Monday, January 31, 2011

In honor of our "super-hero" Dr. Dan

I will be brief in my re-cap and how Dr. Anagnost, our ortho in Tulsa who followed Jeremy gave me the advice to find someone who does this often, and they are equipped to deal with Jeremy in case something happens, he said there are no guarantees and that way you have no regrets.  I prayed for GOD to heal J's spine without surgery but if surgery was required then to help me find who he has picked out.  I commented many times that Columbia, Missouri wasn't on my radar but that is where we landed, that is where GOD wants us and under the care of Dr. Daniel Hoernschemeyer.  

When, Jeremy had his first surgery last August things didn't go as we had expected but through a difficult, stressful time I had peace.  I knew J was where he needed to be, that I never doubted, under the care of Dr. Dan.  When you see a Doctor clear hallways, hold elevator doors, stays with your son while they are doing an MRI, talks to you after, openly admits not only is he going to pray for your son's recovery but is asking his friends to pray for your son's recovery, and the day he sends you home the last thing he says, "I am going to see J through this" and he followed through with that statement.   The day we returned to see Dr. Dan on September 27, we had communicated the past 6 weeks, he knew J had recovered his motor skills and was walking.  I had emailed him pictures and sent videos.  To see the look on his face when he was walking down the hall and he seen Jeremy get up, shut the office door was priceless.  I named him J's Super-hero, Dr. Dan...... 

Dr. Dan had given it a great deal of thought and prayer to come up with a new plan.  J go in traction for 16 days to naturally relax and stretch his spine, then he would do the spinal fusion surgery.  The time during the traction, J was doing well, no neurological issues and Dr. Dan was hopeful that he would get some correction and especially in the lower to fix the leg length difference.  I don't need to re-create the events of a surgery that it didn't go well.  

They called me to tell me that Dr. Dan was going to come talk to me, took me into the room and I waited for what I thought was a long time.  Dr. Dan finally walked in and it wasn't the look I wanted to see, in fact it took him a while to even say anything.  You get to know physicians who care for your children and have your child's best interest in mind, I notice eyes and facial expressions.  The first words out of his mouth were something like, "this wasn't what I wanted for Jeremy, I'm sorry".  He said I'm sorry several times and recounted the events of the surgery.  I'm not saying he had, but he looked like he had cried before he came to talk to me and I noticed several times through out the conversation he would turn away and would be slow to speak.  I don't know that I have ever felt bad for a doctor, I felt bad for J, what he went through, what he was going through, what was yet to come, what I was going through emotionally, but I have to say I honestly felt bad for Dr. Dan.  I know it wasn't what he wanted for Jeremy, he had told me several times what his plan for Jeremy was.  This Dr. brought his kids by to visit J, he came by each day to check on J to see how things for going.  He wanted and wants what is best for Jeremy, truly and sincerely. 

I pray for Jeremy to recover his leg health, for me to have wisdom to get J what he needs, but I also lift Dr. Dan up in prayer as he deals with a surgery that didn't go as he would have liked, hoped or wanted for Jeremy the second time, I pray for him as he has to re-group, thoughts and come up with the next step for Jeremy. 

The question of why....

Most toddlers go through this, "why" phase, why is the sky blue? why do the birds sing?, why, mom? why dad?, why?  I often vision as much as Jeremy jabbers that he is often time saying that to me.   Today, is my season of why?, why does J have a sensitive spine? why surgery in August, he made a full recover, why are we going down the same path?  he did so well with halo traction, why didn't surgery go as we expected? why are we removing the halo? and why am I feeling the same way I did in August?  Why is J going to have to rebuild lost gross motor skills? will he be able to rebuild them this time?  will J walk again? be the mobile little boy that I am use to? that so many people say, wow he is fast, he must wear you out, yes he often times does but consider the alternative? Did I do something wrong? maybe I didn't pray enough? not seek God's guidance more?  Maybe sometimes things happen that we will understand better by and by  but for this time in our life, this season it's not meant to understand but trust God.

