans are also normally human plans and we get upset because it is not God's mighty plans.  Jeremiah 29:11, has been imprinted on my life this year for many reasons.       

We left yesterday morning for a fun-filled adventure to see Dr. Dan and get our Pre-op appointment done.   This trip we took Granny and 1 of my nephew's Johnathan as travel companions.  I had reserved a motel at the Fairfield Inn so we could play in the in-door pool and Whirlpool.  I also decided this time we would try a different route from the one we've taken many times.  We got off in Joplin and took the Kansas City exit and hit Hwy 71, then hit I-440 or some interstate but the goal was I-70 East into beautiful, home away from home Columbia, Missouri.... It was a nice break, different scenes but somewhat boring.  It did however seem to be a quicker trip.  The closer we got to Columbia, we seen snow on the ground and it was pretty.  We got to the motel and I took a picture of my nephew in shorts with a snowball in hand, only red-neck, OKIE's travel the end of December in t-shirts and shorts.  I got to meet up with Amber, our social worker and she gave me a quick tour of where Jeremy would be.  I stopped at Pizza Hut got us dinner, back to the motel, and then hit the pool and whirlpool.  Jeremy actually got all the way in the whirlpool, sit down in it and played and splashed around.   

We got up bright and early to make our 9:15 appointment to see our super-hero Dr. Dan, and his assistant Holly.  He stuck his head in and we visited for a while, then they took J down to get his X-rays.  We came back to a new resident who was extremely, extremely nice asking questions about Jeremy.  I'm sure that I will like the other residents we get, but they are going to have to do back-flips to beat Dr. Robertson, he is my all time favorite resident ever.  Dr. Dan came in and decided he wasn't happy with the fact Jeremy would only be in traction for 10 days, so change of plans.  Jeremy will be admitted on January 12 and put back in halo traction.  This is the "plan", Jeremy doesn't always do things as planned, I know he has always wrote his own book since day 1 of his life plus this is the spine and it comes with no guarantees.  Dr. Dan said there might come a time we have a heart to heart talk about a difficult procedure that is risky.  He wants him in traction so he can naturally relax and straighten J's spine, I totally get why and the purpose for this, he wants his spine to straighten, wants to see who the spine reacts once it does straighten and doesn't want nor plans to do lot of manipulation of the spine during surgery.  He will want Jeremy up with therapist walking around, so Jeremy will be up, get to play, go to the playroom.  Jeremy will not be on pain medicine during this time, children tolerate this procedure well and it will be more the aggravation of that halo back on his head.  They have awesome therapist, child life specialist.  He wants to see how Jeremy's spine responds to the traction and as his spine does some relaxing and straighten to make sure it doesn't compromise his spinal cord.  His main objective in this is for Jeremy to remain mobile and to stop the progression.  Jeremy's spine didn't like the first surgery, so he is very cautious and moving slowly.  I totally respect this man, honor his expertise and know to the very depts of my heart and soul he is doing what is right by Jeremy.  He doesn't hide anything from me and speaks up-front about all issues.  Dr. Dan doesn't make any rush decisions on J's spine.    

What are the prayer request:  That we have good traveling weather.
Jeremy- remain healthy, he tolerates halo traction, be able to rest, his spinal cord to be healthy and tolerate the halo traction and God to be able to use this method to naturally, relax and straighten out his spine.
Dr. Dan Hoernschemeyer- as God uses him to be the hands, brain, eyes to fix Jeremy's spine. 
Me- for strength, endurance, rest, and if decision have to be made that I have a clear mind with wisdom.  I am also having anxiety about the whole ordeal now, so that I can rest now, live life the next few weeks before we go back. 

