Monday, August 30, 2010

Welcome to Jeremy world.....

There was a song, can't remember who even sings the song, or the whole song not that I even care. I will on occasion when the mood hits do some radio surfing and occasionally land on the oldies, "What's going on in your world, it sure is lonesome in mine", that is just a small part of the song but I just want to say that is not the case in my world because I have a front row seat and live in Jeremy world....

We have this awesome thing with OU (Oklahoma University) and the request normally comes through the Oklahoma Family Network so me being the regional coordinator I try to help them find complex children, like Jeremy. The PT/OT students get assigned a child and they have to research that child, look at what resources are already in place, visit the child's home, visit a place the student goes, come up with a plan for the child and give a presentation. This is a requirement and it's awesome family centered practice. They are also going to get a front row seat into Jeremy world. It helps them to see what families who have children with special needs deal with daily. We always get a really good group and I'm excited to meet this year's group. They always want to learn about Jeremy, Jeremy the person and Jeremy the boy who has FG syndrome. It's always interesting since there is not much info on FG what they come up with. They always come up with interesting information and ideas.

I get an email from one of ours today, and we meet with them on Wednesday. I was explaining the recent surgery J had done to release the kyhposis and we had some setbacks so the spinal fusion would be done in the near future. Jeremy seems to be even complex than in future years. This is good, because they get to see how my world was recently rocked, how it's going to be continued to be rocked. They may not all become Pediatric PT or OT but the whole emphasis is to hope that they learn something that will impact the way they do future practice. It's all about family centered care.

I keep saying that I am going to write a book one day about living with Jeremy. Jeremy didn't come with a textbook and Jeremy has always wrote his own book, sentence by sentence, page by page, chapter by chapter. Welcome to Jeremy world, that is going to be the title of my book.

Sunday, August 29, 2010

I go to the rock....

Prayer Request: Pray for Jeremy to continue to build his leg muscles, continue good health. Pray for Dr. Dan Hoernschmeyer, our Pediatric Orthopedic surgeon, in Columbia, MO, as he prepares to make decisions regarding Jeremy's spinal fusion and prepares to do the surgery.

I picked that title because it's one of my favorite songs,"I go to the rock of my salvation, I go to the corner of my foundation I run to the mountain and the mountain runs to me, when earth all around is sinking sand on Christ the solid rock I stand, when I need a shelter, when I need a friend I go to the rock." You have to ask yourself, where do you go?

We have been home almost 2 weeks and are adjusting back to life, a little different life than I had expected but I've had peace and the one thing I know is, GOD is in control. It's going to be ok. There is just peace that can only be explained in GOD. I was reading over Jeremy's blog last night and realized it was this time last year that Dr. Anagnost, the Orthopedic surgeon who has been treating Jeremy's spine told me that we need to look at seeking correction. I admit I would have been just fine had that man never spoke them words to me. He also gave me some really good advice, "find a physician that does these surgeries often, so if something happens, the spine is a risky thing you know that you are where you need to be and you don't have that regret. Find a facility that can deal with Jeremy in case something happens so they can take care of him and not have to transfer him out." The search began. We went to Shriner's and it didn't take me long to realize that surgeon wasn't anything great, he wasn't a spine specialist and the facility was not equipped to deal with Jeremy if something happened. We moved on to St. Louis and see Dr. Bridewell and there is no doubt he was equipped and did many complex spinal surgeries and the hospital was equipped to deal with Jeremy. I got the feeling Jeremy was more research, like his next research paper, plus he fuses the spine with material not yet approved by the FDA and when J doesn't have typical reactions to typical things it freaked me out. Jeremy is my son not a research project. When Dr. Dan told me there had been a neuro change during surgery, J wasn't moving his legs I was concerned but I always had peace, peace that only comes from GOD. I knew we were with the right surgeon, I had done my homework. Dr. Dan has the expertise and does complex spine surgeries all the time. I was convinced of Dr. Dan, I trust him and respect his expertise. I knew he did his surgeries at the University of MO Children's hospital. I didn't know anyone there. Then on Sunday when J's pulmonary function became comprised, quickly the PICU was just as quick to react. They got Dr. Wankum, the PICU doctor, who started putting Jeremy on oxygen, chest x-ray to check his lungs, suctioned him out. When we thought Monday he might have to be intuabed to give his lungs time to heal so his heart won't fatigue because it's always better to do it when he doesn't need it verses it has to be done. I had the same peace that only comes from GOD and again I knew we were where we needed to be. I however am not saying I didn't get stressed out, or upset that things weren't going as it should. If Dr. Dan was to say, "we don't need to fuse Jeremy's spine right now we can put this off.", you had better believe I would accept that offer. I do live in reality world and these surgeries were not put in motion to make Jeremy a typical child. These surgeries were put in motion because when you have a severe curvature of 85% you are going to start to comprise J's heart, lung and kidney function therefore eventually end his life. I had a NSG who once told me we could do craniofacial surgery to fix Jeremy's head since it wasn't shaped perfectly, it was all cosmetic and wouldn't change anything. I didn't even think twice about that surgery. I would not put J through something so traumatic, he deals with enough. I again live in a reality world and realize Jeremy is not a typical child or normal but this is by the World's standard of typical and normal. I know GOD made Jeremy the way he is, he made me the way I am and that same GOD, I will stand before him and give an account for my life. I will give an account for my sins just as everyone in this world will, no one no matter what will be immuned from this process, even if they don't believe in GOD. GOD isn't going to ask me, did you have the best job, did you have the best clothes, did you drive the best car. He is going to ask me, "did you accept my son as your Lord and GOD of your life, did you find your way in my son" and then I want to hear, "well done thy good and faithful servent, enter into these gates".