The halo was removed this morning.  We will be doing an MRI tomorrow.  They are lowering J's blood pressure medicine and he is almost down to 1 and the plan by tomorrow is to be off all.  We also today are trying to give him valium instead of morphine for pain, he's tolerated it fine.  He is drinking by mouth, had drank apple juice, milk, pedialyte so they will advance diet as tolerated. 

I must admit the removal of the halo, once again signals a bittersweet moment in our life, we are happy to see it gone, I know Jeremy is, but it once agains signal change, a season of change, that once again plans didn't go as we would have expected, hoped and wanted.

Prayer request: Pray that Jeremy continues to maintain his blood pressure, control pain with the oral mediciations, pray for leg health that he builts up them legs. 

Sunday, January 30, 2011

Life in PICU.....

Yesterday was just a fairly slow day, J was in recovery mode.  He would sleep off and on, it was a game to keep his pain under control and blood pressure from being too low.  The circulation in his legs is better today and they can feel his pulse, yesterday they had to use pulse finder.  He moves his toes when tickled or pinched but still no leg movement.  This morning he got a bath, and smelled so good, got his hair washed and baby lotion.  He is moving himself around the bed, and is more feisty.  They are in the process of weaning him off of his blood pressure meds and his blood pressure remains stable.  They are lowering one pain meds.  Dr. Dan came by this afternoon, showed me what he was speaking about the screw that was in the wrong place.  He wrote orders for PT to get him up, in his back brace and J tolerated sitting up for over 35 minutes, think he might have done longer so that was good and his BP was stable.  They put him back in bed and he literally passed out, he was exhausted.  Dr. Dan ordered an MRI for tomorrow and wants to compare it to the one we did last year.  J was given 3 pints of blood during surgery, which is lot but he's not had anymore and his blood work is looking good.  

Continue to pray for J to recovery, continue to maintain his blood pressure and for leg health to return and him start working them legs. 

Friday, January 28, 2011

J is J....

We all know that you can't go to a medical book and find a chapter titled, "Jeremy" or "Jeremy Ray" or "J".  You can read about hydrocephalus, A-corpus callosum, J's heart defect, FG syndrome.  One reason I keep his blog is to hopefully provide some hope for other families who have children with special needs, that like J write their own  book and provide some positive hope.  Though there are "up" days, there are also "down, frustrating" days and life offers us no guarantees for any of us.  It all works to the good of our those who love GOD and GOD who loves us.  My plan is to put these thoughts into a book, that can also provide to professionals what families like J deals with, the day to day of living in Jeremy world.  J is J and he has always not done things as we hoped, wanted or expected but then again he has exceeded many more expectations. 
I could almost copy the posting from back on August 6, 2010, for his anterior release with a few minor changes.  One thing I don't have to change is, the day didn't go as I expected, the hopes I had and the disappointments.  Jeremy, was taken back about 8am, they hooked up all the sensor-monitors and IV's.  Jeremy responded to traction well, better than I even imagined he would, like a champion, it never slowed him down and his spine was relaxing and stretching.  Dr. Dan was fairly optimistic that he would get some correction and truly wanted to get enough in the lower extremity to correct J's leg length difference.  I wanted that for J, to gain what height he could, not so J could be viewed by the world as normal because, the GOD who created this complex world, me, you, also created Jeremy.  The bible tells us we were created in his imagine, so by GOD's standards and J's mom standards J is normal.  Jeremy has a sensitive spine, that was determined at the last surgery but since he was tolerating the traction so well I was hopeful.  I could almost tell by the look on Dr. Dan's face and eyes, he was frustrated, things didn't go accordingly and I didn't want to hear what he said.  I wouldn't want to be in his shoes to have to tell a mom for the 2nd time, your child lost motor in his legs.  Dr. Dan actually got started later, he waited 45 minutes to decide if he was going to proceed.  The sensor-monitors started going off immediately, J had trouble with blood pressure, lost a great deal of blood.  They would return J to normal and the monitors would go back to normal.  Dr. Dan did get all the screws in place, he said that is the long part of the surgery and doing the rods takes about 2 hours.  I am in some ways re-living last August nightmare, my worse nightmare, praying over my son's PICU bed, talking to him, telling him mommy is here it will be OK as they work to stabilize him, get his pain meds and blood pressure normal, praying for his legs to get strong and hae emotional outburst and cry.  If he starts to regain good motor function to a standard of Dr. Dan, he will more than likely proceed with placing the rods next week while we are here, but J's spine will be fused the way it is, no correction.  The scoliosis still has to be stopped.  We could also be sent home, back brace, PT and see if and what motor function Jeremy returns and do rods later.  We will just have to wait and see, if we go home and come back then that is God's will and we will do what needs to be done for Jeremy.       