Many have asked what you can do while we are there.  The biggest thing is prayer.  The University of Missouri has a new children's hospital with private rooms so I will be staying with Jeremy during the entire duration, I have plenty of sick leave and vacation from work.  They also have a cafeteria on the 1st floor and the social worker said it's very reasonable price, where the children's hospital is, there is McDonald's, apple bees, chili's around so there are places I can go get some healthy meals that are reasonable.  I don't want to deny anyone the chance to bless someone.  If you want to send encouragement cards that will be appreciated and I will post the address and Jeremy's room number when we get it.  Don't worry about snack foods, I am totally a "stress" eater so if I have any type of snacks around I eat on them.  I personally prefer not to take lot with me and if I get hungry go get something, if anyone wants to bless with gift cards that is great.  It is a 6-7 hour trip so I don't expect a whole lot of familiar faces from Oklahoma, but for any that do it would be AWESOME to see some familiar faces during our extended stay.  I can tell you Columbia is an AWESOME, NICE, town that is easy to get around in.  You all who know me, know that I am not afraid to talk to people, families who have children with special needs seem to come my way.  I already have a hand full of friends in Columbia. I have been communicating with their medical director, Dr. Timothy Fete and he is going to give me the "GRAND" tour of the facility so I'm excited about that.  Jeremy will be set with his DVD player going with us and his i-phone that I plan to download him some games.

Address:  The Univeristy of Missouri Children's Hospital, 404 Keene Street, Columbia, MO, 65201, you will want to be sure and put Jeremy's room number and I will post it when we get in a room....

Merry "Christ" mas pictures....

The first present of the morning, I told Jeremy let's go see what is under the tree.  He got up and ran into the living room. 

He wasn't overly excited to receive a Toy Story, toothbrush, toothpaste and flossers.

He was excited to open his Toy Story 1, 2 & 3 and then Cars movies

Wow, he was very excited, this came with his toy story backpack

The backpack

Alright an i-phone, I got this one all figured out.  It is for educational purposes.  I downloaded Voice4 U software to help him speak

Jeremy with Mommy in front of Granny and Papa's tree (that was my hat, he stole it off my head when we got there and I went to get him out of his car-seat, and wouldn't let me have it.)

Merry "Christ" mas.....

We woke up this morning to a some rain and a little chilly.  Jeremy is spending Christmas Eve with his dad and will be home in the morning.  On the way we made a stop at McDonald's and got Jeremy a big breakfast platter.  When he gets home in the morning we will open gifts and then go to my parents to spend the day. 

I went to help deliver meals to the families at the Children's hospital.  We have never spent Christmas in the hospital, but we have spent Mother's day and Jeremy's birthday, it's a place no one wants to be but for children who have special medical or needing emergency medical treatment it's a necessity.  If I can help bring some cheer and smiles to the family or children it makes my day.  I'm also grateful for the companies, people who also share a passion to make a tough time special for families and their children.   

Let us be thankful for the many blessings we have and not forget the reason for the season, which is the birth of our Lord Jesus Christ......

Our upcoming prayer request...

I know many of you have continued to pray for Jeremy about his spine situation and I am so grateful and as of Saturday we are down to the 1 month mark of him being admitted. We will be seeing Dr. Dan on December 30 at 9:15am this is our pre-op visit, I’m super excited for him to see Jeremy since he has made so much progress since we even saw him in September and I know it does him good to see Jeremy doing so well.  We will leave his office and go do our pre-op at the hospital.  We will come home and live a normal 2 week life and travel back to Columbia, MO on 1/17/2011 and the next day Jeremy will be admitted and put back in halo traction.  We remain residents of the University of Missouri Children’s hospital, January 28, Dr. Dan will do the posterior spinal fusion and we will be there approximately 5-7 days before discharge to come back home.

Specific prayer request: Jeremy continue to stay healthy, he has done very well thus far.  Pray for good weather so we can travel, I'm actually rejoicing and praising GOD for the mild winter we are having.  Pray that Jeremy tolerates the halo traction for the time frame, Dr. Dan is wanting, this is important because this will be the correction to the spine we get.  Dr. Dan already told me he wasn’t going to do lot of manipulation of Jeremy’s spine, he said I did it once and his spine told me it didn’t like it so basically when he fuses the spine he is going to fuse the way it is, which Jeremy can live with his spine the way it is just can't progress anymore.  Pray for me during the traction time, Jeremy is going to be upset, mad, cranky, demanding, he will be allowed to get up, in the wheelchair, go to the playroom, and walk around with assistance but it's going to be a trial time for me.  Pray for Dr. Dan, he calls the shots when Jeremy is there, but I know from our previous experience he always discuss the issues with me and is going to do what he feels is in Jeremy’s best interest, and that is what I Love and respect about that man. Pray for Dr. Dan as he does the posterior spinal fusion and Dr. Craig Kuhns which is the physician who helps Dr. Dan with all his posterior spinal fusion surgeries.  I will meet Dr. Kuhns while we are in the hospital but this man has a great deal of expertise as well.