Thursday, August 26, 2010

Some pictures of Jeremy

This is the Monkey blanket that Jeremy's teacher Mrs. Parsons and her big sister Beth made for Jeremy. They brought it over the night before we left and it stayed on his bed while we were at the hospital. He used it lot, everyone walked by the room and just loved the blanket. The nurses thought it was one of their blankets. Jeremy also signed his own signature on the way to Columbia...

On Tuesday, we received a GET well card from 2 of the nurses we had at the University of Missouri's children's hospital, Alice and Maragret. They were all awesome. Alice and Maragret we got while we were out on the floor and they were so compassionate and caring with Jeremy.

Last night I was in J's room getting his stuff ready for his first day of school, he crawled in there and I was able to get a couple of pictures of him crawling on the bed, getting on the bed and sitting on the bed...

Wednesday, August 25, 2010

Jeremy in recovery mode...

Jeremy slept pretty much all day from Wednesday to Saturday. He slept til 11am on Sunday but woke up for the day. He tolerated a trip to Reasor's and actually enjoyed the car ride. He also started to crawl around more. Monday when I was getting ready to go to work, he would not stay on the bed, he crawled off of it, I would put him back on and he crawled down. His new HTS started on Monday, Kelly, J has responded well to her. Tuesday he had his first PT session with our new herapist Amanda, when I got home he wanted to stand so I held his hands and he stood, he then tested the waters and walked around the couch holding on. Amanda got him to work really hard. He will get PT twice a week for 45-60 minutes. Jeremy was really tired when the session was over. When I got home, we went to pick up his new glasses, then a trip to Wal-mart to purchase a few needed items. He did well and enjoyed the trip. When we got home he rested for a while and then I took him walking in the stroller he really enjoyed that and it was such a cool, awesome evening.

Today we went to see Dr. Cyrus, he said his incision looked great and Jeremy looked great. He wanted him to stand, so he made him stand and walk from him to me as we held on to him. His little legs are so skinny, he has lost muscle tone and that is what we have to rebuild. They delivered his wheelchair today so he will have that to help get him around. PT will start working to build them legs and get him to walking.

Jeremy gets to go back to school tomorrow for 1/2 day and I think he is ready. He will continue 1/2 days in the afternoon and ride the bus home. Next week he start Thursday and Friday full days. The day after Labor day he should be ready to start full time. He is staying awake through the day, being alert, happy and I think getting back to his routine will help him. The first couple of days will be a tough transition, and he will be tired when he gets home. He will adapt.

Monday, August 23, 2010

Happy 10th Birthday to Jeremy's heart...

Today, on August 23, Jeremy's 3 separate heart defects were successfully repaired giving him a whole new life. Jeremy underwent major open heart surgery at 7am and was out by 12pm, this all taking place 2 weeks after he turned a year old, weighing 14 pounds. Jeremy spent 4 days in the PICU, 2 days on the floor for a grand total of 6 days in the hospital, one of his shortest hospital stays. Jeremy's heart was demanding so much of the food he was taking in that even the additional calories were not helping. Jeremy was in congestive heart failure and failure to thrive at one year of age. Jeremy had no energy to develop, could barely hold his head up and was just starting to roll. That all changed after Dr. Richard Ranne repaired his heart, he was able to keep the calories and started to thrive. Jeremy started to progress and took off from there. When Jeremy turned 2 years old he was a champion crawler and cruiser.

