Sunday, February 27, 2011

Our days.....

I was talking to mom Friday night and although it sure feels like we have been home for a long time, the fact is it's only been 2 weeks.  Jeremy just completed his first full week of school, had a full schedule and tolerated it like Jeremy does.  We seen our amazing eye Dr on Monday, Dr. Groves and Jeremy's eyes have remained the same, although he has nystagiusm he always has but it shows up when he is physically tired so we seen it back in August and we are seeing it again.  Jeremy had his PT evaluation on Wednesday with Pam and did very well.  I struggle with times that I feel sorry for myself that Jeremy isn't walking or urinating on his own, times I whine about how unfair this is, times I have to make myself live life, times that I am up and everything is fine.  I cry out to GOD through the day and at night to heal Jeremy's spine, make it healthy, breathe life back into his legs and wake up his bladder to start working.  I was hoping for a faster recovery but when I look back and what J was doing the day we came home.  Jeremy like always has made HUGE progress and like always Jeremy is Jeremy and doing it in his time frame.  Jeremy is wanting to sit up more, he tried yesterday to put his knees under him, he is using his left foot to push him as he is laying down so Jeremy gains each day and makes progress.  Jeremy also has this very sweet attitude, he crinkles up his nose, smiles and jabbers.   

J spent some time with his dad yesterday so that gave me some alone time, I got a spa pedicure, bought a couple of new shirts.  This morning we got up and went to church, it was my Sunday in the nursery so I got to play with a 2 year old and Jeremy went to his class with Diana and she said he was good.  We came home cleaned house.  Jeremy is sitting here listening to his internet radio station.  I am going to start back on my treadmill for 30 minutes to get back into a routine.  I was doing good on my diet and exercise before we left and was proud that I maintained my weight loss during our 31 day hospital stay.  It is now time to get back on that diet and exercise, to get back my energy and re-focus so I can work on loosing more weight. 

Wednesday, February 23, 2011

To everything....

I have been thinking of seasons, I think because we are getting close to spring which is my FAVORITE  season of the year but also of what is going on in our lives so that made me reflect on, Ecclesiastes 3:1 and 3:4, "To everything there is a season, a time to every purpose under the heaven" and "a time to weep, a time to laugh, a time to mourn and a time to dance".    I know personally this has been a season that I have mourned for Jeremy but think this is more for me, Jeremy has changed, I am praying that it's for a season.  I have wept for my son for what he has endured, what he has to overcome and what he has to endure in the future.  I have also laughed for Jeremy, I have danced for Jeremy with each step of progress he makes.  You have to be happy around Jeremy, you can't help it because he is happy, always smiles and does goofy things to get you to laugh.  Then when you start laughing it makes Jeremy laugh even harder to the point it is contagious.  I also think the bible tells us to come to Jesus as children, so J continues to teach me.         

We are still in the Winter seasons, I join the vast array of the earth's population and say, I'm ready for winter to leave, I must admit winter is my least favorite season of all.   It's the coldest season, days are shortest and nights are longest.  This is a time of hibernation for some creatures, they are resting up and getting ready to start living again.  There have been moments here lately that it's been dark and lonely in Jeremy world.  There have been moments that I wouldn't mind hibernating through this season myself and wake up to spring.  That is not what God would have me to do.  Jeremy is doing good, he is making slow, steady progress.  I think his body is in winter mode, hoping for his bladder and muscles to wake up.  He is starting to build his trunk control, sitting up with assistance but starting to balance himself more, he is pushing back when they stand him, he is moving his legs and started to move them against gravity some, he started today roll from side to side and used his left leg to kick that off.
Spring is the transition between winter and summer, spring and "springtime" refers to the season and broadly of ideas of rebirth, renewal and growth.  I mentioned I LOVE spring, the days start to get longer, it starts to get warmer, flowers are blooming, trees are budding, I get to start wearing flip-flops, carpi's, t-shirts and the beauty of God's world is coming back to life.  Jeremy is rebuilding lost skills and it's been a time of growth for me, to step back and accept that God has a plan, he is in control and I need to wait on him.  That is not an easy task for me being OCD, I love making list, I love crossing things off my list, I love to plan, I like to see my plans work and my inner being thrives on this.  This is a growth process for me. 

Summer is between spring and autumn, the warmest of the 4 seasons and the days are longer and nights are shorter.   I like summer, the temperatures can be hot, but you get to do more outside.  Things are in full bloom by the time summer hits, green grass, pretty flowers, big full green trees and even prettier canvas of God's great big creation. 

