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Monday, September 27, 2010

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.

Saturday, September 25, 2010

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.

Tuesday, September 21, 2010

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".

Monday, September 20, 2010

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.

Sunday, September 19, 2010

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.

Friday, September 17, 2010

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.

Monday, September 13, 2010

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.

Sunday, September 12, 2010

What a wonderful weekend...

Jeremy started back to school all day last week and did good, this included he had to start back to morning latch-key. I must admit this was an adjustment for me, I've had a summer of being spoiled with an HTS coming to the house. I just had to get myself ready and out the door so now it's back to getting us both ready and out the door in a timely manner. It was also a busy week, I had 2 parent meetings after work and Jeremy had an appointment on Wednesday to get his brace adjusted and new AFO's. I was exited to see Friday come and the thought of nothing planned.

Saturday morning was nice, we slept in, got Jeremy's breakfast and me coffee. We were able to take our time getting dressed. We went to Wal-mart to get his prescription but he was being so good that I got what groceries I could think of we needed. I took Jeremy to Tulsa to visit one of his teachers he had while at Happy Hands, she was having an Avon sale. We came home, made some meatballs from a recipe my pastor's wife gave me, settled in for the evening.

This morning we had such an awesome, sweet worship service and a great sermon. We even stayed for dinner.

There is so much to be thankful to God for and I am blessed beyond words and more than I will ever deserve. I think some good highlights, getting a video of Jeremy walking and Dr. Dan able to see it and stating what great news that was, Jeremy's teacher telling me that if I don't want to send the wheelchair I don't have to because Jeremy isn't using it, a note from our PT stating Jeremy continues to make progress and builds his skills. Jeremy isn't back to where he was before surgery but he's getting there.

Prayer Request: Jeremy continue to stay healthy and build up them muscles. Dr. Dan as we go back to see him in 2 weeks and he makes plans for J's 2nd surgery.

Friday, September 10, 2010

When I let it go

This is a song by Sierra, they are one of my favorite Christian women groups. I have loved them for years. I love the words to this song probaly because this is exactly in sync with what GOD is teaching me.

I have recently came back to a realization. I say come back because this isn't a new lesson I'm learning. There is somewhere along the way I started thinking I was more than I am, and thought I had control of my life. I accepted Jesus Christ many years ago and I totally commited my life to him. I need to daily, alright I am hard-headed & OCD so sometimes it’s a minute by minute lesson for me to commit and surrender that control back to God that I'm holding on. I need to be able to give God a 100%.


This time I've got to trust You
I've got to accept Your plan
I have tried to guide my circumstance
But there's just no way I can
When will I learn this lesson
Your ways are not like mine
Lord, help me to surrender
The control I try to have on my life

When I let it go
You take my hand and gently lead me
Then You let me know
Just how peaceful my life can be
When I let it go
Your never-ending blessings
Like a river start to flow
When I let it go

Too many times I'm searching
For the things I think I need
When I try to look for more
I always seem to give You less of me
Lord, help me gain this wisdom
My foolish mind still lacks
'Til I find a way to let go
Of the part of me I'm holding back

Monday, September 6, 2010

Jeremy walking on 9/6/2010

video

One Month ago...

I can't believe that one month ago today, Jeremy had his first spine surgery. The day started out great. We arrived at the hospital to check in at 5:30am, Jeremy did well during surgery, a surgery that went as well as Dr. Dan expected was also a day that our world was temporarily changed. I got to see first hand the reason GOD sent us to Dr. Dan, not only a surgeon with expertise into complex spinal issues, but a truly beyond, caring, compassionate physician who had Jeremy's best interest in mind. A season that GOD has used to teach me many lessons, remind me of the things I have taken for granted, one of which was my personal relationship with GOD. I had allowed GOD to take the back seat and put myself in control.

Tomorrow it has been 3 weeks since Dr. Dan and Dr. Robertson released us and we left University of Missouri, Children's hospital and in 3 weeks we go back to see Dr. Dan.

