Jeremy started back to school all day last week and did good, this included he had to start back to morning latch-key. I must admit this was an adjustment for me, I've had a summer of being spoiled with an HTS coming to the house. I just had to get myself ready and out the door so now it's back to getting us both ready and out the door in a timely manner. It was also a busy week, I had 2 parent meetings after work and Jeremy had an appointment on Wednesday to get his brace adjusted and new AFO's. I was exited to see Friday come and the thought of nothing planned.
Saturday morning was nice, we slept in, got Jeremy's breakfast and me coffee. We were able to take our time getting dressed. We went to Wal-mart to get his prescription but he was being so good that I got what groceries I could think of we needed. I took Jeremy to Tulsa to visit one of his teachers he had while at Happy Hands, she was having an Avon sale. We came home, made some meatballs from a recipe my pastor's wife gave me, settled in for the evening.
This morning we had such an awesome, sweet worship service and a great sermon. We even stayed for dinner.
There is so much to be thankful to God for and I am blessed beyond words and more than I will ever deserve. I think some good highlights, getting a video of Jeremy walking and Dr. Dan able to see it and stating what great news that was, Jeremy's teacher telling me that if I don't want to send the wheelchair I don't have to because Jeremy isn't using it, a note from our PT stating Jeremy continues to make progress and builds his skills. Jeremy isn't back to where he was before surgery but he's getting there.
Prayer Request: Jeremy continue to stay healthy and build up them muscles. Dr. Dan as we go back to see him in 2 weeks and he makes plans for J's 2nd surgery.
Sunday, September 12, 2010
Friday, September 10, 2010
When I let it go
This is a song by Sierra, they are one of my favorite Christian women groups. I have loved them for years. I love the words to this song probaly because this is exactly in sync with what GOD is teaching me.
I have recently came back to a realization. I say come back because this isn't a new lesson I'm learning. There is somewhere along the way I started thinking I was more than I am, and thought I had control of my life. I accepted Jesus Christ many years ago and I totally commited my life to him. I need to daily, alright I am hard-headed & OCD so sometimes it’s a minute by minute lesson for me to commit and surrender that control back to God that I'm holding on. I need to be able to give God a 100%.
This time I've got to trust You
I've got to accept Your plan
I have tried to guide my circumstance
But there's just no way I can
When will I learn this lesson
Your ways are not like mine
Lord, help me to surrender
The control I try to have on my life
When I let it go
You take my hand and gently lead me
Then You let me know
Just how peaceful my life can be
When I let it go
Your never-ending blessings
Like a river start to flow
When I let it go
Too many times I'm searching
For the things I think I need
When I try to look for more
I always seem to give You less of me
Lord, help me gain this wisdom
My foolish mind still lacks
'Til I find a way to let go
Of the part of me I'm holding back
I have recently came back to a realization. I say come back because this isn't a new lesson I'm learning. There is somewhere along the way I started thinking I was more than I am, and thought I had control of my life. I accepted Jesus Christ many years ago and I totally commited my life to him. I need to daily, alright I am hard-headed & OCD so sometimes it’s a minute by minute lesson for me to commit and surrender that control back to God that I'm holding on. I need to be able to give God a 100%.
This time I've got to trust You
I've got to accept Your plan
I have tried to guide my circumstance
But there's just no way I can
When will I learn this lesson
Your ways are not like mine
Lord, help me to surrender
The control I try to have on my life
When I let it go
You take my hand and gently lead me
Then You let me know
Just how peaceful my life can be
When I let it go
Your never-ending blessings
Like a river start to flow
When I let it go
Too many times I'm searching
For the things I think I need
When I try to look for more
I always seem to give You less of me
Lord, help me gain this wisdom
My foolish mind still lacks
'Til I find a way to let go
Of the part of me I'm holding back
Monday, September 6, 2010
One Month ago...
I can't believe that one month ago today, Jeremy had his first spine surgery. The day started out great. We arrived at the hospital to check in at 5:30am, Jeremy did well during surgery, a surgery that went as well as Dr. Dan expected was also a day that our world was temporarily changed. I got to see first hand the reason GOD sent us to Dr. Dan, not only a surgeon with expertise into complex spinal issues, but a truly beyond, caring, compassionate physician who had Jeremy's best interest in mind. A season that GOD has used to teach me many lessons, remind me of the things I have taken for granted, one of which was my personal relationship with GOD. I had allowed GOD to take the back seat and put myself in control.
Tomorrow it has been 3 weeks since Dr. Dan and Dr. Robertson released us and we left University of Missouri, Children's hospital and in 3 weeks we go back to see Dr. Dan.
Dr. Robertson was the resident we had, we seen him almost as much as Dr. Dan. Dr. Robertson rotated out in August so when we go back we will not see him, I told him we have to get a picture of him and Jeremy. This picture is right before we left, Jeremy (notice J's MIZZOU shirt, I'm quite proud of it) and Dr. Robertson.
Dr. Robertson was the one who woke me up at 6am each morning and was awesome with Jeremy. I really liked him. I was talking to him before we left and told him we would be back, he said he was going to watch the board and keep up with this little guy. That touched me, and showed he truly cared. I like to see the residents, and hope that the experience with Jeremy and I will impact the way they treat families in the future to truly make them family centered doctors. Dr. Robertson never questioned my insight into Jeremy and respected my expertise. I appreciated that and feel he doesn't have any improvement to do in the area of being a family centered physician, he is there.
I will get a picture of Jeremy and Dr. Dan at our Post-op visit.