Autumn (Fall) marks the transition from summer into winter, the season where everything is winding down.  I admit Autumn is my next FAVORITE season simply because the temperatures are cooling down, mornings are cooler, days are just perfect, the sun is not has hot and the colors are amazing as they turn the opposite to go into their winters sleep.
OT was working with Jeremy, they got him up to stand and he was pushing back with his legs.  This was him resting after supporting himself....

Sunday, February 20, 2011

Trying to make sense...

It was 9 days ago we were discharged from the University of Missouri Children's hospital after our 31 day impatient stay and we began our 6 hour journey back to our home in Oklahoma but more so another journey of a season of change.  It has been a week of adjustments for us, I had to adjust to going back to work, using my brain, I was able to help several families find resources, Jeremy adjusted to going back to school, we adjusted to meeting a new doctor, we are adjusting to the fact that Jeremy isn't mobile, we are adjusting to the fact that Jeremy can't urinate on his own, I'm making adjustments to the fact that Jeremy is different than when we left home on January 11.  I pray fervently that this is just a season and had so hoped that this spine surgery would be different, he could tolerate it, but this one proved to be tougher and affected his bladder.

These are the moments that I struggle for this to make sense, seek deep down, pour my heart out to GOD, why does it seem like Jeremy has to keep overcoming so many obstacles time after time?  He has always overcame obstacles and came back even stronger but it doesn't seem fair.  I never since becoming J's mom prayed for GOD to give me what the world viewed him as a "normal" child, I love Jeremy for who he is, he teaches me daily, I have grown in so many ways from being his mom and I LOVE my son.  God created him.  J worked so hard to walk, he didn't walk until he was 5 years old and last summer he had to learn to walk all over again.  I love him having that freedom and didn't want his walking to be taken away from him.      

Jeremy and I went back to church today for the first time in 6 weeks and it was nice to worship GOD in music and sit under the preaching of God's word.  It didn't seem like our home church was 6 hours away when we were impatient, we were flooded with cards, pictures of the kids in Sunday school class, text, emails, facebook post and messages on my mobile phone.  I always felt close to them.  Today was no different, we were greeted with many people who love God and love Jeremy and I.  They pray faithfully for him, me and Dr. Dan.  J was given a, "Welcome Home" poster from the younger children Sunday school class and the kids all came by to say, "hi Jeremy".  Jeremy just smiled.  I was touched that the church gave me check to help with our expenses.

I've struggled with the, did I not pray enough? was my faith not strong enough? was I not seeking God?  was perhaps making the decision to ask Jeremy's dad to leave the wrong decision?   I don't know how people who don't have GOD in their life makes it, the one thing I have is hope in GOD.  If it proves that J isn't going to walk, I just have to trust God, if it proves that his bladder won't work, I just have to trust God.  The message out of Isaiah 53, "He was despised and forsaken of men, a man of sorrows and acquainted with grief; and like one from whom men hide their face he was despised, and we did not esteem him". 

Wednesday, February 16, 2011

A new day.....

We have just spent most of this week trying to get back to living our life here in Oklahoma.  The weather is beyond words AWESOME, spring like and I am so loving this.  In the mornings outside the bathroom window I can hear the birds.  I hope for an early spring.   

J had his appointment with Dr. Steven Confer, the Pediatric Urologist, our newest physican.  He had a nice, young nurse with long hair who gave Jeremy lot of attention so he was happy with that.  Dr. Confer wanted to remove the cathear, less chance of infection, Jeremy was starting to mess with it and he wanted to give Jeremy a chance to start urinating on his own.  This means until J starts to urinate on his own I must straight cath him 3 times a day, even if he does urinate on his own to make sure he empties his bladder.  This gives Jeremy some freedom away from the hose and bag to carry around.  I measure and document it each time I cath him.  We go back in 3 weeks to see Dr. Confer unless something comes up between then.  If this don't work he can put the cathear back in.   This will be a routine we will have to adapt.  They gave me a lesson in doing this in the office, I watched them do it several times at the hospital and feel comfortable.  Our nurse will be at the house this evening so she can observe to make sure I'm doing it correctly.  Dr. Confer's nurse gave me her direct line and said call anytime.  He said Jeremy should drain about 300 cc. 

The big day, J started back to school after his appointment.  We got there about 11:30 just in time for him to eat lunch in the cafeteria and I know he is going to enjoy being out of the house and off the couch.  The kids have all been asking about him so he will get plenty of attention with them coming up to say, "hi Jeremy".  His teacher and para were happy to see him.  He was all smiles and happy, but I'm sure will be exhausted when he gets home.  The PT is going to evaulate him today, his para said he laid on the floor for a while but was up working.  The stimulation is going to be good for him to push him.  A new day tomorrow he starts back at morning latch-key, so this will be his first full day since January 10.  We will have the weekend to rest up.