If you want to send letters, card to Jeremy while we are there:  The Univeristy of Missouri Children's Hospital, 404 Keene Street, Columbia, MO, 65201, be sure to put Jeremy Roberts and his room number when we get one. 

What will I be today...

Jeremy has that little book, it starts out with a carpenter who has a tool box, a teacher with an apple, ABC and stuffed animals and a Pediatrician w/ medical bag listening to the dolls heart, it goes on with architect, artist, race car driver, chef, mail carrier and zookeeper. I try to add lots of animation since Jeremy responds to the expressive voice. I am surprised at each time he brings me the book and we start to read it he goes to the page with the Pediatrician and won’t let me turn the page.


The bible tells us, “in order to come to Christ you must come as a child” or “a child will lead them”. My son is a leader and teacher and I still an in awe at how the little simple things GOD uses these points to teach me through Jeremy, something as simple as his, “What will I be today” book.

The thought was what will I be today? What am I today? We all wear many different hats. I am a scheduler for OG&E and schedule the Sapulpa-Drumright District jobs to work. I am the regional coordinator for the Oklahoma Family Network, I train supporting parents, I support parents, visit families, coordinate toys 4 angels, Tulsa Sibshops. I am a daughter, I walk into the house last night with my phone ringing, and my dad saying, “do you want to talk to your mom” just walked in I hadn’t called her but realized I don’t know that I talked to her since the weekend. I am a sister, talked to one of my sisters yesterday about meeting up to exchange some stuff, thought about my other sister wondering if she is going to Columbia, MO with Jeremy and I over the holidays. I am a mother to an amazing little boy who is closer to the heart of GOD at 11 years then I will ever be in my life, he is so amazedly innocent and just loves because he loves. I am a friend, yesterday several of my friends had birthdays, I posted on their facebook and called 1 of them.

These hats can all change at any time, but one thing for certain that will never ever change, I am a sinner only saved by GOD’S grace. This hat will remain in effect until GOD calls his people home. I am so grateful that I have GOD’s grace to help guide me, love me, lead me in the right direction and I have to choose who will I be today? Will I be a Christian who lets GOD loves flow through and points others to Christ or will I give into the temptations of the world, and sin.

What will you be today?

"I really need help"....

Jeremy told me yesterday, "I really need help"  this was only after he brought me a fruit cup and pudding cup he wanted to eat.  I told him go get a spoon, he would say, "help", I would say if you want to eat this you need to get mom a spoon and he finally did.  

I really don't understand the reason my son wants to put everything in his bedroom and then close the door, but it's an obsession with him and he cracks me up.  I'm doing 30 minutes last night on my treadmill and hear a "loud" bang, so that means something fell, I went to see and meet my son coming from the bathroom to his bedroom with his arms full of cleaning supplies.  He knocked my cabinet in the bathroom over, I'm not sure if he was trying to hide the evidence before he got caught, thought his room was dirty.  I'm not even sure why he felt he needed them items.   

The sounds of Christmas in Jeremy World....

It's beginning to look lot like Christmas....

in Jeremy world.  I have honestly been in the Christmas spirit for months but refused to decorate until the month of December and we have just been super, busy, crazy in our world.  I have watched the movie Elf at least 10 times this year, on the Christmas Committee at work so buying presents for 54 children, adopting out our OFN families plus I have my Christmas shopping finished sure helped put the Christmas spirit button over the edge.  I never put my tree up before my birthday on December 6, I use to make mom put ours up on my birthday because it made me feel special and I carried that tradition to my house.  This year for the first time when December 1 arrived our Christmas tree was up and decorated, it no longer has any decorations left on it but I got a pre-lit light so you can get away with minimal to none decorations.  I got out all the inside decorations, Jeremy's singing Mickey mouse town, singing Christmas wreath, singing reindeer and singing Christmas tree do you catch the theme that they all sing, they are all compliments of Granny Baker.  It's funny that my mother feels out of her 11 grandchildren that my son indeed is in need of these singing Christmas decorations.  What is even funnier this past weekend she stayed with Jeremy at my  house while I was in OKC for our Oklahoma Family Network staff meeting and I come home to a singing Christmas wreath that had been switched "off"........ she told me Jeremy needs them not her, huh?  I have some outside decorations but still have work to get them turned on.  I hope to finish by this weekend so J can have some yard decorated, this is another first for me I have never decorated outside probably why it is taking me so long I don't know what I'm doing, I tried to get my brother to feel sorry for his sister and come help me.  I will post pictures of Jeremy's singing Christmas decorations and some of my outdoor decorations later this week or over the weekend.