The day we came home J couldn't tolerate sitting up, let alone put any weight on his legs. In the weeks we have been home Jeremy continues to gain muscles, strength and lost skills. Jeremy had PT on Tuesday and the therapist said this was a 100% improvement from where he was at one week ago, which is his story.
Jeremy has transitioned back to school full time and doing well. He only stays in the wheelchair approximately 30 minutes a day, he is sitting at the lunch table eating with his peers. Jeremy is crawling everywhere, cruises around furniture and just last week starting to take just a few steps on his own. At church yesterday, Jeremy told me he was wet, on his own he walked from the nursery to the bathroom, pulled down his pull-up, I sit him on the potty, he sit there for a bit, got up and washed his hands. This morning when he finished his sausage, he got up from the table and put his plate in the sink. I am looking at a living room of cushions being taken off the couch, walking around the house, opening doors, turning lights off behind him. One of the fondest memories I have of this past summer was Jeremy each morning going from the bedroom to the living room looking out the window waiting for Misty to arrive. I watched Jeremy walk over to the couch, grab the "Inside Columbia" magazine and for the first time stop and look out the window. I am sitting here watching my son, laugh and read the magazine. He has been walking most the morning with no assistance. Jeremy just came into the living room with my shoes on, very proud of himself, walking on his own.
Continue to pray Jeremy to stay healthy, muscle strength and Dr. Dan as he decides when and prepares for Jeremy's spinal fusion.
Tomorrow it has been 3 weeks since Dr. Dan and Dr. Robertson released us and we left University of Missouri, Children's hospital and in 3 weeks we go back to see Dr. Dan.
Dr. Robertson was the resident we had, we seen him almost as much as Dr. Dan. Dr. Robertson rotated out in August so when we go back we will not see him, I told him we have to get a picture of him and Jeremy. This picture is right before we left, Jeremy (notice J's MIZZOU shirt, I'm quite proud of it) and Dr. Robertson.
Dr. Robertson was the one who woke me up at 6am each morning and was awesome with Jeremy. I really liked him. I was talking to him before we left and told him we would be back, he said he was going to watch the board and keep up with this little guy. That touched me, and showed he truly cared. I like to see the residents, and hope that the experience with Jeremy and I will impact the way they treat families in the future to truly make them family centered doctors. Dr. Robertson never questioned my insight into Jeremy and respected my expertise. I appreciated that and feel he doesn't have any improvement to do in the area of being a family centered physician, he is there.
I will get a picture of Jeremy and Dr. Dan at our Post-op visit.
The day we came home J couldn't tolerate sitting up, let alone put any weight on his legs. In the weeks we have been home Jeremy continues to gain muscles, strength and lost skills. Jeremy had PT on Tuesday and the therapist said this was a 100% improvement from where he was at one week ago, which is his story.
Jeremy has transitioned back to school full time and doing well. He only stays in the wheelchair approximately 30 minutes a day, he is sitting at the lunch table eating with his peers. Jeremy is crawling everywhere, cruises around furniture and just last week starting to take just a few steps on his own. At church yesterday, Jeremy told me he was wet, on his own he walked from the nursery to the bathroom, pulled down his pull-up, I sit him on the potty, he sit there for a bit, got up and washed his hands. This morning when he finished his sausage, he got up from the table and put his plate in the sink. I am looking at a living room of cushions being taken off the couch, walking around the house, opening doors, turning lights off behind him. One of the fondest memories I have of this past summer was Jeremy each morning going from the bedroom to the living room looking out the window waiting for Misty to arrive. I watched Jeremy walk over to the couch, grab the "Inside Columbia" magazine and for the first time stop and look out the window. I am sitting here watching my son, laugh and read the magazine. He has been walking most the morning with no assistance. Jeremy just came into the living room with my shoes on, very proud of himself, walking on his own.
Continue to pray Jeremy to stay healthy, muscle strength and Dr. Dan as he decides when and prepares for Jeremy's spinal fusion.
Thursday, September 2, 2010
1st full day of 5th grade...
Today was Jeremy's first full day of the 5th grade. The little monkey has had all summer he could sleep in but he would get up but this morning he actually went back to bed...go figure. I went in late so he could ride the bus to school as I'm trying to slowly get him back into school. He ate a good breakfast of 2 sausage patties, 1 bowl of oatmeal and a banana cream pedisure. We got dressed in our new school clothes, got into the wheelchair and went outside to wait on the bus. We passed time by him throwing me the ball and me chasing it. When the bus came I put him on the stairs, he walked up the stairs with assistance and sit in his seat. I checked on him through the day, his para sent me a few pictures and updates on him. The story is he only stayed in the wheelchair approximately 30 minutes, spent the rest of the time walking around holding on to things and in the lunch-room he sit at the table. I was not surprised to take a very exhausted, cranky boy off the bus. I had arranged for Shawna one of our HTS to come this evening so I could go visit families. When I got home at 7pm, she said he got up on the couch and would drift in and out of sleep. I gave him a nice warm bath, massaged his legs really good and gave him some children's Tylenol to hopefully help him be able to relax and sleep. Tomorrow is the same routine, and Amanda his PT will be at the school to work with him so I really expect a tired little boy. I thought this would also give him 3 days to recover before starting back Tuesday in full force.
Continue to pray for Jeremy to stay healthy and for continued progress on his muscle building. Pray for Dr. Dan, we go back in 3 weeks for our post-op visit and to see about the spinal fusion.
Continue to pray for Jeremy to stay healthy and for continued progress on his muscle building. Pray for Dr. Dan, we go back in 3 weeks for our post-op visit and to see about the spinal fusion.
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.
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".
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".
Subscribe to:
Posts (Atom)