Friday, August 20, 2010

1st day of 5th grade...

Today has been an emotional, bittersweet day. I seen parents on my way to work, gathering their children, I passed the school bus in our neighborhood, kids walking to school. It is the 1st day of school for Sapulpa Public schools. I would normally be rushing around to get myself ready, get Jeremy ready and would make a game out of getting to the car so we could leave. I would rush home from work and wait for the bus to drop Jeremy off. We would talk on the way to the house. This was Jeremy's 1st day in the 5th grade and his last year at Jefferson-Heights Elementary school.

It's tough to see my little boy at home recovering from his 1st spine surgery and miss not just the 1st day but possibly 1-2 weeks and transition back to 1/2 days.

Wednesday, August 18, 2010

We are home...

Mike brought up Jeremy's brace yesterday morning, made adjustments and Dr. Dan was happy with the way it fit. Dr. Dan and Dr. Robertson got all of our paperwork in order to release, but wanted X-rays first. Our nurse, Alice took us down to X-rays, we did some sitting, some in the brace and some out. Dr. Dan wanted to see where Jeremy's spine was and how the brace was holding him after surgery. They were to page him when finished so he could view them before we were released. I spoke with Dr. Dan on the phone in radiology and he was pleased with how the brace was holding Jeremy, there was some correction. Alice, our nurse took us back to our room and went over all the discharge instructions. I had them to page Dr. Robertson so I could get a picture of him and Jeremy, he is rotating out so when we come back he won't be with Dr. Dan. Dr. Robertson came by, we got the picture and I thanked him for what he did for Jeremy. We loaded up, took Jeremy down to the lobby in his car seat, mom waited with Jeremy and I went to ground level to get the car to bring it to the front door. On the way I ran into Dr. Dan, he reviewed everything with me and told me he wanted to see Jeremy through this and to keep him updated. I thanked him with what words I had, there are just not many for what that man did while we were there. It was a bittersweet moment and I had tears in my eyes, you adjust to being there. Jeremy traveled well, we did have to stop a few times to re-position him. We left the University of Missouri Children's Hospital at 12:15 and arrived home at 6:15pm. I made Jeremy a pallet on the floor when we got home, he was so happy to roll around and see his toy story tent. I managed to get 12 days worth of stuff put up, laundry started. I gave J some Tylenol to help with the pain and to help him sleep.

We slept in for a little while this morning. I have to admit it was nice to be in our house, quiet, just the 2 of us and get up this morning run around in my PJ's and make coffee in our house. I have to admit, I missed Dr. Robertson waking me up at like 6am each morning, the funny thing is he never really said a word until I woke up. I don't know how long he stood there each morning. I gave Jeremy a bath which I know that had to feel good, he hadn't had one since surgery. He did stand on his legs with my support for a while to let me dry him off. I got him dressed got the brace back on and laid him on the pallet. I came back in and he had gotten on the couch by himself which seems to be his comfortable place.

I am excited to get back to work tomorrow, get back to using my brain but I think it is all about getting back to our lives.

Jeremy will start PT probably Monday, we have ordered the wheelchair and should get it any day. We will go back and see Dr. Dan on September 27, he will see where Jeremy is at and see about the spinal fusion. This still has to be done and he acted like sooner than later. My speculation is, when we see him on the 27th he will have a good idea of where Jeremy is at and I foresee us doing surgery mid-Octoberish...

Monday, August 16, 2010

What is a plan?

If someone was to count the number of times on Jeremy's blog or my facebook that I have used the word "plan" starting this time last year you would loose count. We had to come up with a plan to get Jeremy's spine fixed this whole process started this time last year when his spine progressed and we could no longer wait. I am a planner, I am happy when I am planning something, anything and my inner
being is not in sync if I'm not planning. I tend to drive one of my sister's crazy since I have to have a plan. I had time this past week to ponder and it seems like GOD kept leading me back to the word, "plan".