Sunday, February 13, 2011

What's next...

I've been asked what is next?  We are waiting on Jeremy.  Dr. Dan would like to bring him back in 2-3 weeks to place the rods but he wants to give Jeremy time for his legs to wake up and him start using them.  I will be communicating with Dr. Dan about J's progress.  If we don't get much progress, Dr. Dan said 4-6 weeks he would want to see J back in the clinic and go from there.  We will follow up with a Pediatric Urologist here in Tulsa about the bladder. 

It has been a nice weekend, the sun has been shining, it's been 52 and the snow is starting to melt, I can actually see my yard.  J had a good day, he got up about 10am but as stayed awake all day, he tolerated a road trip out to my parents, where we celebrated my dad's 70th birthday.  I think J was happy to see so many faces he's not seen in a while, his cousins. 

I plan for him to go back to school Monday and Tuesday for 1/2 days, I think it will be good for him to see his friends, start doing some work, and just get back to a routine.  If he tolerates it well, then Wednesday I will send him for a full day. 

Saturday, February 12, 2011

J back in recovery mode....

J slept fairly good last night and woke up in a GREAT mood.  He ate 2 bowls of oatmeal and drank a can of pedisure for breakfast.  J's dad came up to spend time with him.  I gave J all his medicine, gave directions and then went to run some catch up errands and boy do I mean run it was literally run from one place to another.  I left at 11am and returned home at 3:30pm.  It was to the bank to deposit some expense checks, get taxes done, take supplies over & coordinate Tulsa Sibshops and then back to town to get groceries.  I am fortunate to have the 2 facilitators that run the Sibshops age group 9-14, I didn't have to stay.  I ordered a pizza picked it up on the way home and when I walked in J woke up.  He ate 2 1/2 pieces.  He laid on the couch with his blanket, listening to his 80's music and I sit on the floor beside him and was able to get my checkbook balanced.  I am super-de-duper excited because me being an Obsessive compulsive disorder type of person, I love making list, it bothers me if my checkbook is not balanced and I LOVE when my list are completed.

J is pretty much in recovery mode so I am letting him lay on the couch and catch up.  I know his last surgery he pretty well slept for days.  I did get him up this evening, put on his back brace, got him in his stroller and took him to his room to do some of his therapy.  He got his evening medicine and is now back on the couch asleep.  Tomorrow, my sister planned my dad's 70th birthday party at 1pm, so we are going to sleep in and then go out there for the celebration for a bit.  I am excited to get up and go to work Monday, start re-adjusting back to life.  I will see how J is doing but think we will try 1/2 day on Monday and Tuesday, see how he does and then Wed try a full day.

Prayer Request:  J's bladder to rest during the time he has the catahear and then be able to wake up and work.  Pray for J as he recovers so that he will start to build his muscles and get his lower extermity motivation back.  Pray for Dr. Dan, as he will have to look at what to do in the future and when. 

Friday, February 11, 2011

Discharge day...Back in Oklahoma...

Well today after being at the University of Missouri Children's Hospital in Columbia under the care of our awesome super-hero, Dr. Dan for 31 days, we said good-bye and was discharged.  Our 2 residents came in, Dr. Anz who we have been seeing since we were there, he was super-nice and told me, "you got a great boy there", Dr. Gillizi just came on board, we haven't built a relationship.  They got what prescriptions we would need to return home.  Dr. Dan came by early on his way to his spine case, we discussed the all the discharge, what he needed from me back here.  Then OMG, Jeremy had tons of visitors to see him off.   Kelsey, PT who J loved to see come into the room, he loved playing with her and he loved her hair so she came by and got 1 more play time in.  Then our PT, Caitlyn and Sarah, who worked so hard with him and he loved them.  Social worker Lauren, who came by each day also to play, J loved playing with her and he also loved Lauren's hair.  Amber, social work got all of our paperwork lined out, she commented that she gets all the business side of the visit, and I told her how much I appreciated all her hard work for me.  Then,  Corrine, Child life specialist who J loved to play with and see her coming, she had to come get a playtime in.  We had Shelley as a nurse and J really liked her, she had taken care of him most the time we were there.  Then as we got ready to leave the nurses were all telling him by.  2 of the janitors came by, Herschel who always took the time to play with J had to come see him.  The experience with all the staff was amazing, they were so super-nice to Jeremy, helped me out and was so supportive.  I was tearing up as we left, it was hard to say good-bye and leave. 