Jeremy continues to stay healthy, he's had a few allergy outbreaks, a few stomach virus issues but THANK YOU GOD they were short lived.  We picked up his shoe lift yesterday, put it on and out the door he went running, if it is even possible he seemed to have gained speed.   His balance is also much better since the shoe lift. 

I am literally counting the days until our Christmas vacation, I had mentioned we have been crazy, busy.  I have Tulsa Sibshops this weekend, plan to take Jeremy to the Sapulpa Christmas parade that evening.  The next weekend is my Metabolic/genetic support group and I will meet and deliver presents for our OFN Toys 4 Angels.  Jeremy gets out on December 18, I work until December 22 and then we are both off until after the first of the year.  I am ready for this time off, deserve this time off, need a full vacation and have not taken off since this time last year.  We are going to rest, relax and enjoy Christmas fun.  Jeremy will spend Christmas Eve with his dad.  I will be up at the Children's Hospital to help deliver meals to the families who are impatient.  We will spend Christmas day with my family, eating, playing games and come home totally exhausted.  We will get up Sunday morning and go worship GOD in our church.  The rest of the time is what we want to do when we want to do it other than we will be making a return trip to Columbia, MO on December 29.  The next day Jeremy has a 9:15am appointment with Dr. Dan and hospital Pre-op, and then the return trip home.  I'm not sure about New Year Eve's, the last few years we have went to my sisters, I watch her children why they go out, we make lots of food, play guitar hero and still in bed by 10pm but they are going to be in CA.  We may just have to stay home this year. 

A morning in Jeremy world....

Jeremy has started saying, "I make" well this morning he brings me my coffee pot as I was getting out of the shower and said, "I make _____" not sure what he said after that, probably I make coffee because you really need it this morning.  He watches everything I do, he is really observant so on Saturday and Sunday mornings he sees me make coffee.  I told him mommy wasn't making coffee this morning, he turns and goes back into the kitchen.  I found my coffee pot in the ice-box when I went to get his lunch out.  I had to giggle and wondered what he was thinking. 

Thanksgiving Holiday

                 Give Thanks and that is what we did, had an absolutely GREAT thanksgiving weekend, truly enjoyed the lazy days of freedom.  Jeremy was out of school on Wednesday and since Granny was going to watch him for me, he went to spend the night on Tuesday.  I was home alone for the 1^st time since last May so the house was a little on the quiet side.  I did miss my little boy, since he had such a tough time with his spinal surgery I have been clingy with him.  Thursday, J’s dad came to see him and stay with him while I went to the Children’s Hospital to help deliver meals to families who had to be there on the holiday.  It is always a humbling experience because that can always be us.  When I got home we went to my sister’s in Sand springs to spend the day with her family, my mom and dad and my brother-in-law's brother.  My sister did all the cooking and I was honestly just a slug.  It was a little on the hilarious side to watch my brother-in-law, his brother, my nephew and my dad bowling on the Wii, sure wish I had my camera to video the event.  Jeremy was lazy and slept until 10am on Friday and his dad came back to see him so I went and did some Christmas shopping.  We got up Saturday morning and I fixed my homemade chicken and noodles, sweet potatoes and fruit salad that J loves to take out to my family Thanksgiving dinner, it was the Baker's annual dinner.  It was another nice day with GREAT food, company and awesome weather.  I had 2 of my cousins come from Agra that I’ve not seen in many years and not only honored my request of bringing me a piece of Oklahoma’s Very BEST red velvet cake but made an entire cake so I got to pig down 2 pieces.   We had our “annual” Baker kick-ball game and I’ve included some of the funny pictures below.    