Jeremy was admitted on August 6, underwent successful surgery to release the kyhopsis, the anterior surgery and this had to be done so the spine could straighten. He was to go into halo traction for a week to help the spine relax and straighten naturally on it's own and then on August 13 his spine was to be fused. This was the, "plan". Many of you have been with me during the process of finding who to use and where to go. I have no doubt, and am at total peace that GOD lead us to Dr. Dan Hoernscmeyer and the University of Missouri. I trust Dr. Dan, his expertise into this spinal mystery. I agreed with his plan, I knew he was doing what was best for Jeremy's spine to get it corrected as much as possible and to prevent progression.

I try to be teachable when GOD is speaking to me. I have a friend who keeps sending me Jeremiah, 29:11, "for I know the plans I have for you , "declares the Lord", plans to prosper you and not harm you, plans to give you hope and a future. GOD also has a plan for Jeremy's life. I goggled the definition of plan, "A scheme, program, or method worked out beforehand for the accomplishment of an objective". Our objective was clear and Dr. Dan had a good plan and he even commented one night he had a plan.

I told him what GOD has been teaching me of plans and how my friend keeps sending me Jeremiah 29:11. I don't know why Jeremy's spine mis-behaved, he don't know why. I had plans to follow Dr. Dan for the rest of Jeremy's life for his spine, I however didn't plan on coming back for the 2nd surgery, I had plans when we left to have his spine surgeries over and done with. I didn't plan to come back for another surgery. I don't have the answer about Jeremy's spine at this time, and Dr. Dan doesn't know what he plans to do. We come back in 6 weeks to see where Jeremy is at and then we will go from there on the spinal fusion.

Friday, August 13, 2010


Jeremy has had an awesome day, Mr. Happy boy woke up smiling, I even got a a picture of him giggling really hard and that was so nice to see him coming back, he found it funny that he could raise and lower the bed. Mike brought by his brace, put it on him and me and PT got him up to sit in the chair, he did stand on his leg and push up briefly. Dr. Dan came by later to look at the brace and was happy with it. I really like this brace, it comes in 2 parts so it is easy to put him in it. He will go back to wearing it 24/7, take off for a bath. Jeremy ate an egg, banana for breakfast hardly touched his oatmeal but for lunch he had a grilled cheese sandwich, all his mashed potatoes w/ gravy and 1/2 fruit cup and he has drank 4 oz pedisure. They turned down his IV fluids so he would drink more, he is at 2% oxygen and then will turn that down. He's doing fine with it. We sit him in the chair for an hour and 1/2 and it wore him out. He is still in recovery mode from the major surgery, plus the pulmonary slowed him down that will get better has he gets stronger.

We are being discharged out to the floor. Dr. Dan came by and said he would come by in the morning, then he was leaving town and would come back up Sunday evening to check on him when he gets back in town and if all goes well we will leave Monday, he said he would feel better with us leaving Monday early so he can be around. He left a message for Dr. Cyrus and they will touch base Monday so he can fill him in on everything. I have the PT set up and we are working on the wheelchair. Dr. Dan also wants to talk to the PT as well to let them know what he is thinking on his therapy.

We will come back to see Dr. Dan in 6 weeks, do X-rays see how Jeremy is healing and we will figure out the plan for the fusion. Dr. Dan still doesn't know why Jeremy's spine mis-behaved.

Prayer request: Jeremy continues to rest so he can heal, I can continue to rest, pray for spinal health for J's spine to start reacting, him regain them muscles in his legs. Continue to pray for Dr. Dan, he has to come up with a new plan for Jeremy.

It meant lot to me that he told me that he has some people praying for Jeremy, I knew he was a Christian and prayed. I told him that I have a friend that keeps sending me Jeremiah 29:11 and I tell her to stop because I know GOD's plan is not always our plan but I wanted Dr. Dan's plan to be our plan. I told him that he doesn't know how many people he has praying for him since we seen, and that he has been on our prayer list at church since February when we saw him plus all over Oklahoma and who knows what other states but that people are getting to know Dr. Dan.

Thursday, August 12, 2010

New Plan

Thank you for the prayers. Jeremy is sleeping really good so we are letting him, the PT is coming up later to get him up and about. Mike came up to measure him for his new brace, it will be different than the original one we were measured for at our Pre-op appointment. If he continues to do good he will go down to a pediatric nose canala, he is on room oxygen and a lower flow. We will continue the 7 day antibiotic just to make sure no infection sets in, he started that on Sunday. They will continue breathing treatments every 8 hours. The chest X-ray is about the same, but the intenvist says clinical wise he is doing great. They sedated him and Dr. Dan and Dr. Robertson removed the halo, it was a bitter sweet moment for me because it means the plans of change. We are hoping that with the halo off he will rest better, hold his head up more and maybe that will help him to realize the difference and move on neurologically. He will continue to watch him and see if motor function returns.