We got on the road about 10:30 and arrived safety at home around 4:30pm.  J tolerated the trip so well, was in a good mood, slept off and on but it wore him out, I laid him on the couch when we got home and he hasn't moved, he just passed out.  I was able to go to the post office to pick up 31 days worth of mail they were holding for me.  I had a little trouble getting the prescriptions filled, but finally got that task done.  My dad met us at the house to pick up my mom, so we got everything unloaded, and let me tell you that stuff multiplied, my trunk was full.  I have got everything in it's place, laundry started.  J's dad came by to visit, and I was able to go run some errands.  I have to run over to Tulsa tomorrow, it's our Tulsa Sibshops for age group 9-14, so I have to take roll, get the facilitator forms signed, drop off the bucket.  I am then going to buy groceries, the fridge is empty then home to relax.   

Thursday, February 10, 2011

Slow day...

Jeremy woke up in a really good mood and we never could get him to urinate on his own, I admit I'm frustrated about this but it is what it is.  They did a straight cath last night and emptied his bladder but it was full this morning with no sign he was going on his own.  We don't want to cause damage so it's not something you can wait on.  I was uncomfortable with the resident's plan, the nurse put in the cathear, and follow up with an urologist in our area in 2 weeks.  When the nurse in PICU tried to cath Jeremy she couldn't get it and we ended up calling urology up anyway plus I didn't feel comfortable leaving it 2 weeks with no guidance.  I requested that the nurse get a consultation to get an urologist up here to install it, answer my concerns and she agreed.  The urologist came in and felt putting in the cathear, going home and following up with the Pediatric Urologist in our area.  I feel that is a feasible plan.  They put him on bactrim for 3 days to help prevent any infection.   This was Dr. Dan's plan for Jeremy to go home.  I am working on getting an appointment with the Pediatric Urologist in Tulsa.  My pediatrician has got home  health coming on Monday so they can also check out the cathear. 

Jeremy worked hard for PT, she got him to stand, provided resistance, got him down on the mat on his hands and knees.  OT is working with him now.  The plan is still to be discharged tomorrow, not sure of the time, specifics, etc.   

Wednesday, February 9, 2011

We are back on the floor....

Our resident, Dr. Anz alway comes in about 7-7:30am but it was about 9:20am and I asked our nurse have you heard from the Ortho team, she said no and down the hall he came.  He got closer to me and I said, "what is the deal, you decided to sleep in this morning?"  I apologized later told him I was just kidding, not sure he knew what to think.  Dr. Dan came up right before noon to check on Jeremy, see how things were going, discuss some plans.  He is so patient as I'm sure many days I ask the same questions over and over as I try to understand. 

It was an exciting day.  Jeremy is back on the floor and he enjoyed the ride to a different part of the hospital but I think he thought we were going home.  If he continues as is, we will get discharged to head home on Friday, which will be our 31st day here an entire month which is hard to believe.  I will miss the place and people. you get accustomed to hospital living, seeing the same people day after day, we have made so many new friends here in Columbia, Missouri and they all care so much about Jeremy so it would only be natural to miss them.  I know next week I will find myself, wondering, what are they doing.  I am ready to return to work, just hope I can remember how to do my job.  I think getting J home to some familar surrondings, return to school is going to help his recovery.      

J done well with PT, they got him to move his legs on a sliding board, he's moving them a little more, when she got him to stand he didn't bear any weight but tolerated it longer.  He has been rolling from side to side in the bed, pulling up fairly high on the bed.  J has several visitors throughout the day, they were all excited to see him and didn't know that so many had checked on him while he was in the PICU.  We got our same night nurse we had many nights here, so she is familar with him. 

If you want to see pictures, currently you will have to send me a friend request on facebook because I take most of them with my phone and post to facebook, I then have to save them to J's second surgery file and download to the blog, I just haven't had time.  I plan to get some updated to his blog in the upcoming days/week.    

Today, Jeremy's new friend David, his mom Julie brought us lunch and visited.  Julie also made me a beautiful necklace.  J enjoyed David, laughed at him.

This go around being in Columbia, I have gotten to visit with the mom who told me about Dr. Dan.  Aletha, we had been visiting on facebook, emails, phone for over a year.  She got to come up while Jeremy was in traction to see the master of disaster, brought Jeremy some neat toys, chocolate/peanut butter, she came up the day of surgery, brought me lunch and sit with me until they got J back into his PICU room so she was there for me to cry on her shoulder about what happened, then she came back up on that Monday to visit.  Last friday, I took a trip to Booneville, about 20 miles from  Columbia, and she cut my hair which I needed it so bad, and appreciated it and then we went to lunch.  It was nice to finally get to get to know Aleatha and put a person with all of our visits.  