I'm not a parent in denial, I have been researching scoliosis when Jeremy was diagnosed at 3 years old.  I know the spine is a risky thing there are no guarantees but not doing anything is risky for J.  I think deep down I had hoped the chapter of "scoliosis" was going to be closed in our lives.  I don't know why it happened, nor am I understanding God's plan or even the reason, and that tonight I struggle with the whole day of events.  I am exhausted from spending 16 days in the hospital, Jeremy not sleeping, walking the floor for endless hours so J could walk around and play ball.  I am grateful that Jeremy survived the surgery.  I am grateful for our Super-hero, Dr. Dan, a doctor who truly has J's best interest in his mind and heart, a day that didn't go as he would have liked to see or expected but to be doctor enough to say, we aren't proceeding and stepped back, instead of having a "GOD" complex, and proceed just to get this done and over with. 

When we got to PICU, the hospital social worker showed up, child life specialist showed up when they had heard things hadn't went like we had hoped and sit with me until they brought Jeremy and got him set up.  The PICU nurses were walking by and saying, "I remember you and I took care of him the last time".  I remember most of them, they were all so awesome, nice.  It's funny several RT, transporter say, is this the master of disaster on floor 5 who I played ball with, apparently J played ball with more people than I know.  I am grateful for the ones who took the time to play with J.  I love Dr. Burney one of the PICU physician, he is awesome.  I gotta admit I could take a little less of some residents, when the one tonight came in and asked about Jeremy's history, does he have a syndrome?.  I said, "it's all in his paperwork in his file from August 6, 2010".  He admits he just hasn't taken the time to read it, and sometimes mom can add so much more to it.  Well this mom is tired of explaining and reinventing the life of J, and if you are wanting a drama production titled the life of J, I'm emotionally, physically drained and it's  not going to happen.  Dr. Edwards, the Pediatric Anesthesiologist, this was the first time I met him, had a great sense of humor in a tough situation, but he is good and let me tell you when he asked 5 times where is the morphine and who is getting the morphine, someone better answer I have it.

Surgery day...

Dr. Nelle, our resident came in this morning about 6am, we were already up, Jeremy woke up in a happy mood. Dr. Nelle marked his back.  Jeremy was in a good mood.  I've been trying to give him short explanation, that Dr. Dan will remove the halo today, and fix his back, he knew there was something going on and didn't want me to leave, which upset me. 

They took Jeremy down to the OR about 7am, and at 7:30am they took him back, they let me walk with him as far as I could.  The nurse just came and told me that they have given him the medicine, he is out and Dr. Dan is getting ready to start surgery.

I may not be able to update anymore today, but will try once he is out of surgery and back in PICU.   

Thursday, January 27, 2011

Tomorrow is "S" day.....

Tomorrow is surgery day, an event that was put in motion last August when I heard the words I could have lived the rest of my life without hearing, "Jeremy's spine has progressed rapidly and rotated inward, it's time to seek correction".  It started my research of scolliosis, not that I hadn't already, but also a mission of finding the physican to do this procedure.  My prayer to GOD was, "please heal Jeremy's spine without surgery, but if it's your will to heal with surgery intervention please help me to find that surgeon you have picked out".  GOD did just that and that is how we landed at The University of Missouri Children's Hospital under the care of Dr. Daniel Hoernschemeyer, aka Dr. Dan, J's super-hero.  I have been prepared for this day for a long time, back in August I was ready to close the chaper in our live, but God had other plans, I don't know why it happened like it did but I know God had a plan and a reason for us to go home, recover and come back.  Jeremy has responded so well to traction, again beyond my thoughts.  I sit in my room, here my son tracking down the hall at a fast speed in a walker, dragging 16 pounds and hear, "Hi, Jeremy" from lot of different voices, he is the master of diaster of the 5th floor of pediatrics. 