The new plan is we go home with a brace that will hold Jeremy upright and come back see Dr. Dan in 6 weeks. Dr. Dan will then look at how he is doing and see where we go from there. I did ask if there was a possibility that he might put J in the hospital a week before spine surgery in traction before the spinal fusion which is a possibility. Jeremy will wear the brace 24/7 and Mike will bring it up tomorrow. Dr. Dan wants PT to get Jeremy up this afternoon and then to start getting him up in the chair with his brace tomorrow. Dr. Dan is going to communicate with Dr. Cyrus on the PT to make sure we have someone that is watching Jeremy with his motor and to work with him. I told him if it would be better if we sought a therapy place or had one come to the home like Barb and Stacy does and he said that would be fine, whatever works best for us. When Jeremy goes home he will have no restrictions other than wear the brace it will prevent him from doing anything he should not be doing.


Jeremy tossed, turned moaned and groaned all day and all night he probably only slept about an hour if that. I tried to lay down to calm him, lay where he couldn't see me but nothing worked. I was so praying that he gets a good nights rest. His breathing is awesome, chest X-ray looks like yesterday. I am exhausted. Dr. Dan called up to the floor and he is coming in between OR and clinic at noon to remove J's halo, he still wants PT to get him up, they will have to give Jeremy some sedation he is putting him in the brace and no surgery. I guess we are going to we will come back to see him in 6 weeks post-op and go from there. I am very discouraged and frustrated at this point. I think it was because I wanted everything to happen for Jeremy to get this done and be able to move on and I wanted Dr. Dan's plan to work.

I know GOD has a plan, I however am not understanding it at this point, I however don't want to understand it at this point. I am tired, literally exhuasted. I think after he removes the halo, J will rest comfortably and I should be able to.

Wednesday, August 11, 2010

Rough night but good night...

Jeremy had a rough night, but it was because he was getting more back to being his ornery little self, he wasn't sleeping very well, tossing around the bed. They did let me lay next to him and he relaxed it was like he was needing me close. He is getting tylenol faithfully to help with the pain, he did really good yesterday but he started hurting. We had issues with our IV, meaning he removed 2 of them. Dr. Wankum showed me the X-rays, his lungs looked so much better from yesterday to this morning, he is on room temp oxygen and they are lowering the flow as the day goes by there is a good chance today he will just be back on the pediatric nasal canala. He has removed it several times and his stats stay good. He almost ripped out the chest tube and it will get removed either today or tomorrow but more than likely tomorrow after he gets his chest X-ray, they did clamp it off. He ate 1/2 bowl of oatmeal and took his ADHD meds so we are hoping they will help to calm him he drank a full can of pedisure. Kathie, PT got him up, he wouldn't stand on his legs like yesterday but did sit in the chair for almost 2 hours. He was more alert today sitting in the chair but was more fussy, I think he is worn out. He is in bed resting right now, when PT came up he was alseep. When he wakes up I'll order him some mashed potatoes w/ gravy. Today soft foods, tomorrow chewing some soft foods, like peaches... Whoa he will be happy.

Dr. Dan just came by, he wasn't thrilled with the fact he wouldn't stand, he was thrilled with how he is doing pulmonary wise, diet wise that is all good healing but he was impressed that he is moving his legs more. He will come back by later today to check on him. We are not having surgery this week 95% sure of that fact. He will make a decision in the next few days if he wants to put him back in traction and then look at surgery next week or put him in a back brace we go home and come back to see him in 6 weeks and look at the 2nd surgery then. We may be home next week as planned but come back for the 2nd surgery or we may stay a little longer I will know more in the upcoming days...

Tuesday, August 10, 2010

Jeremy's day....