Jeremy and I were the pitcher (actually I was he was just being clingy) my brother Jamie kicked it and I actually caught it so he was out !!!!!

I was playing 1st baseman, my brother ran and smashed my foot 

My dad (standing) visiting with my 2 cousins, Jeanne and Judy from Agra and Jeremy trying to take off my sunglasses. 

The entire Baker family, mom and dad with all of their kids, with all their kids...

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. 

 

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

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....

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.

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.....

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. 

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.   

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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....  

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. 

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.    

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.

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.

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....

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........

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.

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.

Another Superhero !!!!!!!

God has always been faithful to send AWESOME Christian doctors into J's life, ones that truly have Jeremy's best interest and our experience with Dr. Dan Hoernschemeyer has been no different. He is a physician we met back in February and he did J's anterior release on August 6. He has became a superhero in our lives and far exceeded my expectations. Dr. Dan has been there from the beginning and continues with a genuine, care and compassion for Jeremy. When a surgeon tells you that he is praying for your son and has others praying, that is special. If you missed the surgery postings you can go back to the previous post.

This is our superhero's amazing medical assistant Holly, who was always there getting answers to all my questions, which you all know me and there was plenty. Holly also had to coordinate the 2 surgeries between 3 surgeons. Holly emailed me the morning of surgery asking me how I was doing, and when I hadn't heard anything she called into surgery for me.


Today, we had our 6 week post-op appointment and it was nice to see Dr. Dan and under much less stressful situation. I have to admit pulling into the parking garage caused a little bit of anxiety but it didn't last. He was pleased with progress that Jeremy has made and took a video of him walking. I knew he would be pleased once he got to see Jeremy. He wants to give Jeremy more time to build up his muscles. We go back in January and Jeremy will go back in traction for approximately 2 weeks, he will be able to sit in the wheelchair and be upright. Then he will do the spinal fusion. Dr. Dan feels J will tolerate it better since he won't be recovering from a spine surgery, plus he wants to naturally relax and stretch J's spine. I totally understand why he wants this and I know that Dr. Dan has given this decision lot of thought, consideration and prayer. I also know that Dr. Dan has Jeremy's best interest in mind when he came to this decision, he proved that during the first surgery. He feels the less he has to do to J's spine surgically the better. Jeremy's spine already told us at his last surgery it didn't like this. We are aware that Jeremy is Jeremy and doesn't always do things by the book and may not tolerate traction. It is also during winter so like Jeremy not cooperating the weather may not either. Jeremy will need to stay healthy, which the last few years he has.

If one thing GOD taught me this past summer is my plans are not his, and his plans are always best. If you notice this was the first time in my post that I used the word "plan". I am totally at ease about this and actually the word relieved comes to mind, I wasn't looking forward to having Jeremy having another surgery so quick.

What are we going to do? we are going to enjoy the upcoming seasons. The fall carnivals & festivals where Jeremy will be a teenage mutant ninja turtle. The season of Thanksgiving, giving thanks to our creator. This year our child life specialist are going to be out of town so I volunteered to be in charge of coordinating the feeding of our families at the Children's hospital. We will then enjoy the reason for the season and celebrate Jesus birth. I am excited because last year the day after Christmas I went shopping and bought yard decorations whcih include a 4 ft Christmas bear, 6 ft Christmas snowman for the lawn, lights and icicle lights. Jeremy's yard will be decorated.

Aw the sights of fall....

We had a beautiful day yesterday and not only is this weekend suppose to be nice and cooler so is the upcoming week.

Our County fair in Creek started on Thursday, we hadn't made it the last few years but this year I took Jeremy, my mom, two of my nephews and we met my sister and her daughter out there. Of course no fair trip is complete if you don't have a funnel cake so I had to have one. This is just another reminder to me that fall is here, one of my favorite seasons.

Here is Mr. big boy walking by one of the rides, we were waiting for my nephews to get off.


The Merry-go-round was the only ride Jeremy could really ride and boy did he want to ride it so bad. He kept getting in line and couldn't wait for me to get him a ticket. Jeremy and I rode this ride.