I was able to make a personal connection with another person I've talked with but never met, Jackie who has helped give me a eye here in Columbia. 

Tonight, the world's best and our favorite resident, Dr. Daniel Robertson stopped back by to check on Jeremy and we visited for a while.  He said he wanted to stop by before we headed back to Oklahoma.  It's always nice to talk to him since he knows Jeremy being involved in the 1st surgery.  I've grown to trust and respect his opinion and can talk very openly with him, like Dr. Dan. 

The plan tomorrow is like today, therapy, get J to pee on his own, continue to do as he is.  I will go fuel up the car, find a car wash to run my car through to wash off some of the sand/salt that has settled on my car, buy some cookies/cupcakes for the Ped's floor staff, therapy staff.  I did the PICU staff on Monday. 

Tuesday, February 8, 2011

The world's best and our favorite resident, Dr. Daniel Robertson...

Late yesterday evening, we got a surprise, Dr. Daniel S. Robertson came by to check on J on his way home.  I really wanted him to see J while he was tearing up the floor with his walker and get a new picture of them together because the last time he seen J was pretty much in this situation.   I told him, there is the world's best and our favorite resident.  He had been by to check on J while he was in the PICU but I guess I was gone.  He said he heard about J and the walker.  I showed him some of the pictures I had taken of J in the famous, "halo traction walker", he said he hadn't seen the walker but could tell he was moving.  He did say he had a hand in re-creating the traction wheelchair since he created it the first time, he said there were lots of emails about that wheelchair. 

What is so special about this resident?  Dr. Robertson assisted Dr. Dan in the anterior spinal fusion, so he seen J go through his first tough spine surgery, he was there from beginning and discharged us.  Dr. Robertson is such a polite, respectful physician and one who in my opinion has mastered the family centered care early into his residency.  He had the tough job of coming in later the day of surgery, a surgery day that rocked my world to basically tell me, "you are going to be living one of our worse nightmares".  How do you tell a mom this possibility? a mom who was there by herself, praying over her son's PICU bed, as they work to stabilize him and his blood pressure.  I mean honestly how many ways are there?  the way Dr. Robertson broke the news, soft-spoken, polite and full of empathy, "we are concerned with the lack of J's leg movement and we are going to do an MRI to check for a spinal cord injury".  He stood there with me for several minutes, although I didn't have too many questions he answered the ones I had and then Dr. Dan came in.  I didn't know Dr. Robertson existed up to that point, but he did make a somewhat scary situation not seem so scary.  He came by each morning to check on J, it was always funny I would wake up and he would be standing there and never spoke until I woke up and spoke to him. 
We discussed what the future plan was for J, to go home, rebuild and go from there.  I was excited to find that he rotates back in with Dr. Dan in March/April so we should be back and he will be our resident.  It was nice to catch up with him, he had commented that J recovered fast the last time and he will do great this time, he wasn't giving me false hope but it was a reassurance and I occasionally need them.  J had his I-phone going to the 80's and he says, "J I figured you to be an 80's type of guy".  He said he would come back by and hang out with J.  I asked if he had saw his picture with J on Dr. Dan's web and he said, "he had and was honored, to bad you didn't have a better resident".  I told him we had the World's best and our favorite...

Monday, February 7, 2011

What doesn't kill us..... (or) if GOD brings us to it....

"makes us stronger" I don't believe it because if we are still alive we can also be weaker individuals as a result of what we are enduring in our life, plus we are weak by nature thus are need for GOD in our life.  We can't do it without GOD although some think they can, some try and some end up stepping into eternity thinking they did it on their own.  

"he will see you through it" that one I like.  That doesn't mean there will not be some hurt, aggravation, frustration, disappointments or require that I live life different than what I'm use to.  GOD doesn't ever say, we are going to be healthy, wealthy or happy all the time, that he will be with us.  I admit since August 5, 2010 and before, I have hurt, been hurt, been agrievated, been disappointed and even had some life changes that I wasn't expecting but one constant reminder in my life is GOD is there, I choose to keep him there, I know that I am weak and can't do it on my own.  I have not always handled things well, threw my fits or argued.  I think of me like the lump of clay, and GOD is the potter.  The potter when finished makes a beautiful masterpiece, the end result is beautiful and we are working toward that. The lump of clay, pound it, maniuplate it, put in fire, possibly pound more, more fire, pound, fire, pound, fire and who knows how long that process takes, some pieces take longer as some lives take longer. 