Jeremy has been alert most of the day, he goes in and out of sleep but he is looking around, and checking out things. He is saying words especially UP but has been shaking his cute little head like he does and saying, "NO". He did sit in the wheelchair in traction for over 1 1/2 hours. He acts like he is hurting on the side that the rib was removed which would not be uncommon, and he's had no pain meds since yesterday. His breathing is better, his oxygen levles are staying consistent so they will check an X-ray in the morning, the one today was a little worse than yesterday but Dr. Wankum the intensvist feels it's just lagging behind after clinically looking at him. He is struggling with some bowel movement issues but we are giving him something for that. Kaitlyn, the PT says he did put some weight on his legs. We were able to advance his diet, he has ate a cup of vanilla & chocolate pudding, he got mad 1/2 way through the 1st cup and took it from me and held on to it. I neogiated the 2nd cup for the cup not yet open and he's happy hanging on to something. I think maybe he feels like he can control that. We are getting 2 new roomies tonight, but I had planned on staying up here tonight as he is more alert, cranky.

Dr. Dan just came by, he had surgeries today and he's still not moving his legs as he would like to see them, but he is encouraged by his pulmonary status, him being alert and he is starting to flex his toes and he is seeing more good things. He still isn't saying, yes or no to surgery on friday but he is talking about putting him back in full traction, continue to work with PT, keeping us here and moving forward with the 2nd surgery, but no date but J would be a first priority. We could be here a little longer than we thought, but again knew this was a possibility. Dr. Dan said he would come back by and check on him before he left, he had to run down to make a phone call.

I gave him Dr. Cyrus phone number and told him that we had talked this morning about J's behavior, his timeframe, his world being rocked and he said he would give him a call to touch base with him.

Continue to pray for lung health for Jeremy, movement and get back to his little old ornery self.

Monday, August 9, 2010

Jeremy update...

It's been a roller coaster day. Jeremy had some fluid settled in his lungs, he has been on oxygen off and on most the day, they are giving him an antibotic, breathing treatments and being aggressive. Dr. Dan had PT to come in get Jeremy up and Dr. Robertson hooked up the traction. Jeremy sit in the chair for over 2 hours in traction with 2 pounds. He had been pretty much whining off and on, trying to sleep but couldn't but he really did better sitting in the chair and seemed to enjoy it but it wore him smooth out, when they put him in bed he passed out and sleep the soundest I have heard him in a long time, he doesn't sleep that soundly at home. I might also add he's not had any pain medicine since early this morning. If he doesn't improve they will look at intubation as the last restort to give his lungs time to rest and him to heal. His breathing is so much better, he is having more productive coughs, and they are turning the oxygen down. He was just giving a breathing treatment and he's been wide awake, alert and getting that glimmer back into his eyes.

Dr. Dan is still confused and not sure why he has had the neurological change, when PT got him up he wouldn't put any weight on his legs, but when he tickles or pinches him he flexs and moves so he is not sure why when the surgery went as he would have hoped for so he is not sure what is going on but if that doens't improve he feels uncomfortable with proceeding with our plan so we are now at 70% chance of no surgery on Friday. What does that mean, we don't know. He could send us home in his brace, see us back in 6 weeks and do and see where he is at neurological. Nothing is set in stone, this could be due to J's being sedated, fighting this stuff in his lungs we just don't know or just recovery from the major spine surgery. We would all dance if he was to jump up out of the bed and run down the hall.

Prayer request: Pray for lung health, that Jeremy continues to improve, he can cough productive, continue to feel better and pray for his legs that he will start using them and get back that neurological puzzle we are missing.

Sunday, August 8, 2010

Happy 11th Birthday----Jeremy Ray !!!!!

Today at exactly 9am GOD answered an 8 year long prayer for me, and blessed me with a child I had so longed for. It was shortly after 12:30, when Dr. Cyrus made his
2nd appearance into our lives and gave me the news that no parent wants to hear, it wasn't just that he has hydrocephalus but it was my son was going to have issues that I had no control over, and didn't understand. I felt cheated and wronged. I was a christian had faith in GOD, youth director for over 10 years, very involved in my church this doesn't happen to me. God has really been using the passage Jeremiah 29:11 in my life this year, it all goes back to GOD didn't want to hurt me or Jeremy but GOD has a plan for my life and Jeremy. 11 years later, I look back and see how GOD has used J's life to bring many people to his ways and understanding, I see how he has used me to minstry to other families. I've learned and the blessings of so many people GOD has brought into our lives to work and take care of Jeremy. I don't take for granted things in life. GOD blessed me beyond measure on August 9, 1999 he gave me Jeremy, he entrusted me with this precious life.