Wednesday, January 26, 2011

A few pictures...

I haven't posted any pictures since the second day, so here are a few of Jeremy in traction, walking with his walker....

We added some decorations to the traction walker....

J was watching over a crying baby, it was so adorable, he stopped when he heard the baby cry !!!!

A milestone....

Jeremy hit a milestone, we have been in the hospital for 15 days straight, his NICU stay at birth was only 11 days, heart surgery was 7 days, shunt infection was 12 days, kyphosis repair was 12 days but we are on Day #15.  Everything is going good, Jeremy is being quite the charmer, he of course loves attention from anyone, and everyone is so good with him.  He's made several children friends during his stay.  We had one family that brought tears to my eyes, they are leaving today and she said although she hated this hospital stay they were here with her daughter having migraines she said she is so glad that she got the opportunity to meet and hear about Jeremy.

Dr. Dan showed me the X-rays we took Monday, compared to the ones in his office and I could see somewhat a difference but he seems very pleased so I have found through the years with Jeremy if you have a physican who is doing what they are doing for the good of your child, they are happy you learn to be happy.  He is pleased with how natural and safe the traction is working.  We will at some point today talk surgery, although I can't think of any questions that I have at this time, he will also add a pound.  Friday, morning, January 28 is the surgery day approximately 8:30am Dr. Dan will start his surgery, he said it could take 6-7 hours it just depends on Jeremy, his spine and if he has to slow down.  I am excited that he feels that he will be able to get some correction, especially he plans to be able to get enough lower to fix Jeremy's leg length difference. 

Monday, January 24, 2011

Another beautiful day in Columbia....

We didn't get the snow they said we were going to get.  I went to Wal-Mart Saturday and my car was literally covered.  I think we have a chance of snow mid-week but Friday it's suppose to warm up to above freezing. 

Jeremy  had a good weekend, playful, he had his favorite nurse, Shelly, who let him sit at the computer while she charted and he was happy.  It was so cute when she came into the room he did his ornery little giggle.  We played, we even took a little nap sitting in the chair, he slept longer than I did.  This morning, Jeremy was laughing and playful when Dr. Dan came in and he said, "it is good to  hear you laughing J"  It's funny he calls him J.  We are up to 16 pounds, I guess he will add a pound a day til Friday.  We did X-rays this morning and still scheduled for surgery on Friday...

Saturday, January 22, 2011

Greetings from the beautiful Columbia, Missouri....

I realize I haven't posted in a few days, it's been a little crazy here.  Jeremy continues to tolerate the traction well, his spine is responding and his spinal cord is dong great.  We are up to 14 pounds and not sure if we are holding here or going to 15 pounds.  We did have a rough few days Wednesday and Thursday, with each increased pound Jeremy became more irritable so we changed his pain meds on Thursday which helped Jeremy.  Thursday was the worst day, Jeremy was in pain, didn't want to come back to the room, I had walked around the entire 5th floor with him, throwing the ball, got a little break and I was so exhausted.  I can't remember being that tired, so when he almost tipped over the wheelchair I had a meltdown.  Child life set with him and I went outside and walked and cried my eyes out.  I felt like a bad mom for not being more patient with Jeremy, when he was in pain and in a situation he didn't understand.  Once the pain meds were changed he was back to being himself.  Dr.Dan did the  CT scan on Thursday.  The plan is for Jeremy to have his spinal fusion surgery this Friday, January 28.  Dr. Dan feels that Jeremy's spine has responded to the traction and is relaxed and stretching. His other concern was the khyposis fusion we did this past summer, it was intended to go along with the spinal fusion that we all know didn't happen.  Dr. Dan felt with the last set of X-rays that it had set in and wouldn't be flexiable but with the CT scans he said it was flexiable so that is good news.  He feels that he can get some correction with J's spine not a 100% but I never expected that starting out.  He does plan to get the lower fixed so that it will fix J's leg length difference and he won't have to wear a shoe lift the rest of his life.  He is going to compare the one we did Thursday with the one we did last year and see how much of a difference.  We have been here for 11 days, everyone is awesome with J.  Jeremy is the ruler of the 5th floor pediatrics, made lots of new friends who really care about him. 