I can tell you my OCD is kicking in overtime, I need to be planning, involved, going to meetings, doing something constructive and feel like a lump of clay sittingh here.  I am trying to adapt to this season, for whatever reason in our lives. 

Removal of 2 screws...

On January 28, Dr. Dan got all the hardware installed (screws) before he had to stop the surgery.   J has about 20 in his back.  When he did the CT scan there was 1 screw he wasn't happy with the placement.    He was waiting to see if he was going to place the rods and do the fusion while we were still here, but since the plan is to go home to rebuild lost motor skills, he felt uncomfortable, he said, "he would never forgive himself if something happened".  He had planned to take J back to the OR today, to remove that 1 screw but last night when he was looking at the CT scan he said there was another one in the same area, it would be the same incision so he was going to remove it as well.  Jeremy did well during the procedure, he was out less than 30 minutes, maintained good blood pressure, little loss of blood.  Jeremy will return to the PICU for the day, his diet will resume as normal, he will have PT get him up, if he's tolerating it, then tomorrow we will go out to the floor.  He is going to have the nurses to clap off the cathear and give him bladder time to contract and then try to remove tomorrow.

Prayer request::  Pray that the cathear can be removed tomorrow and Jeremy can pee on his own.  Pray for leg health, for him to start building back them muscles and moving them legs.  The sooner the rods can be placed the better, since the incision will still be easy to open and the less time he has him on the table the better in his eyes.  Continue to pray for Dr. Dan, as he starts to make future plans for J, we discussed several options, nothing set in stone, he leans on the side of caution when it comes to J and that is why I respect and trust him with Jeremy, I told him, "if you don't know it's ok to tell me you don't know", he said, "OK, I don't know for sure".  I said OK good enough.  My little man has returned to his room.....

Sunday, February 6, 2011

An AWESOME, "J" Day.....

It has been a GREAT Jeremy day, he wanted to get up and sit in the chair and sit there most the morning.  PT got him to stand up out of the chair twice, he didn't do any weight bearing but he tolerated it.  He has been flirting all day with his nurse Elizabeth, he really liks her.  He has been giggling, laughing and he even was smiling at Dr. Dan when he came by.  He will take Jeremy back about 7:30am to remove the screw doesn't think it will take a long time, then we will return to the PICU for Jeremy to recover.  He said J would probably go to the floor on Tuesday, with the possibility of going home Thursday but more reality on Friday, which I would take either one.  I heard it's suppose to be 60 degrees on Saturday at home, so that would be great.  He will remove the cathear on Tuesday in hopes that Jeremy can start peeing on his own.  I think the last week was due to his GI tract not working, but he's been having regular bowel movements.  Dr. Dan will visit with Dr. Cyrus Tuesday to recap the surgery, discharge and future plans for Jeremy. 

Sylvia with Pascale's Pals and camera man came by today and we visited for quit some time.  This family took a tough, emotional time and turned it in to help others, which as Christians we are calld to do.  They brought Jeremy this AWESOME new CD player, that swivels, 2 new CD's.  I was touched with all that they went through with their daughter, that my son's story brought a tear to her eye.  MUC is fortunate to have them here and to do so much for the families.  I told her I was touched that an organization would do so much for my son, that meant so much being 6 hours away from home, no family, no church family but for them to take Jeremy and do so much for him touched me.  They video taped me and Jeremy, will play at their annual Gala on March 11 for their fundraiser.  I told her there is a chance we might be here during that time, if so I would love to attend the Gala and she said I could sit with them.  I might have to discuss with Dr. Dan the possibility of when he thinks he's going to bring us back up, if that could be a possible date.  I would really like to attend, I may even have to make it my "weekend" away and come back for it. 

Prayer Request:  Pray for Jeremy to maintain his blood pressure during the removal of the screw, and that he can get the cathear removed on Tuesday.  Pray for Jeremy's leg health as he works to rebuild muscles.  Continue to pray for Dr. Dan as he sends us home and decides when to do the rod placement and spinal fusion.   

Saturday, February 5, 2011

Here is day #25.