I know this is not the ideal situation for a 11 year old boy, but this is the plan.

Happy birthday to the best little boy in the entire world, who has brought happiness beyond imagination, tears of joy, tears of pain, heart ache but also unconditional love, as well as the many in our live that has been a blessing. Jeremy enjoyes life, loving and living and shows me back to GOD on a daily basis.

I love you Jeremy Ray and couldn't imagine my life any different....HAPPY BIRTHDAY JEREMY !!!!!

Sunday, August 8, 2010...

Dr. Dan came in yesterday evening, J was starting to move his legs when he would pinch or tickle him so he said that was good news and he was happy to see that. They had taken him off the one pain meds but left the other on, so he was getting morphine as needed which yesterday was needed. He had this sigh of relief on his face, I have learned if the doctors are happy then things are good.

We were blessed to get a room at the Wyatt Place, this is the University ran facility for families who have someone going through Cancer treatment at their facility, they opened it up to the children's hospial families for the weekend since most families go home and the motels were full. I felt comfortable leaving Jeremy so we went there to sleep, and got back up here this morning. Jeremy had been getting morphine every 4 hours for pain, his last dose was due at 9am but he hasn't needed it and is able to calm himself back to sleep and is resting peacefully. The surgery team came in and changed his bandage, fairly long incision so he added another battle wound. He is now off of all the pain meds except Morphine as needed, this will allow him to be up, agiated and see where we get. Dr. Dan was getting with PT and will allow him to start sitting up, he is going to be allowed to advance his diet. Dr. Dan would like to start tomorrow to put him back in traction. He said at this point it is 60% unlikely we will have his spinal surgery to fuse the spine on Friday, but 40% likely we will. He wants him in traction and is not going to send us home on traction, if something happened we would need to be here and he is here to watch him. I don't know if Jeremy will have surgery this friday, the friday after we will know within the next few days he wants to make sure J's spinal cord is healthy. I told him that is what I want for Jeremy.

I am going to find a Wal-mart after while and go buy Jeremy a birthday present he can have up here, I can't believe my son turns 11 tomorrow....

Saturday, August 7, 2010

Surgery details.....

Wow it's been crazy, I haven't been able to get my computer settings to work with the internet at the motel or hospital so I'm trying to work that bug out where I can access my laptop so I haven't been able to update his blog but have been updating facebook with my blackberry that is easy.

Let's just get this out, it wasn't what I expected because I am human and I have plans in place and my plans are not always GOD's plan so I'm putting my faith, trust in him that he knows what is best for Mr. Jeremy. I mean after all GOD put us in Columbia under Dr. Dan Hoerscenmeyer's care because that is who GOD had picked out. If you remember my prayer when I first found out about J needing to get the spine fixed, was GOD heal the spine without surgery (I am a mom, but I am a christian and I believe GOD could do it if that was his plan, but it wasn't) but if it wasn't his plan to send us to the surgeon he had picked out because again GOD had a plan in place. You can read previous post to find out how we landed in Columbia, under the care of Dr. Dan but this was where GOD wanted us.

We arrived in Columbia, on Thursday, made our appointment with Dr. Ram who was going to do the anteior approach, I thought they would be cutting Jeremy open through his heart surgery incision so was relieved that it was the side, he explained what he would be doing. We went to our motel went to, "Going Bonkers" allowed Jeremy to play, went back to the motel and J wondered until 11:30pm, which was fine. We got up Friday morning, bright and early and arrived at the University of Missouri Children's Hopsital by 5:30am to check in. Dr. Dan came by, we hadn't seen him since February at our original visit he came by to see how things were going.