Dr. Robertson was the resident we had, we seen him almost as much as Dr. Dan. Dr. Robertson rotated out in August so when we go back we will not see him, I told him we have to get a picture of him and Jeremy. This picture is right before we left, Jeremy (notice J's MIZZOU shirt, I'm quite proud of it) and Dr. Robertson.

Dr. Robertson was the one who woke me up at 6am each morning and was awesome with Jeremy. I really liked him. I was talking to him before we left and told him we would be back, he said he was going to watch the board and keep up with this little guy. That touched me, and showed he truly cared. I like to see the residents, and hope that the experience with Jeremy and I will impact the way they treat families in the future to truly make them family centered doctors. Dr. Robertson never questioned my insight into Jeremy and respected my expertise. I appreciated that and feel he doesn't have any improvement to do in the area of being a family centered physician, he is there.

I will get a picture of Jeremy and Dr. Dan at our Post-op visit.

The day we came home J couldn't tolerate sitting up, let alone put any weight on his legs. In the weeks we have been home Jeremy continues to gain muscles, strength and lost skills. Jeremy had PT on Tuesday and the therapist said this was a 100% improvement from where he was at one week ago, which is his story.

Jeremy has transitioned back to school full time and doing well. He only stays in the wheelchair approximately 30 minutes a day, he is sitting at the lunch table eating with his peers. Jeremy is crawling everywhere, cruises around furniture and just last week starting to take just a few steps on his own. At church yesterday, Jeremy told me he was wet, on his own he walked from the nursery to the bathroom, pulled down his pull-up, I sit him on the potty, he sit there for a bit, got up and washed his hands. This morning when he finished his sausage, he got up from the table and put his plate in the sink. I am looking at a living room of cushions being taken off the couch, walking around the house, opening doors, turning lights off behind him. One of the fondest memories I have of this past summer was Jeremy each morning going from the bedroom to the living room looking out the window waiting for Misty to arrive. I watched Jeremy walk over to the couch, grab the "Inside Columbia" magazine and for the first time stop and look out the window. I am sitting here watching my son, laugh and read the magazine. He has been walking most the morning with no assistance. Jeremy just came into the living room with my shoes on, very proud of himself, walking on his own.

Continue to pray Jeremy to stay healthy, muscle strength and Dr. Dan as he decides when and prepares for Jeremy's spinal fusion.

Thursday, September 2, 2010

1st full day of 5th grade...

Today was Jeremy's first full day of the 5th grade. The little monkey has had all summer he could sleep in but he would get up but this morning he actually went back to bed...go figure. I went in late so he could ride the bus to school as I'm trying to slowly get him back into school. He ate a good breakfast of 2 sausage patties, 1 bowl of oatmeal and a banana cream pedisure. We got dressed in our new school clothes, got into the wheelchair and went outside to wait on the bus. We passed time by him throwing me the ball and me chasing it. When the bus came I put him on the stairs, he walked up the stairs with assistance and sit in his seat. I checked on him through the day, his para sent me a few pictures and updates on him. The story is he only stayed in the wheelchair approximately 30 minutes, spent the rest of the time walking around holding on to things and in the lunch-room he sit at the table. I was not surprised to take a very exhausted, cranky boy off the bus. I had arranged for Shawna one of our HTS to come this evening so I could go visit families. When I got home at 7pm, she said he got up on the couch and would drift in and out of sleep. I gave him a nice warm bath, massaged his legs really good and gave him some children's Tylenol to hopefully help him be able to relax and sleep. Tomorrow is the same routine, and Amanda his PT will be at the school to work with him so I really expect a tired little boy. I thought this would also give him 3 days to recover before starting back Tuesday in full force.

Continue to pray for Jeremy to stay healthy and for continued progress on his muscle building. Pray for Dr. Dan, we go back in 3 weeks for our post-op visit and to see about the spinal fusion.