We are on day #25 of living life in the hospital.  Jeremy is doing good, blood pressure is stable, he is off all fluids, eating and drinking on his own, pulling off his leads so he is being ornery.  We left the cathear in, because he would need it again on Monday.  I got up this morning and looked over at Jeremy's bed and I could see him wiggling his toes on his own, he still isn't moving his legs unless he is tickled or prompted, he is about the same with PT he is trying to push up on his legs, which is good.  He will need to rebuild muscles.  I'm glad that Dr. Dan didn't leave him laying in bed and got him up so quickly.  Jeremy has been sitting up in the chair all morning and into the afternoon, he is laughing, interacting, flirting with everyone that comes in.  I am restless here, especially this long and the fact I know we are coming back for the rod placement and fusion.  I'm ready to go home, be at home, let J recover at home and school.  I need to get back to work and utilize my brain, I miss OG&E, my co-workers and my work.  I am blessed beyond words with my job, they have all been so supportive all the way up to management.  I need to be dispatching orders, scheduling work, telling the guys what they are going to be doing, working in CADS and SAP software.   

Pray for J's leg health, pray for him as Dr. Dan removes that 1 screw on Monday, for Jeremy to maintain his blood pressure, no blood loss and for Dr. Dan. 

Friday, February 4, 2011

Pascale's Pals....

There is an organization here in Columbia, Missouri, Pascale's Pals, there daughter was diagnosed with cancer years ago and they know what it was like for children and families to live at the hospital so they give children a basket.  They are a blessing to the Univeristy of Missouri Children's Hospital, they provided flat screen TV for each room, on the Pediatric floor they provided Wi's for each room.  I know when we were here in August, they provided meal vouchers for families.  Our Social worker, Lauren, asked me what Jeremy would like so we came up with a colored Nook, the electronic book, they brought up his basket on Thursday, he got a Nook, $25 Barnes and noble gift card where I can download J some books.  He got a baseball cap from Nascar drive #60, Carl Edwards of the Ameriquest car who is a local Columbia boy.  He got a boy study bible, several movies, journel.  I had trouble downloading the pictures so will try again later tonight or tomorrow....

I sent the organization an email telling them how much we appreciated receiving the basket, Jeremy being so far away from home as made us feel like we belong here.  They asked if they could come up to video me, telling them what it meant for J to get the basket and Jeremy, I told her anything I can do to help, it's a great organization.  They do a yearly gala fundraiser for their organizations, so they will play the video in trying to get people to vote on baskets....

Jeremy with his basket from Pascale's Pals

Jeremy tearing into the basket

Jeremy was impressed with his journal

J with his hat from #60, Ameriquest driver- Carl Edwards

Opening up the Nook, what a neat gift for Jeremy

J looking at the movie he received

Thursday, February 3, 2011

Above all......

Yesterday, J's nurse (Elizabeth) was sweet enough to give Jeremy her I-phone while she was trying to get his Cather back in.  She had this free download Pandora, it's an Internet radio station, AWESOME.  Her station was set to Journey, so it plays songs similar to that group.  I confess I set J's up to Journey, I was trying to get her phone back.         

Last night looked to be a rough night, J was tossing, turning, not sleeping, he's been occasionally throwing in an extra heart beat, they were setting up the EKG, his blood pressure was not being stable and there was the chance he was going back on the BP drip.  I was extremely frustrated, and like I've done so many times in J's life, cried out to GOD to make this alright for J.  I took the phone and changed it to Michael W. Smith, who is my FAV christian worship singer.  Once I got it set, the very first song that played is one of my favorite worship songs, "Above all", if you know the song, "above all powers, above all kings, above all nature, above all created things, above all wisdom, and all the ways of man, you were here before the world began, above all wonders the world has ever known, there's no way to measure what your worth, crucified, laid behind the stone, you lived to die, rejected and alone, like a rose, you were trampled to the ground,, you took the fall and thought of me, above all". Once again, GOD has used my 11 1/2 year old son who has special needs in a tough, emotional situation to teach me a lesson.  I honestly think that if Dr. Dan had proceeded in August, that J would have had perment damage and I think had he proceeded this past Friday, that Jeremy would not have survived the surgery and I am so thankful for Dr. Dan who knew when to say I'm not going on, even if it means he has to tell me you are coming back to Columbia.  GOD knows J needed this in 3 surgeries, he knows, he is above all. 

The thought hit me really hard like it normally because I am hard-headed.  Lora, open your eyes, this is above you, this isn't about you, this isn't about J, this is about the one who was here before the world began, the one who knows more than any created thing, he is above all wisdom because he is all wisdom, it's about the one that took the fall, who was rejected by a world who was afraid of him, who was trampled like a rose,who was laid behind a stone, who lived to die for me, J and the entire world, he took the fall and he thought of me above all.  He thought of me above all, WOW, THANK YOU GOD for suffering for me, for J and for the world, this thought gives me freedom, we can accept him into my heart, have faith, live for him and maybe not always understand why things happen the way they do, but have the faith that GOD has a plan, purpose and it's all about the moment that I, you, J step into eternity and you have accepted him into your life, you trusted him.  GOD welcomes you into the place he has prepared for his people, where J will not have anymore surgeries, I won't stand over my son's hospital bed anymore, crying out to GOD to heal him and like today listening to that worship music, we will worship this one who thought of us ABOVE ALL.