Wednesday, January 19, 2011

Progressing along

We are up to 12 pounds, Dr. Dan will add a pound a day and get up to about 15 pounds.  We did X-rays on Monday, there was some correction, and the kyphosis was relaxed so Dr. Dan was pleased with that but wants to see more.  We will repeat the CT scan we did last year at this time, Thursday or Friday.  Jeremy is tolerating the traction well, ruler of the 5th floor pediatrics.   We put him in the walker and off he goes, it doesn't slow him down, he takes his bouncy ball with him and will throw it and play ball with anyone who even looks his way.  He has made friends with a custodian, Herschel who is awesome with Jeremy, had him doing one of Jeremy's laughing so hard you think he's not going to breathe.  It was good to see that.  He is mostly his happy little self, but does get tired, frustrated but overall doing good. 

We are suppose to get about 5 inches of snow this evening and overnight, it will be pretty sight especially since I'm stuck up here.  I'll take pictures and post them. 

Sunday, January 16, 2011

Good Sunday Morning

Jeremy was asleep last night by 7:30pm, slept pretty good for him.   Yesterday was the first day Jeremy didn't have any pain medicine.  He is getting valium at bedtime to help him relax.  The resident came in this morning and added another pound so we are up to 10 pds of weights, he seems to be tolerating it quite well.  Kelsey will be in about 10am to take him for his walk, which he will be thrilled.  He got up about 8am, got his "off traction" morning break.  He ate biscuits w/ gravey, bowl of frosted shredded wheat and a banna for breakfast.  He is sitting in the chair, glacing through books having his quiet time. 

I am going to miss Sunday morning church at Sapulpa Bible Church, the worship service is always so spirtual and uplifting, I love the songs we sing to GOD.   Pastors Mike's sermons always challenge me to dig deep into my life. 

Saturday, January 15, 2011

Full force ahead....

We are living life from the 5th floor of the University of Missouri Children's Hospital, doing really well. 

Jeremy has been tolerating the traction well in my opinion, the walker got fixed up yesterday so he walked the halls for a couple of hours, he was exhausted when we got the room and about 8pm he was ready for bed.  He is also getting "traction" breaks, where we totally un-hook him from traction, he gets to go to the playroom and play with toys he can't while he is restrained to the traction.  This morning our amazing nurse, Shelly took him with her to the nurses station and he was early morning entertainment.  He is the ruler of the Pediatric floor and loves the attention.  Jeremy is getting well known in room 528, he is making friends and they all come by to see him.  We are also starting to see nurses we seen while Jeremy was here in August, they are all so excited at how well he is doing and to see him up.  He had been sleeping ok considering what he is going through, I sleep on the bed with him.  They watch him while I run downstairs to grab a bite to eat or take a break. 

Dr. Dan came by late yesterday evening to check out the walker and seemed fairly proud of how that turned out, but pleased with what it was doing for Jeremy.  Jeremy pretty much ignored him, he asked if they would still be friends.  He said he would come by Saturday and if it's ok would bring his little girl that way Jeremy could see some kids while he is here and he was taking her to a birthday party.  I thought that was so sweet for him to ask and to think about Jeremy, but then again that is why we are here he is not only a spine expert but a compassionate physican who has so much emptahy toward his patients and hasn't forgotten the "human" side of medicine. 

This morning we took a good stroll around the entire 5th floor with Kelsey the weekend therapist, who is awesome.  Dr. Dan was coming down the hall as J was coming out of his room and his eyes lit up and he says, "OH he looks good, got to take a picture"  he introduced his little girl to us, Jeremy wanted to hold her hand, she was really sweet with Jeremy.  Jeremy interacted with Dr. Dan.  We are up to 9lbs of weights.  We talked for a little while and got to see his little baby girl, he had both his girls with him.  He wants to do X-rays on Monday to see how things look and then repeat the CT scan we did last year to see how different things are. 

