Thursday, December 30, 2010

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....

Monday, December 27, 2010

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.)

Friday, December 24, 2010

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......

Monday, December 20, 2010

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. 

Wednesday, December 15, 2010

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?

Tuesday, December 14, 2010

"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.   

Tuesday, December 7, 2010

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. 

Thursday, December 2, 2010

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. 

Wednesday, December 1, 2010

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 1st 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...