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. 

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...

 

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. 

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....

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. 

Jeremy-talk-a-lot...

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.....

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.