We are chilling out in the room, I think Jeremy is already tired.  He is sitting very quietly thumbing through books. 

Friday, January 14, 2011

Life at the hospital....

Everyone here at the University of Missouri Children's hospital is AWESOME, they are so "family" centered care and help Jeremy and always think of me.   J didn't want to sit up in the wheelchair much yesterday but tolerated laying in bed in traction.  We are up to 8 pounds, Dr. Dan started with 5 pounds to start, he added 2 yesterday and the resident added 1 more this morning.  Jeremy is tolerating it, but just wants to be up and moving around.  He is sitting in the chair now, doing good.  He slept really good, I just curled up in bed with him and we slept good.  His walker should be finished around noon so he can get up and walk around, which should help him to get out in the hall, go the playroom.  It's going good, he is being good sitting up now, but he's got 2 therapist giving him total attention.  

Entrance into Children's Hospital, TJ tiger the mascot...

Jeremy sleeping peacefully on Thursday morning


This is what we came came, clouds, snow and cold, cold, cold

A therapy dog came to visit Jeremy on Wednesday, he really liked that

Our new home for approx, 24 days....

This is what we left, Tuesday morning at 9am, cold, but sunny skies...

Wednesday, January 12, 2011

Our trip and Day #1.....

We left Sapulpa at 9am and was in Columbia, Missouri by a little after 3pm..  We made a quick stop in Joplin to grab a bite to eat on the road, in Lebandon to fill up the car.  The trip was mostly sunshine and clear roads the entire duration until we got to Jefferson City the clouds were upon us and the closer to Columbia it started to snow a little but nothing too bad.  We arrived at our motel, had food delivered and enjoyed a nice quiet evening.  

I gave Dr. Dan his picture frame with the picture, I think he really loved it.  He called since he wasn't coming back up this evening and thanked me again for the picture frame and said he already had it hanging up in his office. 

This morning, Dr. Dan put the halo back on Jeremy.  We are in room 528 at the University of Missouri Children's Hospital @ 404 Keene Street, Columbia, MO, 65201.  Jeremy is not thrilled by no means about the return of the halo.  We did have a few rough moments today, but I know he is mad because he can't get up and run around, he also has an IV and he hates it.  They are capping the IV and will take out in the morning, Dr. Dan doesn't feel he needs it.  J has eaten a grilled cheese sandwhich, tator tots, chocolate ice-cream, 2 cups of pudding and drinking a pedisure.  I also ordered him some chicken nuggets for later and he is eating on them.  He can have pain meds every 4 hours and then some valium to help him sleep.  He will get his ADHD meds in the morning as a typical day and Dr. Dan is working on getting a walker rigged up so Jeremy can be upright and walk, which is going to thrill Jeremy.   He wants him upright as much as possible so Jeremy has been sitting in the chair most of the afternoon and is happy to do so.  He has been ornery, wants to run around and pulls at the halo for attention. 

Monday, January 10, 2011

We leave tomorrow...

I can't believe that tomorrow is the day we leave for Columbia, Missouri for our 24 day stay at the resort....LOL.  We will actually be impatient at the University of Missouri, Women's & Children's Hospital, their new facility.  We will be under the care of our super-hero Dr. Daniel Hoernschemeyer.  Please pray for safe travel as we have got some snow and the area we are traveling to got more snow.  We are going to leave about 9am, we can travel during daylight hours with the sun, give rush hour traffic time to clear and road crews time to clear.  We won't actually make it to that area until approximately noon to 2pm.  We will take our time no rush. 

We have to be at the hospital at 7am on Wednesday, Jeremy will be taken back about 9:30am for the halo to be put back on his head, then he will be put in a room and I'm sure for Dr. Dan to hook the traction back up....

Sunday, January 9, 2011

A few pictures from our Pre-op trip to Columbia, MO...