Yes, Jeremy was climbing up the gate and do you see why, he seen 2 other boys do that and he wanted to do what they were doing. I was right behind him and it was cute he just watched and talked to the 2 boys.


We went inside to watch the Jr. ranch rodeo, Jeremy watched for a little while but kept wanting to go in the bleachers.

Help Me...

This morning Jeremy was sitting on the floor and I was getting ready to leave the room and said to him, are you ready. He held up his arm and said, "help me".

A weapon of Mass-destruction !!!!!!

We hear this term in our day and times frequently, but I am referring to the term in Jeremy World. I had mentioned that I was going to write a book so this is a good way to document these happenings. I was getting J ready for his bath, so I took off his muscle shirt and went to run his bath water. I come into the kitchen to collect the little bug for his bath and not only did he take off his back brace but he is standing up in the seat of the wheelchair. He wanted something off the top shelf and this was a way he could reach it. I almost went into heart failure and thought here we are 5 weeks post-op from having T5 - T10 fused and that is all I need is for him to take a tumble. The wheelchair is officially taken down and stored in the closet.

J worked hard today. He had Speech this evening and our 3 OU students wanted to observe. It took him a while to settle down, but the students were able to hear more speech from him.

It's 8:18pm, and I am putting Jeremy to bed. I have a meeting in OKC tomorrow so we will have to get around.

A blah day....

Our Sunday started out Awesome, great worship, great sermon and I was so excited to go to the OFN reunion. I don't know what happened to my day. We were ready and heading in that direction, I stopped and filled up the car went through McDonald's drive through for a drink and J some chicken nuggets. Jeremy was cranky and it was hot. J loves the Jupiter jump and there was going to be one there, it hit me, he isn't even 6 weeks from major spine surgery, idiot he can't get on that. There would be a battle of the wills on this one and I decided that I didn't want to deal with that. We exited the turnpike in Bristow and went to visit Granny and Papa. We visited for a while, ate dinner with Aunt Jean, cousins and Jeremy roamed and played.

It's been I have the blues day. I believe it's because the last 5 weeks as been a constant run, so much excitement going on, getting J what he needed, getting him back to school, the progress he has made to build up them muscles. Here we are one week from his 6 week post-op visit and it's like someone has slammed on the brakes. It's all the sudden nothing going on. I think I also dread the visit knowing we are going to talk about the next step, what, when and how.

Prayer request: Jeremy, that he continues to build up muscles & continues the progress, and for healing of his spine. Dr. Dan Hoernscymeyer, as he assess Jeremy and decides the next surgery. Me, as I deal with this, make decisions on behalf of Jeremy. Pray for us a safe trip to Columbia next Sunday and a safe return trip on Monday.

Life is a roller coaster….

or at least mine seems to be one, but I always loved the roller coaster rides they were my favorite and I'm loving life.

Monday, I was reading the daily notes from J’s teacher. The note stated that Jeremy was dragging his left foot and had an episode where his body was facing one way but his eyes were fixated in a different direction. My mind went straight to OH MY GOSH, he’s had some sort of stroke or his spine has totally freaked out. I am mom and I have retained the, “freaking out rights”. I talked to the Para and she said it was more of him limping but he had a very busy, active day. He was walking fine at home, and I always take off his AFO to give him a break. I asked the PT when she saw him on Tuesday to check the AFO and if it was causing him problems then to leave it off because we have been casted for new ones and he will get them in a few weeks. This roller coaster ride comes to an end.

Tuesday, I received a text from school that Jeremy’s knee was swollen and OK back to the freaking out rights I have retained. I thought OMG he has done something to mess up his knee and hello roller coaster. I called Holly to see if we needed to get it checked out or come see Dr. Dan a little earlier than scheduled, say the word and, my life is also a highway. I gave Jeremy a long nice warm bath and some Advil to help with inflammation. The next day Jeremy’s knee was a little swollen but he was doing fine.