Wednesday, February 2, 2011

We are on Day # 22

J has had a good day, he is off all BP meds since noon and has maintained a stable blood pressure, he got the NG tube out, is taking all meds and food by mouth.  They removed the Cather but bless his heart they are having to put it back in, he's not peeing, is really constipated so they gave him some meds and an enema that helped him out some.  His little belly is distended pretty good so I know this will help the pressure.  Dr. Wankum, tickled his toes this morning, and he flexed his calf and upper thigh muscles, he also tried to push up on his legs, it was a similar situation with the OT who got him up about 1:30.  It's been a good day.  We will get the MRI done tomorrow. 

So, what is Day 22 like in a hospital, it's been a long time.  I can say, I've saved lots of money being in here, I filled up my car in Lebandon, MO on January 11 and I still have a 1/2 of tank of gas, I think that happened like never.  I did want to get out of the hospital but this town has been somewhat shut down, pretty much what is going on in Okie land.  The word is the roads are getting clear so I figure by tomorrow I can get out of here for a bit. 

I spoke to Dr. Anz our resident earlier and he said if he could dig out of his driveway he would come in but it would be later, same with Dr. Dan and I've not heard from either.  If I would be guess-estimating our plan, is the screw will be removed on Monday and by Wednesday we will probably be released.  We already have our 6 week follow-up but I don't know if Dr. Dan will want to see him sooner or about the rod placement. 

Tuesday, February 1, 2011

Happy Jeremy day....

It has been a happy Jeremy day.  We didn't do the MRI due to J's blood pressure, Dr. Wankum felt uncomfortable him being sedated for such a long period of time, so it's postponed til tomorrow or Thursday.  They gave him a unit of blood, his count wasn't too low but they didn't want to wait.  Jeremy's arterial line was kinked so it had to be moved to the other arm, they had to give him some sedation meds for that so he has slept lot today.  He has had several moments of waking up, being the happy, smiling and even some giggling little boy.  His blood pressure has been good, just 2 more turn downs and he's off all blood pressure medicine, should be off by midnight........WHOAAAA !!!!!!   He sit up in his chair for over 2 hours this morning, PT got him up, tried to get him to use his legs but no luck in standing.  We got him back in the chair this evening for about an hour for him to eat supper, he ate 1/2 grilled cheese sandwich, a few bites of chicken noodle soup.  He is resting comfortably in his bed.  Dr. Wankum tickled his toes and he moved his toes and feet, they are getting good strong pulses in his feet. We got a visit from our favorite floor nurse, Shelly today, she came to see him. 

Today, I have had email rounds with Dr. Dan, he's snowed in and not left his house, can't blame him.  Jeremy's blood pressure has to be stable before he takes him back to the OR to remove the screw, he is not here on Friday so it may not be until Monday.  I don't know if there is a chance he will do it Thursday or not, he said if he can dig his car out tomorrow he will be up to see J.  

Here in Columbia, Missouri, our GREAT home away from home, a place I am becoming quite fond of we got the same stuff that all my Okie buddies got earlier today.  If you read Jeremy's blog from last January 29, Oklahoma was getting quite the winter storm, this was our first scheduled visit with Dr. Dan and I had to postpone it one week to February 4.  I can on a clear day sit in J's room, look out the window and see I-70 and the sign for Baymont Inn and all day I could see neither.  The snow has quit, it's clear and I can once again see outside.  I have not heard the acculmulation. 

I hope by tomorrow afternoon the roads are clear enough that I can get around, I found out from our nurse there is a laundry mat not to far away from here so I can get the laundry done that is piling up and get out of this hospital.  I may not be able to dig my car out, it's not like I brought, "winter blizzard" stuff with me.  My few trips to the same Wal-mart since being here, going to TGI Friday's on Saturday night to eat with my family and the Baymont Inn that has been the extent of my outings.  I have saved money being up here.  I have been doing Oklahoma Family Network work, helping families with resources, it's nice that our database is online so I can reach it from here, I got all my paperwork caught up while J was in surgery on Friday.  I however don't feel like I've used my brain, don't feel like I can think and if something requires I concentrate I have to skip it right now.  I have nothing to organize, plan, schedule, no one to tell what to do and my OCD is kicking in to over-load....Look out my OGE crews when I return, I will be difficult to deal with....