Jeremy went back at 7am, and about 8:30am I was told they were just getting started. I was notified by 11:30 that surgery was complete everything had went as expected and they would be closing which could take approximatley a few more hours. We met with Dr. Dan, he explained how the surgery went as expected, no surprises, he was doing good and they did have to remove the 7th rib which I knew they might. He did mention during surgery they hook the patients up to Neuro-monitors to make sure the spinal cord doesn't get in a bind during surgery and at one point he was applying the refractors and the monitors went off, he backed off and all went back to normal. He was a little concerned that Jeremy wasn't moving his legs as much, but he said he was sleeping really soundly. Jeremy was transported to PICU, where we waited to see him. Dr. Dan checked on him and we hadn't seen him yet he seen me sitting in the consultation room and took us back there. Jeremy's blood pressure was running low so they were monitoring that. My next surprise was Dr. Robertson, the resident telling me he spoke to Dr. Dan and they weren't thrilled with Jeremy not moving his legs so Dr. Dan wanted to do an MRI. This was to make sure there were nothing that was compressing the spine that he needed to be concerned with. I have said how compassionated, caring Dr. Dan is, it wasn't shortly after Dr. Robertson told me that I turned around to find Dr. Dan by Jeremy's bed. It's also always nice to see hospital staff work well together and to respect the physican in charge of your child and he has that respect from staff. Dr. Dan is just a good, caring person and offered to take my mom to the motel we were going to stay at. Dr. Dan said there was nothing on the MRI to indicate any spinal cord damage. He took him out of traction and changed his meds and put him on some steriods to protect the spine. J's blood pressure ran better through the night, he didn't always sleep soundly and was in and out. I stayed with him and about 2-3 am Jeremy started to sleep soundly so I got a little sleep.

This morning, Jeremy's blood pressure is still lower and he's not moving his legs. Dr. Dan was able to compare the MRI we did in Tulsa in September (because I was good and had all of that in J's care notebook). Dr. Robertson got the MRI up on the screen, came got me and said Dr. Dan wanted to show me something, so they were able to compare and it's unchanged. He doesn't know why the spinal cord is stressed. He took him out of traction, so with that he can come off of the pain medicine that is affecting his blood pressure, they will give him something else for pain. He wants him to start waking up, sit up, possible eat my mouth if Jeremy will and access him at that point. Dr. Dan can't tell me if he is going to do the spinal fusion surgery on Friday, next friday or when he said the next few days will give him a good plan and idea.

The social worker got us a room at the Wyatt guest house (is the University of Missouri's) house for families who are dealing with cancer they can stay here. Their census is low on weekends as people go home so they offered to help out the hospital since the RMH was closed. We do have to check out tomorrow and don't know if we will have a room anymore. The plan is to do laundry, take a nap, take a shower and then go back up to the hospital this evening. Dr. Dan told me to get out, go check in the motel and come back up later and he was coming up later to see Jeremy. Since they are taking him off his meds, J will be more awake, be mader than an old wet hen so I will probably stay with him through the night to comfort him.

Prayer request: Pray for knowledge for Dr. Dan as he figures out what is going on with Jeremy, Jeremy to be able to tolerate pain, blood pressure to return to normal, no infection, his spinal cord to start reacting as he would like to see. Pray for peace, rest and comfort for my mom and me. I am at peace with the whole situation, but I am also a mom concerned about her son. If we need to stay here 3 weeks to figure out and come back we will do what we have to do for Jeremy.....

I am making short updates on facebook, but since I know the RM has a computer I can make some updates to his blog as time goes on...

Wednesday, August 4, 2010


If anyone wants to send Jeremy a card while he is in the hospital here is the address:

University of Missouri- Columbia
1 Hospital Drive, MC213
Columbia, MO, 65212
Attn: Jeremy Roberts.

This is Dr. Dan's Medical assistant, Holly's address and she said she would bring it up to him.

Tuesday, August 3, 2010

Plans change...

I am working to keep J's blog updated for those who check it for updates.

I am so disappointed, the RMH in Columbia was just shut down TODAY, due to mold. There is a biker rally and every motel is booked until Sunday. The RMH was the perfect set up for us, it is a block away from the hospital and mom doesn't drive. I was planning to stay in the room with Jeremy at night, but go to the RMH to have a quiet place to rest, shower and get ready. I will go to the RM room one floor down to take showers and do laundry, this is a shared shower between every child's family who is there. The social worker asked me what I needed, so I explained the situation. I told her that my mom was coming with me to help take care of Jeremy and she doesn't drive so she needs a place she can sleep. I didn't see any motels within walking distance during our short/quick trips.

We do have reservations at the Ecno-lodge on Thursday, I wanted to make it like a vacation, have some fun the night before with a pool and hot tub. I'm so glad I did because I don't know where we would have stayed.

Monday, August 2, 2010

Jeremy's surgery updates

I have been asked about keeping J's blog updated through his surgery and recovery. That is my plan to update his blog just as soon as I can, the hospital has Wi-fi and I will have my laptop with me. I plan to catch up on database work for OFN to keep my mind occupied. I will also be updating my facebook, but I do that through my blackberry....