Wednesday, we met our 3 Oklahoma University students who were assigned Jeremy. I always enjoy meeting our new group. I learn from them because they research, they are new eyes on Jeremy and they take a neuro-class which fascinates me. I also like the fact they are getting a front row seat into Jeremy World and the hope that it will impact the way and make them become really family centered therapist. Jeremy got 3 girls this year, he was sure having fun, kept 1 busy throwing the ball all over the house, kept 1 busy by putting her in his room and opening and shutting the door. He then got tickled and couldn’t stop laughing and had everyone laughing. They had already been doing some research on FG syndrome, and Dr. Hoernschemeyer. They are coming back on Monday to observe Jeremy’s during his OT/SLP session.

Thursday, Matt Cobb our positive behavior teacher from ETL was there to get Jeremy off the school bus. I had mentioned earlier we had not seen Matt since we were in Osage Beach. That was in July when my sister, her daughter, Jeremy and I took our mini-vacation all focused around our Pre-op appointment in Columbia. Matt just happened to be in Osage Beach on vacation with his awesome family. Matt was impressed with Jeremy and he didn’t expect him to be moving around so well. Jeremy even went outside to play ball, he refused to climb the stairs to his play-set but had to do his spider-man crawl up his rock wall and back down.

It’s Friday, the roller coaster ride has ended at least for now so I am taking the afternoon off from my OG&E job to catch my breath. I need to go to Tulsa and get some things marked off my to do list before Jeremy gets home, plus the thought of a nice quiet house will give me a good chance to get my OFN computer work caught up. It has been a busy/crazy week at work.

I have motel reservations made for Jeremy and I, this is for next Sunday as we return to see Dr. Dan for our 6 week post-op appointment on Monday. I am excited about the trip, I just think it will be a pretty, lesiurely drive. We are stopping in Versille, MO to visit a special family who came to visit us while J was in the hospital. I can't wait for Dr. Dan to see Jeremy and how much progress he has made since we were released, he has received e-mails, pictures and video but I think putting eyes on him. I want to know how Jeremy's spine looks after his last surgery, how it is healing. I will be at ease when I know his thoughts on the spinal fusion, some details and when.

Good Morning Monday and week....

It's a beautiful day in the neighborhood a beautiful day in the neighborhood oh won't you be my neighbor........

It was a wonderful Monday morning. Jeremy did sleep a little better and woke up so much like Jeremy. He would not lay back down and while I was taking my shower I was being pelleted by flying fruit cups. When I was trying to put on my makeup he was insisting on me feeding him the fruit, I told him go get me a spoon. He left and came back with all the spoons and I had to turn my face to giggle because this is just a Jeremy thing. When it was time to leave for school, I told J, "go get in the car" and he did it, he of course had to pick up 1 of his bouncing balls. When he went to climb in the back seat he pushed his car seat out of the way because he doesn't feel he needs to sit in it, but I know he doesn't stay seated so it's not an option. When we arrived at school, I put his AFO and shoes on, sit the stroller out, put him in it went to reach in for his backpack and he was out of the stroller. He decided he needed to push it. Once inside the school he took off to the opposite direction and he knows he is not suppose to, a quick look at Misty and he came back over there. This is all such typical Jeremy attitude that I've not got to see in a while, so a challenging morning was a welcome sight.

I came to work to a team meeting and our yearly United way presentation, with a very inspirational speech from our VP. I love my job at OG&E, I love my co-workers and the way they care about the communities we serve. This also serves as a reminder that Fall is knocking at our door steps. I love fall, to see the colors change. I am excited about our trip back to see Dr. Dan in a few weeks to Columbia, MO, it will be a pretty drive with the colors changing. I love the cooler temps, fall festivals, thanksgiving, Christmas.

Tonight is we have nothing to do night. I will visit families in the Children's hospital tomorrow evening and Jeremy go to respite. Wednesday we meet our OU PT/OT students for the first time, these are the ones who were assigned Jeremy. Thursday, Jeremy will have behavior therapy with Matt for the first time since July. I actually think the last time we seen Matt was when we were in Osage Beach, I happened to post something on facebook about Miner Mike's where I was taking Jeremy to play that evening and he was on vacation with his family. Friday is we have nothing to do night. Saturday is Metabolic/genetic support group meeting and Jeremy will attend respite so that is my "me" day. Sunday after church we will go to our annual Oklahoma Family Network Harvest of Hope Reunion at the Harn Homestead in OKC. We get to meet up with families we have known through the years, friends and new families.