The traveling crew, Granny, Johnathan and Jeremy.  Johnthan made a snow-man

The bridge into Jefferson City I love this bridge.

The finished, "Thank You" gift to Dr. Dan.  I thought it turned out good, Thanks to Melissa for fixing the picture, Holly for the idea. 

Friday, January 7, 2011


You have seen the dolls that talk and are chatty, well I live with the model, Jeremy-talks-a-lot, the "live" version.  This week he has been talking up a storm at home, he comes up to me in the evenings or in the mornings and just starts to jabber, I hear lot of "I want", "I did", "I", "I", "I".  I would love to slow him down to hear what he is actually trying to tell me.  It is so cute, and I love his sweet little voice. 

This picture was taken at school and sent to me, he went up to the Smart Board (which he loves), he would not allow any of the other students to come up to the board, pushed his friends away and just giggled.  I so do not know where he got the idea that he could take over a situation and be controlling....
Jeremy at school, he wouldn't let anyone else up to the Smart talk board, would push the other kids away and giggle.....

Tuesday, January 4, 2011

He only has scoliosis.....

I remember when I was in Jr. High, the school nurse lined up everyone and told us to bend over so she could run her hand over our spine. I honestly didn’t know what this was all about, until years later to find out they were checking us for scoliosis.  A common procedure still done today at schools.

Jeremy has congenial scoliosis, which means at birth. Jeremy was born with mild scoliosis, a bone-growth study, skeletal survey all revealed that.  We first started to notice progression shortly before he turned 2 years old and Jeremy was re-checked when he was almost 3 and progression was to a point we needed to do some intervention. Jeremy had low muscle tone, he was just starting to crawl when he was 2, starting to stand for short periods of time.  I researched all I could on scoliosis, but when Dr. Cyrus told me that day I was numb, lost for words.  We became familiar with the TSLO brace, aka scoliosis brace.  I remember when Jeremy started to wear the brace, we went out to eat and the guy who checked us out in a very loud, concerned, expressive voice, said, “what is wrong with that baby’s back”. I calmed myself because I really wanted to come across the counter and say, you know dude it’s none of your business so breathe. In a calm voice I said, “he only has scoliosis, it’s a curvature of the spine and he's fine".  

Jeremy started to stand upright when he was 3 and at the age of 5 started walking, which slowed down the progression.  The reality is, being born with scoliosis, the progression that already had taken place his spine was going to grow that way.  The growth spurt he hit last year it progressed rapidly and rotated inward.  It was also reality that some sort of surgical intervention was going to be required for Jeremy's spine.

I would be lying if I said, “ I’m fine with being admitted to the University of Missouri Children’s Hospital”. I know they are more than equipped to deal with Jeremy and Dr. Dan is the surgeon we need to follow, for that decision I am absolutely 200% sure of and have great peace. I am scared and have been having high anxiety moments that I normally do not. I’m scared for my son, I’m scared that his spine is not going to tolerate halo traction or produce the results needed. I don’t want to set down with Dr. Dan at anytime during our stay and have a heart-to-heart talk about a complex, risky procedure and I don’t want to hear the words from Dr. Dan that Jeremy is not responding as he hoped.  I have “up” and then “down” times and I work hard to not give into them down moments and turn it over to GOD, ask for peace about the entire situation. I truly get the point that no matter how much control I believe I have, it boils down to Lora: 0%, GOD: 100% control.  My GOD, my creator, Jeremy's GOD, Jeremy's creator.  He knows best and all. 

I think back to that statement I made to a cashier 8 years ago, It’s only scoliosis, a curvature of the spine and he’s fine. The word scoliosis has sure placed a great deal of grief, frustration, stress into our lives. I have visited many families this past year who their children, “just have scoliosis and they are fine”, they make it until they are teenagers before surgery is required and some never require surgery. For, Jeremy, he doesn’t just have scoliosis, he comes with complex issues that don’t always produce the results that I would personally prefer. You can’t get a medical book or search on-line and find a chapter, “Jeremy Ray Roberts” because Jeremy continues to write his own book, word by word, sentence by sentence, chapter by chapter.